Baby Maverick

Happy Birthday Mav

2011-09-12T01:33:00.003-05:00

It is such a relief to write this instead of keeping it inside. Maverick, I want to wish you a happy 3rd birthday in heaven. Your mother and I always have you in our mind, and the only comfort is that you are with Jesus and are having a grand time. Your presence and passing has shaken me to the rawest core. Finally, I can see all the lives that you have touched and how this walk in the deepest of the valley will encourage us to climb upward. The tears I see on your brother and sisters eyes are unbearable at times. My heart flows with pain knowing that Jesus understands being sacrificed for other causes just like you. Thank you Jesus for allowing me to meet my son We sometimes sleep with your stuffed little frog and have airplanes that remind us of our little Mav. Happy birthday son. Daddy misses you soo much. Godspeed Lil' man. daddy.

Our little man

2011-06-08T19:45:00.003-05:00

Hello, My name is Greg and I am Maverick's father. This is the first time that I have added to the post because this was Juli's way to hope and then, ultimately grieve. Maverick will be three this September, I say his name in present tense because he is alive and waiting for us one day in the land of our Lord. However, time does not ease the pain. Literally can be a physical and mental killer. I do not know how Juli has the strength that she does. Probably a lot of people did not realize that at the same time we found out about Maverick via ultrasound, they found a one inch hole in Juli's heart. We were faced with both of them needing open heart surgery. 3 months after Mav passed, Juli was wheeled into the same waiting room that Mav was last in. They had never repaired with a patch the size and diameter of Jules condition, but it worked and we averted open heart for Juli. This was a big gift from the Lord for Maddi, Carter, Chloe, myself and family. Two months later, she started Practioner school and now practices in Shawnee. We truly felt like Job in the bible. As a father, I can honestly say there is not a day that I do not shed tears, anger, conflict, depression and always wondering "what if". Juli and I frequently spend two nights a week crying still. If you have never lost a baby, please don't say it is time to move on. My brother drowned several years ago and it took 5 months to find his body. In many ways, the similarity of watching your son decline daily for 5 months truly has comparisons. The Lord will continue to heal us, but sometimes the wait is unbearable. I ask that if you know anyone that is going thru a similar story, pray for them, call them, visit them in the hospital. If you are not spiritual, don't worry about advice but just listen. The hardest funeral is one of a little child. Go to the funeral and be supportive. That pain will help you see another side and need of your own family. Even as a christian, I promise your life could be turned upside down and cast doubts on faith. Do not ever fall for this, because we are all promised scriptually that we pass this short life on earth. Hug your children a little more. gc

"Here..."

2010-02-23T23:07:00.004-06:00

We miss you sweet boy.

Over the past few weeks I've wanted to blog to let everyone know how the event went and what all has been going on in our lives, but I haven't. No excuses, just an apology, sorry. "Here..." where did that title come from? One day a few weeks ago Greg asked me if we could move anywhere, where would I want to live? "Here..." I said. Why here, do you ask? I'll list a few of the reasons I can think of off the top of my head on this eve of the day Mav passed away. In the past several weeks...

We had a spectacular memorial event for our sweet Mav. Local businesses donated items for a silent auction, friends made baked goodies, tons of people joined us, and we met our goal of raising $3,000 for the Children's Heart Foundation... And 44 units of blood were donated. Thank you, thank you.

We met many new friends that day who have been following our journey via the blog. We are truly surrounded by a community of amazing, caring people. Thank you for your encouragement. We enjoyed meeting each of you.

We've received cards from friends and a person we've never met in the past few days. Thank you for your prayers and for remembering. That means so much to us.

Our local newspaper and magazine covered the event and helped raise awareness for CHDs.

A sweet lady from our church (also whom we've never met) came to our door this evening. She had gone to the cemetery right before they removed the flowers from Mav's grave after the funeral and collected the ribbons from the flowers. She made them into a ribbon blanket and brought it to us today. We can place it on his grave every year. This just blew us away that someone could be so thoughtful. She also shared that she had lost her son when he was 42. He had a CHD.

Everyday I get to see the thoughtful people in our community who helped us during Mav's life and who have helped us get through this past year. Our dear friends who have supported us beyond measure, our church who has truly shown us the love of God through this dark valley, the wonderful people at Grove School who have helped our kids so much with their kindness and compassion. Here, we are close to them. We are also close to many of our family members who have been there every step of the way. Here is home.

Tomorrow will be a difficult day. The past several days have been difficult. One year ago tonight Greg and I were spending our last night with Maverick. About this time I crawled up into the crib in the PICU to snuggle up and sleep with my sweet baby boy for the first and last time. I wish things could have been different. We miss him so much. Thank you to all of you - those close in proximity and those close in heart - for being here with us, we appreciate your prayers. Love you all - jc

Godspeed, Little Man.

100 balloons, 100 CHD warriors gone too soon

2010-02-02T22:38:00.003-06:00

As you probably know, we are planning on having a balloon release to wrap up the day's events for "Art for the Heart." Originally, I had my blinders on and was just thinking of Maverick... Ask any parent who has lost a child what is most important to them and they'll tell you - it's that their child is not forgotten. Then I started thinking... The stories of so many others have touched my heart this year. So many others heard the earth-shattering words, "Your baby has a heart defect." So many others had their babies whisked away shortly after birth to a world of alarms, wires, and tubes. A world so different than the dreams we had for them. Dreams of snuggling them on our shoulders, smelling that wonderful baby smell and feeling their breath on our necks as they drifted off to sleep. So many others had to hand their children off with a last kiss and, "I love you," not knowing what the outcome of such a risky surgery would be. So many others prayed and prayed and prayed as they waited to hear the next update from the operating room. So many others watched, helplessly, as their precious child fought for each minute, each hour, each day - just wishing we could take their place. So many others held the tiny bodies of their little ones as they took their last breath here on this earth. So many others planned funerals and picked out tiny caskets and cemetery lots. So many others hurt, and miss, and cry. For all these other parents, in memory of all our fighters, we will have a balloon release. I have ordered one hundred red, heart-shaped balloons to release. If you have a CHD angel, and would like their name attached to one of our balloons, please post their name, birth date, and angel date to this post. If you are able, we would love to have your support for our fundraiser for the Children's Heart Foundation, however, there is no donation required. I will be adding a button to the side of our blog if you are interested in donating. It's quick and easy and no amount is too small. Together, we can have an impact on the cruel and awful reality of congenital heart defects.

Art for the Heart - Maverick Clark Memorial Event

2010-01-31T13:40:00.003-06:00

For any of my friends on Facebook, you probably are already aware of this, but I'm posting for those who aren't on FB. It's from 9-1 on Feb 13th. Hope to see you there!

For so many parents the birth of a child is not only a hello, but also a long, painful goodbye. For Maverick Clark, his parents, and siblings, the heart wrenching scenario was played out. According to The Children’s Heart Foundation, “Nearly one of every 100 babies is born with congenital heart defects and most will undergo at least one surgery, if not many, in their lifetime.” These precious children born with heart defects, such as Maverick, are in need of the miracles that research can bring.In memory of their son, Maverick, who experienced such a fate, Juli and Greg Clark have teamed with Dejah Quinn Photography and the Oklahoma Blood Institute to create the Maverick Clark Memorial Event, “Art for the Heart”, in Shawnee, Okla. on February 13, 2010. All proceeds of this event will go directly to The Children’s Heart Foundation.This event is to raise funds and awareness for the Children’s Heart Foundation. Dejah Quinn and associates will be taking photographs for a recommended donation. Photos will be taken on a first-come basis. The Oklahoma Blood Institute will be taking blood. To sign up for available slots please contact Aaron at Dejah Quinn Photography, 405.273.2779. Walk-ins are welcomed as well. There will be a Heart-Shaped goodie bake sale put on by Maverick’s siblings and many more fun ways everyone can give to this cause. At 1:00 PM there will be a balloon release in memory of Maverick Clark. Juli and Greg Clark hope this event will not only raise money for a cause they hold so dear to their hearts, but also bring awareness to everyone about The Children’s Heart Foundation and the Oklahoma Blood Institute, who has been in dire need for more blood in the last few months. Please visit www.childrensheartfoundation.org for more information on CHF.

THE FACTS

2010-01-31T12:30:00.000-06:00

Back to school. This semester is taking even more time than last, if that is possible. It's good, though, as it keeps me busy. I've also been preparing for Art for the Heart. We're so excited about it, but it doesn't seem possible our sweet baby boy has been gone for almost one year. Greg and I often talk about how we really can't believe this has happened to our family, our baby. We talk about what he would be doing if everything would have been okay. Becoming involved in the CHD community has made me realize how many people are going through the same thing we are. Many others have little fighters that continue to fight daily. This just keeps me committed to bringing awareness to the number one killer of infants in their first year of life. I couldn't help but copy the facts and paste them today. They're definitely eye-opening. This info is from http://www.childrensheartfoundation.org/about-chf/fact-sheets

Incidence, Morbidity & Mortality

Congenital heart defects are America’s and every country’s #1 birth defect. Nearly one of every 100 babies is born with a CHD.
Congenital heart defects are the #1 cause of birth defect related deaths.
Congenital heart defects are the leading cause of all infant deaths in the United States.
Each year approximately 40,000 babies are born in the United States with a congenital heart defect. thousands of them will not reach their first birthday and thousands more die before they reach adulthood.
Each year over 1,000,000 babies are born worldwide with a congenital heart defect. 100,000 of them will not live to see their first birthday and thousands more die before they reach adulthood.

CHF

The Children’s Heart Foundation is the only organization that was created to exclusively fund congenital heart defect research.
The Children’s Heart Foundation has directed $3.6 million to 37 basic science, translational and clinical CHD research projects at leading research centers across the US and Canada.
CHF has published and distributed 35,000 English and 3,000 Spanish copies of It’s My Heart, a patient and parent resource book.
CHF has established five Chapters and has volunteers in many US states.

Lifelong Disease

Almost half all children and adults with complex congenital heart disease have neurological and developmental disabilities.
There are an estimated 2,000,000 CHD survivors in the United States.
For the first time, more than 50% of the CHD survivors are adults.
10% of all CHD cases evaluated in an Adult CHD clinic are first diagnosed in adulthood.
Economic Factors
91,000 life years are lost each year in this country due to congenital heart defects.
The cost for inpatient surgery to repair congenital heart defects exceeds $2.2 billion a year.

General CHD FACTS

More than 50% of all children born with congenital heart defect will require at least one invasive surgery in their lifetime.
There are more than 40 different types of congenital heart defects. Little is known about the cause of most of them. There is no known prevention or cure for any of them.
In the United States, twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD.

Research Allocations & Impact

Congenital heart defects are common and deadly, yet CHD research is grossly under-funded relative to the prevalence of the disease.
Only one penny of every dollar donated to the American Heart Association goes towards congenital heart defect research.
Of every dollar the government spends on medical funding only a fraction of a penny is directed toward congenital heart defect research.
The NHLBI has stated that Congenital Heart Defects are a serious and underappreciated global health problem.
In the last decade death rates for congenital heart defects have declined by almost 30% due to advances made through research.

Wow, huh? So, through my reading for school, I come across things that apply to Maverick - and of course many other children. It makes me read and research more, because I want to understand every aspect of his condition. I'm thinking of putting some of the info on here. Anyone know how to tab the top part of your blog? I thought it might be good if there was a tab for info about different conditions. Let me know - I'm not a whiz at computers :)

How do you like the new look of the blog? My friend, Dejah, had her expert computer person update it for me. I love it.

Chaos and Awareness

2010-01-02T18:53:00.004-06:00

Hello, all. Hope your holidays were blessed. The kids had a great Christmas. We didn't venture out due to the snow and ice, but we had a good time together at home. I don't think I was prepared for how difficult this break - the holidays - would be. There were several days when it was difficult to do much other than cry, but there were days with lots of laughter. The kids started back to school this past week, and I start on Monday. I have realized how much the chaos of normalcy helps keeps my mind occupied.

Speaking of chaos... Carter's birthday was the 7th, so we had his party last night. He really wanted to have a sleepover, and since we didn't have a party last year we obliged. There were twelve boys here and nine spent the night. They had so much fun - we took lots of video and pictures. My friend, Dianna, is one of those moms who always does fun stuff with her kids. She came over on Friday to give me some ideas for games. She was talking about a game where the kids put all their mittens in the middle of a circle and the one to get a match on first wins. I started thinking, and I know this is just wrong, but go with me... I had this huge basket of socks that desperately needed sorting... So, a new game was born. No, I'm not kidding. We had all the boys sit in a circle and close their eyes. We brought the monstrous basket of socks in and dumped them in the middle of the circle and told the boys that the one who got the most matches was the winner. The prize - a giant Hershey bar. When we told them to "go", you should have seen them. They tore into the pile and started shouting, "I FOUND A MATCH!" Dianna and I almost wet our pants, we were laughing so hard. We videoed the game. Dianna is sure we'll end up on the Today show or something for this one. It was hilarious. I'm going to try to download it and put a link on here. I heard one of the boys telling his dad about the game as he was walking out this morning. I can't imagine what his dad was thinking. I'm sure the moms will either think I'm a nut or brilliant. The winner had 27 matches - that is just so wrong, isn't it?

Ok, now for some news I'm so excited to share. We have most of the plans ironed out for the event I've been eluding to in memory of Maverick. This event will raise awareness about congenital heart defects and will raise money for research to help treat and prevent them. February is such a heart-related month. Congenital Heart Disease Awareness Week is Feb 7th through 13th, then Valentine's Day on the 14th, then Mav's angel day on the 24th. So, all that said, on February 12 and 13, we will have an event at Dejah Quinn Photography (http://www.dejahquinn.com/). She and her associate photographer, Julie will be doing their beautiful pictures - and for a donation, you will get one of those beauties, on site, that day, to take home thanks to Best Buy and Mr. Quinn. They do the most amazing work, and I promise you will not be disappointed. If you don't have children, don't let that stop you from participating. Wouldn't it be sweet to have a photo of you and your spouse or significant other taken for Valentine's Day? When's the last time you had YOUR picture taken? All the money raised will be donated to the Children's Heart Foundation (http://www.childrensheartfoundation.org/). This organization's purpose is to fund the most promising research to advance the diagnosis, treatment and prevention of congenital heart defects.

On Saturday, in addition to the photos, we will be hosting a blood drive in Mav's memory. There will be two blood mobiles available for your donating pleasure. We will be able to sign up 55 people - and they want people to sign up in advance. The lady from the blood institute was a bit skeptical about our ability to get that many donors. I took that as a challenge and told her I would love to prove her wrong. Now, I know all of you have blood, so pLeASe help us show her how wonderful you all are. They are even going to bring a special machine on one of the blood mobiles so if you want, you can donate PRBCs (packed red blood cells). Those are used for babies, some may be used on heart babies like Mav. Wouldn't that make your heart feel good? Also, if you're into sweets, Maddie is hosting a bake sale. She'll be making some of her famous sweet treats. I'm sure Carter and Chloe will get in on the action as well. Those proceeds will also be donated to CHF.

To wrap up the event, we'll have a balloon release in honor of Mav and all the other babies and children who fought so hard during their precious lives here on earth.

I'm so excited about this. It is so bittersweet, but after losing our little fighter and watching so many others lose their sweet babies, I feel like we HAVE to do all that we can to help prevent someone else from having to walk this road. I feel like research is the only way, so that's why we're donating the proceeds to CHF. This is my passion. I hope all of you have a passion, and I pray you don't have to experience tragedy to find yours. I'll keep you updated on all the details. Love you all, jc

P.S. Please join me in praying for another sweet heart patient. She's a precious three year old that will be facing a heart transplant if a miracle doesn't come her way. Her caring bridge site is http://www.caringbridge.org/visit/katiebracken.

Christmas Pics - last year...

2009-12-25T15:29:00.002-06:00

Something is wrong with the memory card for my camera and I can't upload the pics from today or yesterday. Thought I would put these in instead... Enjoy your Christmas and squeeze your kids extra tight.

Merry Christmas

2009-12-25T12:32:00.003-06:00

The kids have opened their presents. We had monkey bread for breakfast - everyone's favorite. The kids bundled up and ventured out into the snow and soon came back into the house complaining of how cold they were. We've enjoyed the morning, but I can't help but think of the little one that we're missing today - sweet baby Mav. He's having his first Christmas in Heaven. It must be so much more beautiful than even our white Christmas here. There are so many others with their little heart warriors sitting in the PICU's, CICU's and NICU's today praying that their children will get better. I remember that vividly. I've been updating the blog this morning as the kids are playing - why? Because it's important to me to DO SOMETHING to help the CHD community. I've often thought back to the day Mav was born and wondered, "Would anything have been different if we would have saved his cord blood?" I don't know the answer. I asked about it when we were admitted, but the nurse said there would be so much going on in the room that she didn't bring it up to me. I've read a recent study about adult patients that received stem cell transfusions immediately after a heart attack and they didn't require bypass surgery. I wonder if it would have helped his stiff right ventricle... or his kidneys... I seriously think that parents preparing for the birth of a heart baby should consider saving their cord blood. You never know what scientists will come up with next. Here's an interesting article about growing new heart valves. The physician I've been working with went to grand rounds at Children's a couple of weeks ago and this was one of the topics. Here's the link if you're interested - http://www.associatedcontent.com/article/88133/congenital_heart_defect_stem_cells_pg3.html?cat=52

There are some new links to websites at the right hand side of the page for your educational enjoyment. I'll post some pics of our Christmas Later today. Have a blessed day. Love you all - jc

The holidays...

2009-12-22T21:08:00.003-06:00

The holidays... This time of year has come around quickly. I can't believe it's been a year since we were coming back to Oklahoma with our little Mav. It seems like yesterday when we were flying back home. We placed him on the bed in the PICU in Oklahoma and he popped his big blue eyes open and looked at everyone like, "Where in the world am I and who are you all?!" I'll never forget that look. Oh, what a difference a year can make. Instead of picking out new mobiles for him (like we did last year), I've been making a grave blanket. Last year I had never even heard of a grave blanket. We still haven't finalized the details for the headstone. It is just so permanent - not something we can just change at any time. Sigh... at least it's comforting to know he's happy and not in any pain. His fight is over and what a hard fight he waged. All is good for him from now on.

The brevity of life has been brought to light once again this year as we experienced the loss of Greg's Uncle Roy just a couple of weeks ago. I posted about him awhile back. He was diagnosed about 5 months ago with cancer. He was an important part of Greg's life growing up and he will be missed by many. I can't help but think about the pain his wife, Aunt Linda, is going through right now. Keep her and their children and grandchildren in your prayers this holiday season.

Our kids are doing great. We had pics of them taken a few weeks ago for Christmas cards, and I still haven't ordered any, yet. I've decided I'll not stress about it and we'll have New Year's cards - perhaps even Valentine's Cards instead... Okay, that may be pushing it. It's been difficult for me to decide how to even do the cards - I don't want to leave Mav out. I think these worries over doing things the "right" way - when there really is no "right" way - may be adding to my procrastination. When we were having the pics taken, I couldn't help but think about the sweet baby boy that was missing from the picture. I started to cry at one point during the photo shoot. Just a week or so earlier, my sweet friend Mary (www.browniebitez.blogspot.com) surprised us with a beautiful red airplane ornament. When we received the box in the mail, I didn't know what to expect. I opened it and saw that perfect, shiny, red airplane and started crying. I knew it would be the perfect remembrance in our pictures. My photographer friend, Dejah, didn't disappoint. She incorporated it perfectly. I'll share the pics this week. There is one of the airplane all by itself that I just love.

The kids are glad school is out and we're enjoying our time together. We've made Christmas cookies and put up lights. Maddie made banana bread tonight and we watched "Elf" - the kids love that movie. They're spending some time with their grandma and Aunt Jan tomorrow so we can get a few things finished up for Christmas. Tomorrow evening we'll be making some desserts for Christmas Eve. Greg's family is coming over then. We're staying home on Christmas Day and some of my family may stop by then. The holidays have been and will be sad at times, but I don't want the kids to miss out on the joy of this season because of our sadness. It's a balancing act.

I'm finished with school this semester. It went well and I enjoyed it, but I'm also enjoying this break. I'm feeling more comfortable with clinicals and kids' ears are getting much easier to decipher. Greg has been feeling a bit better and we're very thankful for that.

What else? We're working on something exciting for the end of February here in Shawnee - it has to do with raising awareness and support for congenital heart diseases. I'll have more details later. I'm excited about it. There are many new heart sites out trying to increase awareness as well. I'm going to try to get links added on here for all of them. I'm not the most computer savvy person, but I'm sure Maddie can help me!

I haven't posted many funny stories about the kids lately, so I thought I would close with one tonight. Chloe and I were driving to pick up Maddie from dance one evening. We passed a "smoke shop" and Chloe asked what all those people were doing there. I told her they were buying cigarettes. She said, "I'm not going to buy cigarettes, mom. I'm going to buy groceries," By this time we were at the corner and stopped at a stop sign. On one corner was a large - think charter sized - bus for sale. It's been there for awhile and the kids like to talk about it every time we pass it. So, with barely a second passed, Chloe finishes her sentence... "and that bus. And I'm going to paint it pink... For all my kids... Like the Duggars." For those of you who don't watch much tv, the Duggars have a reality show on TLC called "Eighteen Kids and Counting." They have nineteen kids now - all are their biological children. Yes, our Chloe want to have lots of kids like the Duggars. She wants to be a momma and "the docta that helps you push the babies out." She keeps us laughing.

Hope you all have a safe holiday and remember Jesus is the true reason for the season. Love you all, jc

Thankful.

2009-11-25T00:27:00.003-06:00

I can't believe it's been this long since I've written. School has kept me so busy. I seriously don't know what I would do if I wasn't in school right now. Of course, I'd probably be working, but I'm glad I'm this busy. It's still hard when I'm not. So much has happened, and I've been wanting to write, but it's been hard to find the time. The kids are doing well. Maddie is dancing, Carter's grades are improving, and Chloe is being Chloe. Greg is doing okay. Some days are great, others aren't. His back is still bothering him some, but it seems like the days are father between. He's decided not to do the internal pain pacemaker now. He's going to hold out for a while and see how things go.

My semester is over in less than two week. One down, three to go. I can't wait to get out. I had a little down time this evening after finishing a test, so the kids and I started getting Christmas decorations out. I've had a few moments and can tell the holidays are going to be a bit difficult.

Last week I went to lunch with Ms. M - she was one of Mav's nurses here in Oklahoma. We really bonded with her and just love her to pieces. It was good to chat. We talked about life in general and little Mav. I had a bit of extra time prior to meeting her for lunch, so I stopped by Target and looked at the Christmas stuff. I was looking for a white wire tree - long story - but they didn't have one. While looking around I went down the ornament aisle. We usually get the kids an ornament every year - I saw all the little baby ornaments and they made me sad. Do I still get an ornament for Mav? I probably will. Maddie asked me a few weeks ago if we could put up Mav's stocking... How are you supposed to handle all this? There is no instruction book. There isn't even a "right" way of doing things. I guess we'll just figure it out as we go along.

We're still trying to figure out what to do about Mav's headstone. The dimensions we were given were the ones I used to draw out the design for it. The company finalized the design and then we found out the dimensions we were given were wrong and it is too big and too heavy. Too heavy? That's really something I've never thought about - really, no one should ever have to think about something like that, uggh, it just makes me sick. The cemetery said they would let us do it that size since we were given the wrong information - it's been suggested we pier the headstone. We're just taking a breather right now. We don't know what we should do.

We still haven't heard from anyone at Children's about the ideas for the money. I'll update as soon as I get some feedback.

Something interesting happened this week. I have finally gotten to the place where I can start reading my Bible again (that's not the interesting part). I've started a new book/Bible study titled, "Tune In" by Jen Hatmaker. It's about hearing God. I've had a hard time with that topic since Mav died, because I really thought He was letting me know Mav would get better. I was wrong. Anyway, I was praying one night that God would just give me some kind of sign and make it very clear that things are going to be okay, that He's still here with me, and that Mav is happy and okay. The next day I had to make a trip to Oklahoma City to run an errand and I was thinking about Mav and listening to the radio. I was driving in the passing lane on the highway and thought I say the word "Mav" out of the corner of my eye. I slowed way down and turned my head to the side. I was passing a shiny red semi-truck, and on the door it said, "Maverick." That's all - or at least that's all I saw. Maverick. Coincidence? I don't think so. I think it's what I asked for. I was thankful - so thankful for that.

(Sigh) so, speaking of thankful, we're going to my uncle's house for Thanksgiving and to Greg's parent's on Friday. I love Thanksgiving food. It is my favorite, favorite, favorite. We'll get to see a lot of family - my brother and his family are coming up from Texas. We haven't seen them in quite a while - I'm looking forward to seeing everyone.

I went to lunch today with one of my favorite pilots from Mediflight. He's the one who flew Mav and I back to Oklahoma. I miss seeing all my Mediflight friends and working with the sick babies, but there is no way I could have squeezed anything else in this semester. I'm hoping next semester might be a little better. I'll still have 12 hours, but one fewer class. I'm starting on my clinical hours early- the second week in December, so I'll have 70 hours out of the way before the semester starts. There are a total of 180 clinical hours next semester.

What else? We're having family pics taken this weekend - hopefully everyone will stay well. I know there are a ton of other things I meant to write about, but I can't remember them now. I saw a neat idea on the internet and I think I'm going to do it. It's a memory jar. Decorate up a good sized jar however you want. When the kids say those funny things you want to remember or when something memorable happens, you write it down on a little piece of paper and put it in the jar. You all probably have amazing memories and don't need a memory jar. I'll post a pic when we get it fixed up.

Okay, well, it's very late and I need to go to bed. This post wasn't meant to be too depressing. We're doing okay, I think this is just a difficult time of year. Hope you all have a wonderful Thanksgiving. Love you all, jc

KXXY interview and kids stuff

2009-11-09T23:23:00.002-06:00

My stepmom, Teresa, sent me a link to the radio interview. Greg and I listened to it tonight and it made me cry. I've never heard that song before, but it was very appropriate. They did a great job compiling everything. Here's the link. http://public.me.com/jeromyadams Click on the KXXY folder - it will open the folder. Then click on Maverick and download, then open it. I'm sure the other stories are amazing, too.

The kids and I went to Lowe's this evening... They have always wanted to jump and play in a big pile of leaves, and we have plenty of leaves in the yard right now. The problem is we don't own any rakes. We've always had a lawn service do our lawn (Peltier Lawn Service - if you need a good one) and they've always cleaned up the leaves. SOOO, this evening I called and asked them to not clean up the leaves, and the kids and I journeyed out to Lowe's to pick out rakes. Chloe even got a little yellow one. The big ones are guaranteed for 25 years, so I told Carter he has to come back every year for the next twenty-five to use "his" rake. His eyes got big and he said, "I'll be 33 years old!!" They were able to rake one big pile in the front yard and play around in it a bit before dark. They can't wait to do it again tomorrow. It's funny how it's all play to them. I'll post some pics in the next few days.

Little Chloe is getting sassier every day. She's been asserting her independence and testing her momma. She was taking a bath last night and wasn't minding and I told her sternly with my stern face to "mind the first time." I was in the middle of another sentence and she said, "Wait!" I said, "what?" She looked at my face and got closer, then further back, then closer again. She finally said, "Somethins wrong with your eyes. You need to go to the doctor." I said, "What's wrong?" She said, "They're popping out of your head." How could I continue with my stern talk after that?

I better go for now. I have another test tomorrow. Love you all, jc

Preparing Children for the Hospitalization of a Sibling

2009-11-05T23:34:00.004-06:00

I wanted to post this assignment from my Health Promotion/Disease Prevention class. The assignment was to do any type of anticipatory guidance handout/brochure. There have been sooo many brochures on immunizations, infant safety, feeding guidelines, child safety, etc. I started thinking about what I learned during our hospitalization with Maverick and what might be helpful to others about to embark on the same type of journey we were on at this time last year. So here it is. I was only able to download it as a jpeg here, but if anyone wants a pdf file of it, send me your email and I'll send it to you. It is a tri-fold brochure and the top is the front and bottom is the inside. Anyone is free to use it as needed. Hopefully it will help another family in a similar situation.

School, Mav's lecture, and Jonah vs. Job

2009-11-05T22:46:00.004-06:00

Hello, everyone. It's been a while. I've been in clinicals and doing lots of school work. Today was my last day of clinicals for this semester. Thanks to Dr. Jennings and Dr. Chapman for letting me tag along and for all the great learning opportunities. I enjoyed them.

The first day of the pediatric clinicals was very different. I have never worked in a pediatric outpatient setting and on the way home I was thinking, "What am I doing?" It goes without saying it's completely different than mediflight. I've always been the type that has to feel competent at something to enjoy it, and looking in ears took a little bit of getting used to. On the first day, I went home thinking, "it is so much easier to intubate a 24-weeker than it is to look in a kid's ear." After about the third day, I really started to enjoy it and the ears are getting easier. I'm going to do some clinicals again in December to get an early start on next semester's hours, and I'm looking forward to them.

I heard that Mav's story was on the radio this morning for the Children's Miracle Network radia-a-thon. I think it's on 97.something. I'll have to find the paper to be sure. It's supposed to be going on through tomorrow. I'm glad they aired it. I was wondering if they would since it wasn't the typical "look-our-miracle-baby-made-it" kind of story.

Speaking of little Mav, I went to the meeting last week at Children's to speak with Dr. Stull, CMN, and my step-mom, Teresa, about what to do with the money. He had a suggestion that Greg and I loved. He said the amount we have is about the amount needed to sponsor a lecture from an expert in the field. So, that means they'll pick out someone who's a big name in pediatric cardiology and have them come to lecture the doctors, nurses, and med students on the latest advances/innovations/practices in pediatric cardiology or something related to that field and sweet baby Mav will be sponsor/reason/whatever it will be called for the lecture. All that being said, he's going to talk with Dr. Overholt (the chief of cardiology) to see what he thinks (or if he has any better suggestions) and then they're supposed to email and let me know. I haven't heard anything yet. He said it could be an annual event as well as long as we continued to have the funding. So, we'll wait and see what they say. I hope it all works out. I think that's a great way to honor little Mav.

The kiddos have been doing well, and everyone except Greg is over the bouts of illness. He caught it worse than the kids and has been doing breathing treatments to try to get his lungs cleared up. But, hey, this is just normal stuff. Stuff to be thankful for.

Just some food-for-thought... Maddie and I went to church last weekend and there was an amazing guy named Afsheen (sp?) that was speaking. His sermon really got to me. He spoke about Jonah and the whale and how Jonah kind of had a bad attitude. There were instances where he ran from God and got mad at him. Then he spoke about Job and how eventhough he lost everything, he continued to be faithful and didn't get mad. I'm not doing this sermon any justice, but I walked out thinking about how much I have been like Jonah - mad, ungrateful, etc. And how I need to be more like Job. I've felt like the last few years for our family has been a "Job" kind of experience - not just with Mav, but with the many other issues we've faced. I just haven't handled it the best way. I've decided I can't keep on being mad. God helped us get through the past couple of years in numerous ways, and to be mad because he took Mav discredits everything good he did. Soooo, maybe this will be a turning point in my life, once again.

2009-10-25T23:58:00.002-05:00

Twenty years ago - that sounds like a long time, but seems like yesterday. This weekend was our 20 year highschool reunion. This one was with my friends from Crescent. I actually didn't graduate there, but was there from fifth grade through my junior year. I still have friends I keep in contact with from there. It was a weekend long ordeal, but I just met up with everyone on Saturday night. I had so much fun seeing and talking with everyone who showed up - they all looked the same. There wasn't one person I didn't recognize. It was interesting to see how different everyone's lives are. One classmate has a 20 year-old daughter, and at the other end of the spectrum are those who haven't started families yet. I'm pretty sure Mav would have been the youngest baby... sigh.

The weeks have been flying by lately. GYN clinicals are finished now and I start pediatric clinicals this week. I think I'll enjoy them. Tomorrow my mom and Brown are flying in. They'll be here for the night and leave on Tuesday. I'm glad we'll get to see them, even if it's only for a little while. I'll start the peds clinicals on Tuesday. Wednesday will be an exciting day. I have a meeting with some important people to talk about donating the money you all raised in memory of Maverick. I can't say much now - because really I don't know much, but I should know more after the meeting. Thursday is another clinical day and Friday will probably be spent trying to get assignments ready for next week. Throw in a few fall parties at the school and family pics Wednesday evening and the week should be pretty interesting.

I'll share more later - I've got to go to bed. Love you all - jc

October 15th

2009-10-15T23:40:00.002-05:00

Today is Pregnancy and Infant Loss Rememberance Day. We lit a candle for Mav at 7:00pm tonight. They call it the wave of light. Everyone lights a candle at 7pm in their time zone in rememberance of the baby they lost - it ends up creating a wave of lit candles around the world. The website is http://www.october15th.com/ if you're interested or curious. Here's a video of our sweet boy. We don't need a special day to remember him, though - we remember him everyday. I just thought it was a nice sentiment, so we participated.

Things are about the same around here. Kids continue to spread germs around. Maddie was sick for several days last week. She's my handwashing germophobe, so if she got it, it must be easily caught. Greg and I have missed out on the sickness so far - thank goodness. We don't have time to be sick right now.

Update on situations: Greg had his pain pacemaker placed and taken out. He thought it helped, so he'll have a permanent one placed later in the month. My grandma met with the surgeon who thought she would be a good candidate for a lumpectomy, but things are moving painfully slow with this process. She has to have an MRI and see the oncologist, then go back to the surgeon. Baby Ian died (the friend of one of my heart-mom-friends). I've read her caring bridge site and hurt for her and her husband. It's such a difficult time - and still is. Say some extra prayers for them. Our uncle is in Texas now undergoing treatment for his cancer. He should be back in a few days. We're praying all goes well and he doesn't get very sick.

Greg was cleaning around the house this evening while I was finishing a project for school. He found the CD from Mav's funeral and we listened to it. Even without seeing it, I could still picture it all in my mind so vividly. Todd did a great job on the sermon. I think it was a good day to hear it again - that message is still so applicable to everything we're going through. He later found the DVD and watched it - I might later. We still need to download more pics and videos from the camcorder. The first time we used it since Mav died was for Chloe's birthday party.

I started clinicals this week and I've enjoyed them. I'm with Dr. J, an ob/gyn. He's my friend Amy's husband. I've really enjoyed talking to the women, and learning all these things that are new to me. Maddie has been curiously appalled by this rotation. Eventhough she says she wants to be an OB when she grows up, I don't think she realized that would entail "well-woman visits" - if you know what I mean. It will be completely different in a few weeks when I have sick kiddos screaming at me...

Maddie and Carter are on fall break now. Their last day of school was on Tuesday. They are glad to be home. I was glad to sleep in a bit this morning. We really don't have any great plans for the break. I'm hoping the weather clears up - I'm ready to see the sun again. We usually go to the pumpkin patch down the street and take pictures around this time. If the weather will cooperate, maybe we'll do it this weekend. Hope you all have a good weekend - love you all, jc

More birthday pics

2009-10-06T23:37:00.002-05:00

Guess where she wanted to go for breakfast on her birthday? Yes, we're at Starbucks. She got a Starbucks card as a birthday gift and was very excited. I got her something different this time though and she wasn't too thrilled with it - she said, "it has too much sugah." I didn't think there was such a thing.

Of course I didn't mind going and she had to take a picture of me if I was taking one of her.

Grandma and Papaw came over for cake the evening of her "real" birthday.

Here are a few more birthday pics - from her "real" birthday as opposed to her "fake" birthday. That's what she kept asking about the day of the party with her friends, "Is this my real birthday or my fake birthday?"

She was very tired at the end of the day and passed out with her heating pad and her baby.

Chloe's Birthday Pics

2009-10-06T22:42:00.003-05:00

Us with the birthday girl

The birthday girl

The birthday party spot - our favorite - Benedict Street. Little miss didn't want any balloons - she now has a phobia of balloons, so we found these poofs to hang.

Busy crafting.

Lots of friends and fun

Here are some pics from little Miss C's birthday. She had such a great time. Thanks to everyone for coming. She made me smile several times today - they all made me smile, but at this age she has such an active imagination. After I picked her up from Mother's Day Out, she disappeared into the house. I was sitting at the kitchen table working on my paper and here she came dressed in scrubs with a stethescope around her neck. She peeked her head into the kitchen and said, "Julianne." I said, "what, baby?" She said, "I'm not baby, I'm the doctor." I carried on the conversation with her and asked her what kind of doctor she was. She said, "The kind that helps you push the baby out." OK, then. I went into her "office" and told her I didn't like shots. She said she would give me medicine to make me go to sleep and it wouldn't hurt. She wanted to give me two pills, then changed her mind and said, "Ashlee (actually) five pills." Then I pretended to be asleep while she pretended to cut my belly open. Such an imagination...

Onto a real doctor subject, we finally received the "ok" from the insurance company for the pain pacemaker for Greg's back. The appointment for the temporary one is tomorrow. Say a prayer that all goes well. If it works, he'll have a more permanent one placed sometime later.

I have a few more special requests this evening. My grandma on my dad's side has just been diagnosed with breast cancer and will be meeting with the surgeon soon. We have an uncle on Greg's side with cancer as well. A fellow heart mom, Vanessa (Owen's mom from the cute balloon pics) has a friend with a very sick little one. He has tetralogy of fallot and another serious medical problem. They have a caring bridge site at http://www.caringbridge.org/visit/ianandyellis if you want to offer them any encouragement. Sorry for all the negative news, there are just several people who need prayers tonight.

I better go for now - more studying to do for a genetics exam. I've always enjoyed genetics. At least my theory paper is finished and has been submitted - that's a big relief. Love you all, jc

More balloons

2009-10-04T23:20:00.004-05:00

I'm taking a break from studying. Only so much a person can do in one evening without going completely insane. The house is quiet - except for the sound of Carter's cough. The kids have been passing it around for the past week or so. I thought I'd post some more balloon pics. Thank you all so much for sending them. These are from friends of my step-mom, Teresa. They work at Children's Miracle Network.

Their balloons did much better than ours.

Here's my sister, Heather, and baby Addie. I couldn't enlarge the pic without it being too "pixelated" - is that a word?

These pics are from Justin and Jill. They're our cousins on Greg's side of the family. Justin is a youth pastor in Texas and came by to check on us and Mav frequently while we were in Dallas. I had to post the message he sent along with the pictures. It brought tears to my eyes.

Greg and Juli,
I had the privilege of sharing Mav's story with our students tonight. We talked about how compassion and love enable us to leave a mark on our world. I was amazed today when I began thinking how Mav left an indelible mark on this world and how his sweet spirit echoes here and in eternity. We wanted to take the opportunity to be involved in the balloon release so attached are pictures of the group, Ryan (who was in the hospital the same time as Mav), and the balloons floating across Princeton. Thanks for sharing your lessons with us through the blog and for giving us the chance to share in the celebrations of his life of impact.

Sincerely,

Justin and Jill

I was just tagged on facebook with this picture. My blog-friend, Mary helped start up the Michigan chapter of It's My Heart. They did their first heart walk recently - here's a copy of the back of their shirt - little Mav's name is on it.

Thanks, Mary.

This past week I had the opportunity to speak with an Oklahoma City radio station for a pre-recorded interview for Children's Miracle Network's upcoming radio-a-thon. I met them at Children's in the lobby and told them about Maverick. The other people that were there to do interviews had their miracle kids with them. I explained to the guys that I was the other side of the story - that not all the little miracles get to go home. I thought I could be strong and talk about it, but I cried a little. After I left, I thought about all the things I wish I would have said - like telling more about Maverick not just his medical conditions. I wish I would have mentioned his big blue eyes and long eyelashes, and how he liked his monkey and his mobile. Oh, well. I guess the point of my story is that more money needs to be raised for research for congenital heart defects and for new treatment options. Hopefully that point will make it across to the listeners if they decide to air it.

Since I've last written, Chloe has had a birthday. She's now four years old. Time flies. I still need to download the pics from her party, so I'll post them in the next few days.

Well, it's getting late and I need to go to bed. I have a paper to get finished in the next few days. It's for Nursing Theory and is a concept analysis on "adaptation." I think I have plenty of life experiences to understand that concept. Love you all, jc

Normal

2009-09-22T22:57:00.002-05:00

I've received some more balloon pics and I'll post them soon. I love them all. Thanks so much to all of you. Just a quick update... We were able to take our drawing of Mav's marker to the funeral home last week. They are working on it now. It's very unique - just like Mav. It has an airplane as the major aspect of it. I think it will be great. I think it's going to take a while, though. While we were there, Chloe kept wanting to go to the area where Mav was on our first visit there. She wanted to see if he was still in there. I explained to her that he wasn't there and reminded her that we buried his body in the ground. She's just so young, it's hard to explain. Greg picked up a few things that we had left there. One thing was the soft and silky blanket I held him in when I would hold him at the hospital. I'm glad to have it back.

Things around here are going well. I've been busy with school and kids. I'm loving school and it's going great - except for trying to get clinicals ironed out. The kiddos are doing well (just a few minor coughs). Maddie is dancing and having a great time. I had to sew elastic and ribbon on pointe shoes today - where is my mom when I need her???

Chloe's birthday is coming up and we're having it at Benedict Street. She's so excited - isn't that funny? It cracks me up that she would rather go there than McDonald's. I'm not complaining. Dejah took some amazing pics of her, a couple are on her blog at http://www.dejahquinnphotography.blogspot.com/. She is such a ham. The cute clothes are thanks to Dr. G. She brought us fall stuff and it is soooo cute. Chloe is having fun trying things on. It's nice to have friends with great hand-me-downs!

Carter is working on school - we had parent-teacher conferences last week. He is such a smart boy, he just has better things to do with his time. We're trying to help him think otherwise. He's been doing homework and playing with frogs in the backyard, I guess they're out because of all the rain.

I was just thinking today about how "normal" our lives seem. I watched the news today - I haven't seen it in several weeks. It broke my heart to hear the mom talk about her little girl at Children's who isn't expected to make it due to the flu. A year ago we were in the hospital with sweet Mav. Just remember to be thankful for your normal days and your healthy kids, and say a prayer for those who aren't having normal days right now.

Lots of Balloons

2009-09-14T22:11:00.006-05:00

Thanks, everyone for your sweet emails with the pics of the balloons - I loved looking at them. I have to share them...

Here's a sweet message from Judith.

Clara and Dale from Mustang had the same luck we did - the one day out of the year there was no wind in Oklahoma. Wil and Carter from Houston had better luck. Their mom is my sweet friend, Kim. We like her hubby, Dave, too. Thanks Wil and Carter - we miss you guys.

Here's Vanessa and Owen. We met them in Dallas, but they've since moved to Arizona. Owen left the hospital the day Mav had his surgery. He's a TGA heart baby and is doing great. He's giving the balloon a kiss for Mav. What a cutie. Thanks, Vanessa. Glad the weather was working for someone!

Here's sweet baby Drew. Chloe knows him and his mom "Mawy" (Mary) by name from looking over my shoulder at her blog. He's another heart warrior from Michigan. I met them through the blog world and she's been such a great support throughout everything. She has a great blog at http://www.browniebitez.blogspot.com/ and shares lots of info about CHD.

This is the congregation of my step-mom, Teresa's church, Resurrection Lutheran in Yukon, OK. They combined the balloon release with grandparent's day and let off balloons for others who have lost their loved ones as well. What a great idea.
I was so touched to receive these pics and email from Mav's nurse, Marci, and her hubby, Charlie. Their balloon attempts didn't work, either, but they lit a candle for little Mav and put their little monkey by it. Such a sweet couple.

I was so happy to find out that Michelle had taken pics of Mav's cake before she sent it to me to be destroyed. She emailed them to me today. Isn't it perfect? Those who were with us at some point in Dallas will appreciate this cake. One of Mav's nurses, Morgan, drew this little airplane on his board and I wouldn't let anyone erase it. It is a big memory from Mav's life. We just might do this same cake every year on his birthday. It was wonderful - even though the icing had shifted due to my accident. Here's how to get in touch with Michelle if you need a great cake. Myspace.com/michellesmunchies

Today, I spent the day helping my friend, Dejah, decorate her studio. I really enjoy painting and decorating. It's relaxing and takes my mind off things - and I was in good company (Dovie, Dejah, and I can't leave out Mr. Quinn). Their place looks really nice.

Tomorrow it's back to the books. I have a test on Thursday and need to get some more study time in. So far things are going well in my classes. I'm still trying to get the paperwork ironed out for clinicals. Hopefully it will fall into place soon. I better get to bed. Thanks again, everyone. Love you all, jc

Happy First Birthday in Heaven, Mav

2009-09-12T22:50:00.002-05:00

One year ago today...

We had such high hopes for a successful surgery. We were prepared to bring home a sweet baby in three weeks - four weeks tops (my words). I held Mav without any wires or tubes for the first and last time during his life.

If all of this has taught me anything it should be that no matter what plans I have, ultimately, I am not in control. I was reminded of that several times today; even though we had everything planned out perfectly. The first issue, it rained all day. This afternoon, kids and I went to Staples to make the tags for the balloons. When we got home and tied them on, they were too heavy for the balloons to float. We had to tie two balloons together to lift the tags. We were leaving to go to the cemetery with balloons and the cake (we weren't eating the cake there, I just wanted my talented photographer friend, Dejah, to take a "good" picture of it) when on the way out the door, it slipped from my hand and landed face-down (still in the box) on the porch. I screamed. The cake was so perfect - we had it made here in Shawnee (if you need a cake let me know and I'll give you Michelle's number). It had the airplane that was on Mav's dry erase board in Dallas on it (if any big D people are reading, let Morgan know we used it on his cake). I hadn't taken any pictures of the cake of , yet. It was pretty messed up. Greg told me it was okay and that today wasn't about the cake. We headed for the cemetery. We had a few "test" balloons, so Greg and Carter got out of the vehicle to let one go and one piece of the umbrella broke when they opened it. Then, balloon headed straight for a tree and stuck there. We decided to change plans and release the balloons from our front yard. We drove back home and went inside. During all the shuffle, the balloons became entangled - they were a mess. We finally untangled them, went outside and four got tangled again. When we finally got them untangled, the rain was so hard or the atmospheric pressure was so high that they wouldn't float. They drifted into the road and into the neighbors' yards. So, we gathered the balloons and went back into the house soaking wet and thanked our friends for their attempts to take pictures of Mav's day. When 7:02pm rolled around we took the disheveled cake out of the box, lit a candle on it and sang "Happy Birthday" for Maverick. The kids blew out the candle and a few seconds later it lit back up. It's not even a trick candle. Maybe it was a sign from Mav, or maybe it was God letting us know we're not even in control of something as small as a candle.

So, we're going to try to release the balloons another day. I suppose it doesn't have to be exactly on his birthday. That was just my plan.

Greg and I were talking on the way to the cemetery about our other kids first birthdays. We were always stressed out about getting the house clean and decorated and making sure everyone was invited; making sure the cake was just right and child was rested and happy for the event; making sure the batteries were charged for the cameras; making sure the clothes were right for the pictures we would be taking, etc. Today put a lot of things into perspective for us. This entire past year has. We shouldn't stress over the little things. We should enjoy each day no matter what problem it brings. Most problems are small in the grand scheme of things. I would have loved to have the "stress" of those small problems today.

Last night I had a hard time getting to sleep. I spent the afternoon with my friend, Dejah, talking about ideas for Mav's grave marker. She was going to design it for us. Greg and I were talking later yesterday evening and he threw out some ideas for the design. They were great. I called D and asked her to stop working on it. I cut out a piece of craft paper in the size of the marker and started drawing. Before I went to bed, I had it finished. Greg looked at it when he woke up and loved it - we think it will be perfect. I'm relieved we were able to at least finish the design before his birthday. We'll get with someone this week and talk about having it made. We've had such a hard time sitting down and trying to come up with something for his grave. Some people have the markers ready and placed in a few months, and we've felt bad that we haven't done that. It's just been so hard to look back through all the pictures and pick which ones we want on it. I'm glad we've finally decided. I can't wait to have the finished piece to share with everyone.

Before I get off here for the night, I just wanted to thank everyone for their sweet sentiments, cards, gifts, flowers at the grave, and prayers. It means so much to know that our sweet boy hasn't been forgotten - really, you'll never know how much it means to us. Thanks so much. We're so blessed to have you all. Love you all, jc

For momma's sweet boy on your first birthday,

We miss you so much. I miss walking into your room in the morning and saying, "How's momma's sweet boy?" and kissing your soft little cheeks. I miss seeing the look you would give me when you wanted your mobile turned on. I miss holding your hands. I miss rocking you during our special time during the day. I miss seeing you feel your favorite little monkey. I miss reading you "Brown Bear," you always liked looking at the bright colored animals on the pages. I wish we could have shared those times at home. You're in our thoughts everyday.

Thank you for being such a fighter and for trying so hard. I know you gave it everything you had and we're so proud of you. I'm so sorry for all the things you had to go through. I'm so glad you no longer have to endure the tubes, pokes, fevers, dressing changes, procedures, and pain. I would've given anything to take your place. Daddy and I both would have. You are truly my hero and Daddy's, too. I know you don't miss this place at all. I know you're happy and healthy and free now and that makes me happy for you. I just sooo wish things could've been different. It just seems so unfair.

You have touched our lives and changed us forever. Your spirit will always live on as long as we're alive, I promise. I hope you know how much you were, and are, loved. That was one of my constant prayers for you while you were here with us.

We love and miss you, little man. One day we'll see you again.

Love you forever,

Mommy

Overwhelmed

2009-09-11T18:29:00.002-05:00

Overwhelmed by all the thoughtful sentiments; overwhelmed by all the support from family, friends, and strangers; overwhelmed by all the pain and tears; overwhelmed by all the blessings we have been given. These are my thoughts today. Love you all, jc

'Bama and Birthdays- Planning for Mav's Special Day

2009-09-09T17:25:00.005-05:00

I made it back from Alabama. Three of my girlfriends went - Amy, Dejah, and Dovie. They went running around while I was in class and we all hung out together in the evenings. It was such a nice trip. I'm so glad they went with me - do I have amazing friends, or what? The first night class let out kind of late, but I really wanted to go to the beach. We went, but by the time we got there it was dark :( This pic is a bit blurry - my camera had a hard time focusing at night.

It was still so peaceful and beautiful - even in the dark. Something about beaches makes me relax. Maybe someday we'll have a home by the beach - okay, really, I'd be satisfied with just an occasional vacation there.

I learned a lot in the classes: how to suture (put in stitches), how to do coding (for billing), how to suit up for a bio terrorist attack (it's some kind of new requirement for NP programs), how to do pelvic exams (fyi - it was on a simulator/dummy), and I learned all I could ever want to know and more about STD's.

The last day of class we got out a little early and were able to get to the beach before dark. I am so glad the girls went. I would have been lonely without them. We were all ready to get back home to see our hubbies and kids, though.

Greg and the kids did well. Maddie didn't start dance until this week, and Chloe starts next week. Chloe started Mother's Day Out while I was gone and she loves it. I picked her up today and she got in her car seat, let out a sigh, and said, "I'm exhausted!" Oh, the life of a preschooler... We're trying to keep C-man in line with his school work, so he's not in any sports right now.

My birthday was yesterday, but I'm not counting them anymore. We had a September birthday party with Greg's family Saturday. My b-day is on the 8th, Mav's is on the 12th, Marilyn's (Greg's mom) is on the 13th, and Chloe's is on the 29th. It's kind of been a rough week - my birthday without one of my kids and Mav's special day coming up. We couldn't decide what to do. We didn't want to not celebrate it. He's our baby and we celebrate all our other kids birthdays. We talked to the kids last night about what they wanted to do. They want to have a cake, then let go of balloons at the cemetery. I know there will be a lot of tears shed on that day, so I think it will probably just be us. If you'd like to remember him by sending up a balloon where ever you are, I'd love for you to send me a picture of it. I'm making some little notes to attach to our balloons and on the back of the notes I put the blog address and these CHD facts:

Anyone can have a child with a congenital heart defect. Out of 1,000 births, nine babies will have some form of congenital heart disorder.

Congenital heart defects are the most common birth defect and are the number one cause of death from birth defects in the first year of life. Nearly twice as many children die from congenital heart disease in the United States each year as die from all forms of childhood cancer combined.

www.babymaverick.blogspot.com.

I don't know if anyone will ever even see these, but if they do, they'll be a bit more aware of CHD.

Here's why we're doing the balloons. We have a tradition that we've done with all the kids. Around their first birthdays we take them to have their picture taken with a cake and balloons. The pics were all taken at the same place with the same backdrop and the cake sitting on the same stool. It's fun to look at all of them at the same age and see how similar and different they were. We can see who was tallest by their relation to the stool height. They are hanging in the hallway. We won't be able to do that with little Mav, so these are our balloon pictures for his birthday. Here's my email address if you want to send any balloon pics: julesclarko@yahoo.com.

Sweet kids

2009-08-28T19:39:00.005-05:00

Once again, the week has flown by. The pics of the kids were from last weekend. They had sooo much fun playing outside on the "Belly Slide" - as Chloe calls it. We found a recipe on the internet for body paint, so we made some and that just added to the slippery-ness of the slide. It was cheap entertainment. They played outside for a couple of hours. Chloe wanted a butterfly on her back (the purple paint didn't turn out so purple).

Here they are with the paint. If you're interested it was 1/4 c. dishsoap, 2T cornstarch - stir together until smooth, then add food coloring. I made sure to tell them to keep it away from their eyes. After making it, I thought of using baby shampoo as an alternative. We'll try that next time.

Here's a video. They're all painted up and having fun.

I experimented on our dog, BamBam this week and gave him a haircut. He didn't seem to mind too much. His haircuts cost more than mine, so I decided to give it a try.

When I haven't been busy with the kids or Greg or the dog, I've been doing homework and studying. Some of my assignments are due at the end of next week, and I wanted to finish them before I leave for Alabama on Sunday. I'll come back on Thursday. Two of my friends, Amy and Dejah are going with me. The beach isn't far away, so they'll get to soak up some sun while I'm sitting in class. I'm supposed to be finished by 5 or 6:00 every evening, so I'm hoping to see the beach at some point while we're there - that's why I wanted to finish the assignments early. One friend asked me who would be taking care of the kids while I was gone. I said, "Greg." She acted suprised and said her husband wouldn't do that. Greg was taking care of Maddie, Carter, and Chloe for 24 hours at a time when Chloe was six-weeks old. That's when I went back to work. He's a very capable daddy.

Speaking of work, I may start looking for something part-time after I return from Mobile. I have a few things to check into when I get home.

While I'm gone, Chloe will start Mother's day out and both the girls will start dance. They are both so excited. Chloe's been putting on her dance clothes and dancing on the window seat in our bay window - it's her stage. She's such a ham. The girls have also become my study-buddies. I was watching several physical exams on infants this evening on the internet and had the earphones plugged into the computer. The kids had the Disney channel on, but Chloe wanted to sit beside me watch the exams. She put in one of my earphones and watched with me for about 30 minutes. Earlier this evening, I was looking at an amazing site on the heart and Maddie sat with me and asked questions while I went over that info. Maddie asked if she would learn this stuff (about the heart) in the eighth grade. "Ummm, no." I told her. "Maybe when you go to college." It's amazing how curious and ready to learn kids are.

Carter found a new spot to read this evening. He's not really fond of reading, but I guess it's more fun if you're up in a tree. He had climbed up pretty high in the magnolia tree in our backyard. That's where I found him when it was time for dinner. As long as it makes him happy and helps him enjoy reading - I'm all for it.

I spoke with one of our favorite nurses on the phone this evening. It was so nice to hear her voice. She became like family to us. She told me about a dream she had a few nights ago about Mav. She said he was sitting up in his hospital bed laughing - he had his monkey. No tubes - she said she was playing with him. Soooo sweet. I miss our sweet boy. Here's a pic of him and his daddy from Greg's phone.

Well, enough for tonight. Have a good weekend. Love you all, jc

2009-08-22T01:00:00.003-05:00

Whew! This week has been a whirlwind. It was the kids first full week of school and mine as well. We have been very busy. Maddie is enjoying school. Carter is enjoying recess. Chloe enjoys having me to herself. This afternoon she said something about wanting to go with me to take the kids to school tomorrow - which by now is today. I told her tomorrow was Saturday and they don't go on Saturday. She got a disappointed look on her face. I asked her if she was upset they weren't going to school and she shook her head yes. She's kept me smiling. A couple days ago I asked her what she wanted to eat for breakfast. I gave her four choices and held up four fingers (breakfast bar, cereal, waffle, or toast). She looked at me and slightly squinted her eyes and said, "What's that one?" as she pointed to my thumb. I said "That's not one," and went through the choices again. She said, "I know what that one is..." and then went on, "I would defeee (definitely) eat a pupcake (cupcake)." I couldn't help but laugh.

She and Carter have been having fun playing in the water after school. They put our old slip-and-slide at the bottom of a slide. They call it the "belly slide." I caught Chloe lathering up out there the other evening. She snuck in the house and took the shampoo outside.

Maddie and Chloe signed up for dance this week. They are both looking forward to it. They start the first week of September. That's when Chloe will start mother's day out. I'll be gone to Mobile Sun-Thurs of that week for orientation for the clinical component of the nursing program.

We finished up Maddie's furniture last weekend. We're going to get it arranged in her room this weekend. I'm sure she'll put some pics of it on her blog. She did a great job on it.

Reading, studying, writing papers and doing quizzes is consuming all my extra time - and it's only the first week of school. It's a good kind of busy, though. In my studying I'm coming across many things that take my mind back to Mav - different lab values, heart defects, renal issues. I think about him a lot. It's nice to know that someday soon I'll be able to do more to help other kids who may be in similar circumstances. I had to write a paper on my personal philosophy of nursing this week. His life has made a huge impact on that aspect of my career. When I get it completely finished and turned in I'll post it for you all to read.

Isn't this sweet? This is a picture I downloaded from Greg's phone. He had so many pictures on his phone that we hadn't transferred until a week ago. It is one of my favorites. We still have some on the camcorder that we haven't even looked at yet. Maybe soon. Mav's birthday is coming up soon. It's so hard to believe it's almost been a year since he was born. We're still trying to decide what we want to do. I know it will be a tough day, so we may just keep it simple.
I think we might release some balloons at the cemetery.

Greg is staying busy with work. His back is still bothering him. We're waiting to find out if the insurance will cover a pain pacemaker. It's an electrical stimulation unit that works by blocking the transmission of the painful stimuli from his back to his brain. Hopefully, it will be approved and give him some extra relief.

Hope you all have a good weekend. Love you all, jc

Quick update

2009-08-14T16:59:00.001-05:00

Just a quick update to let everyone know Maddie's biopsy results were fine. Thanks for your prayers. This is a relief.

First Day of School

2009-08-12T22:31:00.003-05:00

It's hard to believe we have a seventh grader and a third grader. They were ready to go this morning.

Here we are at the school. I take this same picture every year. The kids tolerated it pretty well.

Carter at his desk - ready for the day.

Maddie at her locker. Notice the wrapping paper on the door for decoration.

Where was Chloe? She was at home snoozing. Greg stayed home so she could sleep a little later while I took the kids to school. I took this after I got back. We had a good day together. We didn't go to Benedict Street today - maybe Friday.

The kids both had a good day at school. We didn't get the results from Maddie's biopsy today. When I called they said they weren't in yet and they would call me back on Friday. Just a quick post for today. More later. Love you all, jc

Quiet.

2009-08-11T22:23:00.002-05:00

Quiet. That describes the house tonight. The first day of school is tomorrow. We're all inching back into a routine. The kids were all in bed by 8:40pm. I don't remember the last time that happened. It's nice, but also well, just quiet.

The past few days have been spent preparing for tomorrow. Monday was "Carter's day." We spent the morning with the girls and grandma (Greg's mom) - our SUV had tire issues so we didn't have a vehicle until the afternoon. We had lunch together and by that time the vehicle was ready. Carter wanted to go to the skate park. We went to Kidspace here in Shawnee and stayed about an hour. It was hot, but he was having a lot of fun. We stayed until I got the creeps. An older man showed up on a bike and started riding the ramps with the kids. I just didn't have a good feeling about the situation, so we left. There were some other adults around, but seriously, if you have a child, please don't drop them off at the park or let them go by themselves. Your kids are too precious to let something happen to them.

I thought I had heard that the nearby town of Tecumseh had a skate park, so we went there. They had a nice one and we were the only people there. C-man had a good day.

Today I meant to get up early to do a trial-run for school, but it didn't happen. I couldn't get to sleep last night, so I slept in this morning. Greg got up and ready for work and brought us home breakfast from Braum's. He went to work and we stayed here for a while and enjoyed a visit from my dad and grandma. Then we went to the school so Maddie could fix-up her locker. After that we made a shopping run to try to find shoes for Maddie for school. Nothing like waiting til the last minute. We wrapped up the afternoon with snow cones.

Tonight was back-to-school night. Carter found his classroom and his desk and talked to his teacher. I think we're going to have a great year. He seems excited about going back. Maddie knew all her teachers from last year, so not much excitement from her. I think Chloe would probably fit right into the pre-K class, but her birthday is Sept. 29 so she she doesn't start until next year.

I told Chloe that it would just be me and her for a while. Her mother's day out doesn't start until Sept. 1. I asked her if she was going to miss Maddie and Carter when they started back to school.
Her reply, "Maybe just a tiny bit" as she pinched her thumb and forefinger together with only a tiny space to keep them from touching. She later asked me if she could have a day after the kids went back to school. She said, "Maybe we could go to Benec Stweet." If you don't already know, Benedict Street is our favorite place for lunch - and she loves the little cups of coffee. I said, "Maybe."

While sitting awake last night I decided to start reading another book. I found this one while going through stuff for the garage sale. I bought it several years ago at a Christian women's convention and had started reading it, but for whatever reason it didn't grab my attention. It's grabbing it now. The name of the book is "Fresh-Brewed Life" by Nicole Johnson. I'm in a coffee kick now, so the title is fitting. I actually got up from my chair at two in the morning to find a highlighter to mark in this book. I've never been someone to mark in books, so for me this is big. I've really been struggling with the loss of Mav and feel kind of stuck. I know what path I'm taking next, but I feel spiritually stuck. I feel betrayed. I feel like I had all the faith in the world that Mav would be healed and I was let down. I was crushed - I am crushed. One year ago I expected to be toting a baby boy along with us tomorrow on the first day of school - an eleven-month-old to be exact. Eleven months tomorrow. My plan was not God's plan. I don't know why. I've read books and listened to sermons that make me feel better for awhile, but I know this is going to be a long process - a life-long process.

Back to the book... The first thing I highlighted followed a story about a woman sunbathing on the roof of a hotel. She decided no one could see her up there, so she slipped out of her bathing suit for a better tan. The assistant manager of the hotel was out of breath after running the stairs to inform her that she was lying on the dining room skylight. Here's the following paragraph - parts of it I highlighted:

"Talk about exposed! It's terrifying until you realize one thing: when you're naked, you've got nothing to hide anymore. When you're empty, you have nothing else to be taken away. When you tell the truth, it sets you free. So, I made my decision to stop pretending."

As we've been going through life without Mav I've found myself pretending frequently. Pretending everything is okay. Some days are better than others, but I miss my baby. Greg misses his son - he's mad and I'm sad. I'm not saying our life is horrible now. You can look at the pictures of our other beautiful kids to know we're blessed. Life is so different now, though. What's been hard for me to realize through the years is that people are pretending everyday. They pretend their lives are fine, hiding their flaws or struggles from everyone around them. I have been naive enough to believe them in the past and have wondered why our lives aren't as perfect as theirs. When the truth comes out, you realize everyone is "normal" until you get to know them.

The next highlighted area of the book is as follows:
"The darker the roast of the coffee, the more intense the flavor. It stands to reason that for a rich, strong life, we are going to have to go through the fire."

It then goes on to reference 1 Peter 1:3,6-7:

"In this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials." These trials have come, the Scripture says, "so that your faith - of greater worth than gold, which perishes even though refined by fire - may be proved genuine." This genuine, refined by fire, holding-on-for-dear-life faith will result in praise and glory to Christ.
We are the beloved of God. We will go through trials, but we can submit to them so that our faith, the most precious thing we have, may be authentic. When people see our lives, they know we are honest people. Suffering makes us real, and that brings glory to God.

I'm holding these scriptures close right now and I love the way this book presents them. Well, it's late again. I'll try to update tomorrow with our annual "First Day of School" pictures. We should find out about Maddie's biopsy results tomorrow as well. Love you all, jc

2009-08-09T21:58:00.005-05:00

We've had a good weekend. Friday evening we went over to Greg's Aunt Sheila and Uncle Bob's house for a cookout. Most of the people from his dad's side of the family were there. Unfortunately, we haven't gotten together with all of them in several years. We had a wonderful time and I'd like to think little Mav played a part in making it happen. When he was in the hospital several of our relatives from Greg's side of the family came to sit with Mav in the evenings at the hospital. We've all become much closer since. I've loved getting to know them all - they're wonderful people. The kids had a great time playing with their cousins. I remember playing with my cousins as a child and what fun it was. I want that for the kids.

There were two sweet babies there - both were Sheila and Bob's grandchildren. Chloe tried to take over the care of little Kayleigh. Little Cooper was tired and was trying to go to sleep, so he was off the hook. Chloe got in on K's bath and fed her a bottle and helped put her in her jammies. She (Chloe) enjoyed it sooo much. Thanks to her parents Kasey and Paul for being so tolerant of her "help." Little K seemed to be okay with it, too.

Chloe helping with the bath - Miss K wasn't having such a great time at this moment.

Little Miss K loved Maddie's sparkly shirt.

Cooper is the son of Jill and Justin. They live in Texas and Justin visited us and little Mav a lot while he was in the hospital. It was great to see them and their sweet baby boy. This was the first time we got to meet both the babies. Thanks so much to Bob and Sheila for hosting the event. We really enjoyed it.

Greg with baby Cooper.

I think Carter wore Justin out. They played "washers."

Saturday was spent working on Maddie's desk and cleaning up Chloe's room. I'm still trying to get stuff ready for a garage sale. Hopefully I'll be ready this weekend. That may be a bit ambitious - we'll see. The pile in the garage is definitely growing.

I had a hard time getting to sleep last night, so we slept in this morning. Tonight is the last night the kids are staying up late. We'll try to get everyone (myself included) back into a routine before school starts on Wednesday.

The girls and I went to a wedding shower this afternoon. Greg and Carter had some male bonding time. C-man and I are having some time together tomorrow. When Maddie and I got home the other day from our "girls day" he asked when we could have our day together. Awww - isn't that sweet? So, tomorrow is our day and I'm sure we'll spend most of it at the skate park. I haven't looked at the weather, but I hope it's not as hot tomorrow as it was today.

I just finished reading the Sunday paper. There was an article about a patient in London who received a heart transplant at five months old. They left her original heart in hoping that the new heart would allow her own heart time to heal (she had two hearts in her chest). They've recently removed the donated heart and her heart is functioning well and has healed. She's now sixteen and is playing sports and living a normal life. I hope someday there are even more options for babies with sick hearts. Here's a link to the story if you're interested.http://www.wtopnews.com/?nid=106&sid=1717022

Here's a sweet video of our sweet baby Mav.

2009-08-06T22:19:00.004-05:00

Yesterday was five months and twelve days since Mav passed. The same amount of time he was alive. So, today it's official, he's been gone longer than we had him with us. I know I shouldn't get hung up on days like that, but it's so hard not to. I miss him so much.

Tuesday one of my friends came over to help me get some things organized and cleaned out for the garage sale. We went through Carter's closet. Actually, she went through Carter's closet. A lot of Mav's clothes are still in there. She put them all in one drawer together. We both cried. It was nice to have someone to cry with. It was nice to hear she missed him and she didn't understand why either.

Yesterday Maddie had her biopsy done in Edmond. The oral surgeon didn't think it was anything to worry about, but I'm supposed to call next Wednesday for the pathology results. Since we were there and didn't have Carter and Chloe with us we made a day of it. Every year before school starts we have an annual Girls' Day. We did a little back-to-school shopping and had lunch together. We had orders from the oral surgeon's office to have something cold - that meant Baskin Robbins again for Maddie. She's doing fine today and hasn't complained about her mouth at all.

I can't believe the kids start school in 6 days. This summer has flown by. I'm really not ready for the kids to go back to school yet. I ordered my textbooks for nurse practitioner school tonight. I'll start school on the 17th. I'm ready. I just need to get a few more things completed around here.

Today we cooked a lot. I don't know what's gotten into me, but I decided to make bread. Real homemade bread with yeast and everything. It turned out perfect and I was astonished. So were the kids. Maddie made homemade granola bars that were great. We also made Ms. G's famous ham. It turned out perfect. Maybe I'm not such a bad cook after all...

Love you all, jc

"It smells like Baby Maverick..."

2009-08-03T23:50:00.000-05:00

"It smells like Baby Maverick out here," I heard Chloe say as we were getting out of the truck late tonight. She's my child who always smells everything. She'll smell your breath and ask if you've been eating "x" and she's usually right. She'll smell perfume on someone walking by in a store and say, "She smells like grandma." She has a very sensitive sense of smell. It caught me off guard when she said this. We had just driven outside of Shawnee to pick up Carter. He decided late this evening that he didn't want to stay at his friend's house for a second night. It was dark outside, but the light of the full moon was bright enough for me to see her looking up at the sky and breathing in deeply to capture the scent. She said it again and again as she spun around on the driveway with her arms outstretched, looking up at the stars. I finally said,"Maybe he's telling you goodnight." She looked at me for a moment then looked back up and started spinning around again yelling, "Goodnight Maverick! Goodnight Maverick! I love you!" Then I said it too with a tear in my eye.

I'm continuing to work on cleaning and de-cluttering. I'm getting closer. I may call for some help tomorrow - my friend, Dianna wanted to come over tomorrow so the boys could play. She's good at organizing things and I'm not. I know my weaknesses and that's one of them. That play date may help me get a lot accomplished - get ready Ms. Di.

Maddie's still working on her room. We found a desk at a thrift store the other day for $14.98. It needed sanding and painting. I taught her how to use the palm sander and she's been tackling that task. She enjoys learning how to do things and likes to do them herself. She'll be well equipped for the real world someday. I'm so proud of her. I'm so proud of all of them, it's fun to watch them learn new things and grow up. I just wish time would go by a little bit slower.

Maddie, Chloe and I went to Edmond today for an appointment (Carter was at his friend's house). Maddie had a dark spot show up on her palate (the roof of her mouth), so our dentist wanted her to see an oral surgeon. He thinks it's just a "freckle," but just to be sure we're having a biopsy done on Wednesday. They'll send it off for pathology and we should know something in a week. Keep her in your prayers. Our dentist told us the chance of it being something bad was "like the chance of winning the lottery... But someone has to win the lottery." With our luck in the past year I wonder if maybe I should start buying lottery tickets, hmmmm.

While we were sitting in the waiting area, Maddie was skimming through an Edmond magazine. She spotted an ad for Baskin Robbins and about went wild. She loves Baskin Robbins and has since our trip to Colorado several years ago. They're kind of hard to find in Oklahoma. She pleaded to go by there before we went home, so we did. That made their day. Chloe wanted to bring home an ice cream cake. I kept telling her that it would melt by the time we made it home. She tried to talk me into it by saying that we could eat it quickly on the way home. She's such a funny little mess. I would have taken a picture, but my phone is having technical difficulties.

I guess my phone finally got tired of being dropped. Now whenever someone calls, they can't hear me very well. To demonstrate, Maddie called me from my phone and her voice was so garbled, it was difficult to figure out what she was saying. We had an extra phone here, so I put my SIM card in it. It takes pics, but they're horribly blurry. There's also not a complete keyboard for texting, so I am handicapped when I try to text. It takes me forever. Greg just let me know my contract is up so I can go in anytime and get a new phone. I would really like another one like my old one (Blackjack). I had just learned how to do most of the things I needed. Greg says there are so many nicer ones out now. I need something fairly easy. I just read over this paragraph and I sound whiny. It's hard to believe that we used to get along just fine without cell phones. Do you remember the very first ones that looked like you were carrying around a brick? I remember going into a store with a guy I was dating when cell phones just came out. He walked around that store talking on his brick-like phone and I remember thinking "What a dork. He's trying to impress everyone with his new technology." That was obviously BG (before Greg). He would have never done that. Now everyone, myself included, do it.

Speaking of my hubby, his legs are really bothering him. He's now having some numbness and pain in his legs and feet. It's due to his back, but these symptoms have just started in the past couple of weeks. Keep him in your prayers, too.

Love you all, jc

Cleaning Closets, Stunt Devils, and Chloe's Sleepover

2009-07-30T22:44:00.003-05:00

We've been cleaning. I've gone through two closets today and have added a lot of stuff to our garage sale pile - umm, mound would be more appropriate. We're planning on having one in the next few weeks or so. I've only had one other in my life, and that was before kids. I always get stressed out going through that much stuff and trying to organize and price it. I usually end up sending it to Prevent Blindness or the Goodwill. I'm in the mood to do it this time, though. I want to simplify things before school starts. We have waaaay too much stuff.

Maddie left today for Princess Day with the middle school girls from our church. They're at Lake Eufaula having a great time. It's nice to see her having fun again. They'll be back tomorrow evening around 6:00. Carter has his friend, Kirk, over. His mom, my friend Dianna, went with the girls.

Those boys crack me up. They've dubbed themselves the Stunt Devils. They've been playing on a scooter and skateboard outside on and off all day. Carter has a small ramp, but to hear them talk about their tricks... "I did a flip in the air," and "I jumped high, then rolled and heard my elbow go 'crack'." They both add to each other's stories. We're going to the skate park tomorrow. They say they're going on the big ramp, but we'll see how brave they are when they're staring down the slope.

Chloe was invited to her first sleepover last night with her friend Dassie. Before we left the house she asked me, "When it's time for bed can you come and cratch my back?" Isn't that sweet? I had to break it to her that I couldn't come over to 'cratch' her back before bed. I dropped her off and as soon as she got out of the car she said, "Bye, mom." She's stayed with the Mays before, but never without Maddie or Carter. I got the call about 1:30am. Poor Dovie and Rodney (Ron-dee as Chloe calls him). This is my public apology, sorry, I owe you guys. She had a lot of fun while she was there, though.

I got a call from West Memorials and received an email with some more pics of headstones they've done. They're beautiful. I'm going to check one other place and then we'll decide who to go with. We're ready to get started on Mav's gravemarker. I think we want several pictures on it. The polished granite with etched pictures looks really nice.

Well, enough for now. Love you all, jc

Moving the Crib and My Heart Check-up

2009-07-27T23:55:00.000-05:00

Maddie has wanted her own room for quite awhile now. We finally caved this weekend and did some re-arranging of the rooms at our house. We have an extra living room that we moved our room into and she now has our old room, leaving Chloe in their room. Thanks to the Quinns for helping us move everything. We took the crib out of Carter's room and re-configured it for a daybed for Chloe's room. I think that was easier than taking it completely down and seeing it in the garage.

Maddie has been painting bedroom furniture for her room. The bed they shared was bright bubblegum pink and didn't match the bedding her grandma bought her, so she painted it. I taught her all the tricks of painting and she took off and did a great job on her own. I'll put some pics of it on here when she's finished.

I had my cardiology check-up today with Dr. Ward. They did an echo in the office. The device is in the right place and there is no flow around it - which is great. The echo and EKG both showed my heart looks completely normal - no abnormalities at all. No damage from all the years walking around with an ASD. That's nice to know. I got sad driving back home in the rain. I wish I would've been taking Mav up there for a check-up.

I got a big box of pictures out of the garage tonight. One of the projects I want to finish requires finding some specific baby pics of Maddie. I've already finished the pics of Carter and Chloe. Maddie's weren't in the box. I know they're out there somewhere. I just haven't found the right box yet. We had a great time looking at all the pictures, though. I can't believe how quickly they've grown.

Love you all, jc

PS Martha - Can I post the beautiful poem Bob wrote? I saw it on Mitch's blog.

Great book for dealing with the loss of a child

2009-07-24T23:22:00.003-05:00

My friend, Kim, came by this morning and went to the cemetery with me. It's still hard to go, but I still feel like I need to. Greg and I have been talking more about his grave marker and I checked out a couple of places here today, but they didn't have what we were looking for. I put in an email to one of the companies I listed in an earlier post (one that does custom work), but I haven't heard from them yet. Maybe I'll be able to talk to them about what we want without crying.

I sat down this evening and read the book Greg read yesterday. It's called, " Tracks of a Fellow Struggler - Living and Growing through Grief" and was written by John R. Claypool. He's a pastor who lost his 10 year-old daughter to leukemia and it's a collection of some sermons he did while going through the different stages - diagnosis and treatment, remission, recurrence, and death. It was a great book and helped both of us out a lot. Thanks, Todd. I would definitely recommend it to anyone going through this. I've read different books on grief, but this is by far my favorite. Basically, it let me know that it's okay to wonder why and to not understand. He did the same thing. By the end of the book, his last sermon is about how life is a gift. We did nothing to deserve it - we did nothing to get the gift of our children, either. We should enjoy each day. Here's an excerpt from a sermon that's toward the end of the book.

"Two things that radically altered Job's situation emerged out of this encounter, and they proved to be the catalyst that enabled Job to move through his grief back to wholeness. One was a new understanding of the past, and the other was a fresh vision of the future. Let us look at them both.
The first thing God did was to call into question the "justice-injustice" approach to the mystery of life. God began by asking Job where he had been when the whole drama of creation had begun. What had he done to create his own life, or to call the universe into being, or to make possible the existence of his possessions or his children or his health? In other words, God was reminding Job that the things he had become so indignant about losing actually did not belong to him in the first place. They were gifts - gifts beyond his deserving, graciously given him by Another, and thus not to be possessed or held onto as if they were his. To be angry because a gift ahas been taken away is to miss the whole point of life. That we ever have the things we cherish is more than we deserve. Gratitude and humility rather than resentment should characterize our handling of the objects of life. This important lesson is one all of us need to learn...."

I liked that he was honest throughout the book in his thoughts and in his sermons. I won't go into any more detail, but I think it's a great book for anyone to read. I really liked how he discussed the questioning of why.

I went to the bedroom to read the book so I could have a little quiet. Chloe came back to join me with her babies. Quiet isn't in her personality. She brought me her babies to watch and told me they had "pwoblems wis deir heawts," but they would be fine and she would be just across the street if I needed her. What an imagination - she keeps us on our toes. They are all such blessings.

Hope you all have a great weekend. Love ya, jc

Cleaning and Coping as a Couple

2009-07-23T17:31:00.005-05:00

We enjoyed the last day with our nephew, Cooper. He went home today after we did our cheap movie day at Bricktown. I know Carter will miss having him around.

Maddie and I started cleaning out the garage after we got home. That's one of the things on my "to do list" of things to get accomplished before school starts. It will take another day or so. There are baby items out there that Mav never got to use - an exersaucer, baby toys, not to mention all the items still left inside the house. I'm not quite ready to get rid of all of them. My friend, Kim, came over tonight and assured me that that's okay. Greg has told me this before as well. There's no timeline on how or when I need to do certain things. No timeline on how to grieve.

I've had a few people ask how we're doing as a couple. Through this process we've realized that we each grieve differently. I think any couple going through this has to accept these differences to make it through the loss of a child. We've been fortunate that we haven't had problems in this area, and I feel like our marriage is stronger now than it's ever been. We're both suffering the same loss and it's comforting to have each other's shoulder to cry on when we need to. I can't imagine getting through this without him. However, I could see how having specific expectations from your spouse (expecting them to grieve like you do) during this time could set you up for many battles. I think if you don't have expectations, you won't be disappointed. I'm going to have good days and bad days and so is he. Eventhough we each deal with our loss differently, we're both on the same team. Our battle is the same, but our weapons are different. I would never wish this on anyone, but if you're going through it, I hope these words will help.

Tomorrow will be five months since Mav died - almost the same amount of time we had him here. Greg and I have talked about this several times, and in some ways it seems like it was an eternity ago, and others it seems like yesterday. It's been quite awhile since I've made a call to the hospital before going to bed - hoping to hear that the last blood gas was better than the one before. I still remember the anxiety I had when making these calls. The panic we'd feel when the phone would ring in the middle of the night. The peace I would feel when I got to hold him. This still really sucks. I don't think the pain we feel has gotten any better, I think we've just gotten better at dealing with it.

Greg had lunch with our pastor, Todd, today. He gave him a book to read. It was written by a pastor who lost a daughter to cancer. I think Greg said the book is some of the sermons he did while going through the battle and after the loss of his daughter. He's reading it right now. I'll probably start reading it tomorrow, and I'll give you more details then. Honestly, we're both pretty mad that all this has happened. Just speaking for myself, I don't even know what to pray for right now. I believed with all my heart that God would heal him and we would have our baby to take home, and that didn't happen. I don't get to know the "why," and that's hard.

Greg's read the book - he tells me I need to go read it. Enough for now. Love you all - jc

Family, Friends, and Remembering

2009-07-21T19:39:00.005-05:00

Wow. It's been awhile. We've been pretty busy. I had lunch with my Mediflight friends in Bricktown on Friday. It was great to see everyone. Saturday, the kids and I went to see my family at my uncle David's house. The kids got to see their cousins they hadn't seen in years. They had so much fun. I enjoyed seeing everyone, too. My dad has three brothers and one sister. All the brothers were there, but my Aunt Jeanne wasn't able to be there (she lives in New Jersey). I got to see my cousin, Michelle. She's a few years older than me. I remember cruising with her one night when we were both at my grandma's house. Fun times... Anyway, we didn't get home until after midnight Saturday night, so we slept in on Sunday.

Kids on the teeter-totter at Uncle David and Aunt Vickie's.

Kid and cousins. Sara (friend), Maddie, Chloe, Noelle, Chelsea, Rachel, and Carter.

Monday we met my stepdad, James, to pick up our nephew, Cooper. He's five. Carter and he have been having a blast. It's taken me a while to learn, but if kids have compatible personalities, it's often easier to have an extra or two around. He and Carter have been playing and staying busy. I've hardly heard a peep - okay, that's a lie - they're boys. I've heard lots of "peeps", but you get what I'm saying.

Monday night my girlfriends and I went out to celebrate July and August birthdays. We went out to eat Italian and ended up staying in the parking lot talking for an hour and a half. I know if someone would have been videoing our parking lot discussions, they would have been a hit on you tube. The girls make me laugh. I really have an amazing group of friends.

I had a few rough days, but the past few have been okay. For me, I have to be busy. I have lots of projects to wrap up before school starts. The kids start Aug. 12, and I start Aug. 18. I've decided to stick with the master's program for now. I'm going to do it full-time and I'll be finished next December (December 2010). That will allow me to get back to work sooner. I can then work on the doctorate program part-time while working.

Yesterday my dad and grandma came to visit with the kids and me. Then my friend, Kim, from Houston came into town. She and her kids stopped by to visit and then we went to get snow cones. She and I were pregnant with our first kiddos at the same time. She got me hooked on blackberry and cream snow cones at that time - yum.

Carter, Maddie, Wil, Carter (yes, two Carters - wouldn't that be funny if they got married someday - Carter and Carter Clark?), Chloe, and our nephew, Cooper.

I've had quite a bit of good advice lately that I'm going to share. When my gran and I were talking the other day while watching the kids play. She told me, "Enjoy them. They'll be grown before you know it." Then I asked her what fun things she did with her kids when they were little. She didn't answer directly, but told me, "I wish I would've done more with them and worried less about my work" referring to work around the house. She's a wise woman.

Late the other evening, I talked to my Aunt Vickie. She lost a baby many years ago. I wish I could remember her exact words, because I've been pondering them since that night. She said something to the effect of, "Let his life make a big impact on yours. It doesn't have to make a big impact on the world." Regardless of what her exact words were, they have stuck with me. I think it's probably normal to want to make something big out of a tragedy like this. I can tell you first-hand, I don't want people to forget about him. She also told me she saw someone the other day and was talking to him. He couldn't figure out how they knew each other and she mentioned my name and he said, "Baby Maverick's mom." I don't know why, but I loved hearing that story. As moms, we're always used to being referred to as "Maddie's mom" or whatever your child's name is mom. I was just glad to be remembered as Maverick's mom. I've seen this poem on the web in many different places, so I'm going to post it here. I thought it would be appropriate for this post. Enjoy.

Remembering

Go ahead and mention my child,

The one that died, you know.

Don't worry about hurting me further.

The depth of my pain doesn't show.

Don't worry about making me cry.

I'm already crying inside.

Help me to heal by releasing

The tears that I try to hide.

I'm hurt when you just keep silent,

Pretending he didn't exist.

I'd rather you mention my child,

Knowing that he has been missed.

You asked me how I was doing.

I say "pretty good" or "fine".

But healing is something ongoing

I feel it will take a lifetime.

~ Elizabeth Dent ~

Love you all, jc

The kids are back

2009-07-16T21:34:00.002-05:00

Whew! I'm glad the kids are back. They had fun with their grandma and grandpa, but the house was quiet last night. When it's quiet, I get sad and miss our baby even more. The busier I am, the easier time goes by. Greg and I were both happy to have them back this evening.

They came back around 11:00 and Greg's mom, Marilyn, and the kids and I went to eat lunch at McAlister's Deli. We then went to JCPenney and shopped around a little. Not too much excitement, but we had a good time.

The big excitement for the day was Maddie getting her braces removed. She was sooo nervous. It didn't help any that Carter was sitting in the room telling her he hoped they didn't pull out her front teeth while they were trying to take her braces off. He just kept taunting her the entire time. She goes back on Monday to get her retainers placed. The pics are below. Love you all, jc

Braces on

2009-07-16T20:32:00.003-05:00

The last pic with her braces on.

Taking them off

2009-07-16T20:32:00.002-05:00

They're off

2009-07-16T20:30:00.002-05:00

The first look at her pretty smile after the braces came off.

Visiting grandparents and the quiet house

2009-07-15T21:51:00.005-05:00

I've had the chance to have a quiet house today. Greg's mom picked up the kids this morning and they're spending the night with her tonight. Some quiet is okay, too much is too much. I was able to get some errands taken care of this morning. When I got back home I thought I'd start on a photo book for Mav. I got started, but it was a bit too difficult. Seeing that sweet face in so many pictures proved to be a bit too much. I stopped. Greg came home and we talked for awhile. I told him how hard it is sometimes to act like everything is okay when it's not. He said I don't have to act like that. The past few days have just been a bit tough. It's just a strange predicament to be in. I want to enjoy our three healthy happy kids and for the most part I do. There are just these rough patches. A friend told me last night, "Unfortunately, Julianne, it will be that way for a long time."

After Greg and I finished talking, we both went to the chiropractor - what a fun date. A little snap-crackle-pop will hopefully do both of us some good. His back is bothering him a little and I'm having some headaches and neck/shoulder issues again. We attempted to go to the movie this evening, but there aren't many good shows out. We were a bit disappointed.

Yesterday, the kids and I went to see my grandparents. My "pa" is now on facebook, so I helped him upload a few photos and he gave Maddie and me some tips on gardening and starting a compost area. I think next year we're going to have a bigger garden. We went to have Mexican food with my "gran." We really enjoyed seeing them. Here they are:

While there, Carter asked where the stationery bike was in the front living room. I looked over where it used to be and was pleasantly surprised to see this:

This was my great-grandma's chair. She lived to be 103. Many of her grandchildren and great-grandchildren were rocked in this chair, including me. She loved babies just like me and my gran. I remember going to visit her and seeing her rock in her chair. She had really long silver hair and would comb it out and put it in a bun while sitting in her chair by the front door. My gran and I started talking and reminiscing about her. If wish I had all my pics arranged - I could post one of her in her chair.

While there, Chloe showed off her new hair cut. Pa said, "They broke the mold when Chloe was born," while I was taking this picture. He had his hand on her head and she replied, "You know dis is my new hai," (she says hair without the "R" on the end).

I just talked to the kids on the phone and just have to share one last thing. Chloe asked me to put her baby in her shirt and pants for bed. She is here and still has on her dress that she put on her this morning. I'm posting a pic of the kids enjoying their favorite summer treats - snowcones. If you notice in one you can see an infant seat. Chloe has to have it in the vehicle for her baby. I figure it's not hurting anything, so why not?

Maddie gets her braces off tomorrow. She's so excited. I'll put some pics on to show off her new smile. Love you all, jc

Two Worlds

2009-07-12T22:20:00.004-05:00

This image was from our 3-D ultrasound just about a year ago - it's hard to believe it's been that long.

"How are you?" she asks. "I'm okay," I reply. "You're not doing well, are you?" she asks... Just a conversation from earlier today. I guess she could hear it in my voice. I'm sure she realized Mav would've been ten months old today. She knows this type of pain all too well.

We went to church this morning - the music is getting easier to listen to. The last song, however, was "Amazing Grace." It's a song I have always associated with funerals. I'm not sure if everyone does or if it's just a quirk of mine. I had to stop singing and focus on not crying as my eyes started to well-up with tears.

Smiling is getting easier, so are the evenings and nights. Sometimes I feel like I'm in two worlds - one where I'm going through the motions of daily life trying to enjoy things as much as I can and the other where I miss our sweet boy so much that all I want to do is cry. I suppose this is an improvement. I'm not sad all the time now. I've had a handful of days where I haven't cried at all.

The task of the headstone is still looming over my head. I'm a procrastinator. We still haven't figured it out. It just seems like such a daunting and permanent task. I don't think we'll make it for our goal of his birthday. I'm going to do my best this week and make it a priority, though.

Speaking of his birthday... It will be here before we know it. September 12. What do we do? I certainly don't want to not celebrate the day he came into our lives, but I don't think there's a real answer for what's right. I think everyone comes up with what is right for their own family. I've been thinking about a balloon release at his grave. I'd like to do another blood drive as some point as well. I'm open to suggestions. I think it's horrible that we're even having to think about this. I just wish he was healthy and here with us.

On the other hand, I'm glad we had the hope that he would get better. I'm glad we had 5 1/2 months with him. Imagine the parents that know that their baby is facing a terminal defect prior to his birth. Imagine wondering if your child will survive the delivery and if so for how long. I've been following a blog since shortly after Mav's death. At that time it was about RN parents who lost their baby girl during delivery. I just checked back in about a week ago and they had several updates. I just can't imagine what they're going through right now. If you don't want cry, don't click on the link. I promise it will make you appreciate your healthy children, even when they're up five times a night puking or throwing fits in the middle of Walmart. The Thompsons could use any extra prayers you could send their way right now. Here's their link if you're interested http://kinseygracethompson.blogspot.com/.

Love you all, jc

A New Start

2009-07-11T17:07:00.002-05:00

Well, along with Maddie's new adventures in the blog world, I've started a new blog. I'm still planning on keeping our Baby Maverick blog up, but primarily for remembering Mav, awareness and education on congenital heart defects, and helping others who are dealing with the loss of a child. I know many of you are curious about the other aspects of our lives (including the money-saving deals), and out of respect for Mav's precious life I decided to start another site to share those and share our daily adventures. The new site is www.julesfavoritethings.blogspot.com.

2009-07-10T21:50:00.003-05:00

Not much excitement around here. We went to the movies yesterday in Bricktown (with our super deal movie passes) with our friends the Mays. We had lunch in Midwest City and stopped by Target on the way home. Maddie went swimming yesterday evening. Chlo and I took a nap. I didn't sleep much the night before - Mav has been on my mind a lot.

Today we ran some errands and went by CVS and Walmart. We just needed to get a few groceries. Maddie picked several more tomatoes today, so we made some tomato and mozzarella salad with fresh basil and rosemary from our little herb garden. I loved it, Maddie and Chloe weren't too impressed. I don't think they were too fond of the fresh herbs. I also made my favorite beer bread. It's sooo easy to make. 3 cups self-rising flour, 1/3-1/2 cup sugar, 1 can beer, rosemary - fresh or dried to taste, fresh-cracked black pepper to taste. Combine everything and bake at 350 for 50 minutes. Here it is. I make it with spaghetti, but it would be good for sandwiches as well.

Maddie and her tomatoes - grape, cherry and patio.

The plan was to make spaghetti, but no one was very hungry, so I stopped cooking there. Maddie made some yummy fruit pizza and then declared that she wants to be a chef. I told her as long as she cleans up the mess she can cook whenever she wants. She started a blog today to share her adventures. It's http://www.dancergirlsadventures.blogspot.com/. Go over and check it out. She loves to coupon as much as I do, so she shares our good deals there. She had a lot of fun setting it up.

I received some news today from the University of Southern Alabama about a new doctorate of nursing program in acute care pediatrics. For my non-medical friends, it's an advanced nursing degree - a nurse practitioner that works in children's emergency rooms and PICUs. I've always loved the intensity of these areas, so I've sent some questions back to the coordinator to find out some more information. I could switch to this option if I want, but it would take three years full-time to complete.

Carter came back home this evening. He had a great time with his friend, Jack, at the lake. Immediately after he got in the vehicle he asked, "What are we doing this evening?" That is his personality to a T. He and Chloe are camping out in the living room tonight. Here's a pic of them.

Right now they're screaming and fussing with each other. Don't let their sweet faces fool you.

Greg is hanging in there. His back is bothering him some. I know most people don't realize how blessed they are to have their health until something happens to disrupt it. If you're feeling good, be thankful :) Love you all, jc

Funny lyrics and a difficult task

2009-07-09T00:49:00.004-05:00

We've stayed busy this week. Monday I took the kids swimming in the afternoon. Maddie had a birthday party that evening. She spent the night and had a great time. I feel like she can finally enjoy being a normal kid. She doesn't have anything to worry about now.

Yesterday we went to stay with little miss Addie. She was just a doll. Her momma always tells me what an "Addie-tude" she has, but I keep telling Addie her momma is just fibbing to me.

There is a pic of her below. On the way home we were listening to a CD that's a compilation of some of my favorite songs. The kids like them, too. We usually all sing them, but I was thinking and wasn't singing this time. "When a Man Loves a Woman" came on and C-man was the one singing. This is what I heard... "When a maaan loves waaa-ter." I started cracking up and told him what the real words were, then Maddie says, "I thought it said, 'When a man loves a walnut.'" That kept me laughing for several miles. It reminded me of a time I was singing in the car with my mom to a Huey Lewis song (am I showing my age or what?). I was belting out, "I want a new truck..." when my mom started laughing and told me it was actually "I want a new drug." I think it happens to everyone at some point, I think it's probably better to have your mom correct you than your friends.

Maddie also had an appointment to check up on her hand on Tuesday. It was the fastest appointment we've ever been to. Maddie timed it and it took 28 seconds. It looks sooo much better. It was a staph infection, but not the bad kind (not MRSA). It's healing nicely.

Carter has been busy trying to learn new skateboard tricks and trying to talk us into buying him a new skateboard. I think I finally convinced him that all the people that are really good have banged up boards. If the board was new and shiny then they must have just started skating... There's a video of one of his new tricks below. He went to Lake Eufaula with one of his friends today and will be back tomorrow evening or Friday. I know he'll have a great time.

Today we just stayed around the house and cleaned. I finally went through Mav's things. Everything from the hospital was just piled in his crib. Putting his things up was one of the hardest things I've had to do. I cried some, but Maddie helped me stay on task and get it finished. She's the organizing queen. The things that were special to us went in one storage box and the baby things that he hadn't worn went into another. He had so many stuffed animals. We kept the ones he liked the most and I think we're going to give the other ones to the Unzner Center. It's a place children of abuse go to have their exams. They give them a stuffed animal when they're there. We haven't taken the crib down, but I'm sure we'll do that pretty soon. I have a list of things I want to get finished before school starts and that's one of them.

Well, enough for tonight - or this morning by now. I just had to post a few more pics of the kids. Love you all, jc

Chloe's haircut

2009-07-09T00:18:00.003-05:00

Well, Miss Chlo has been very disagreeable about getting her hair brushed lately. Half-way out of frustration I asked her if she wanted to get it cut. She said yes. Here we are. She also requested to have it brown like mine. I told her we couldn't do that. I just love it when they are small and think mom is so cool. I kept her little ponytail. It wasn't quite long enough to send to Locks of Love. Thanks to Miss Jaime for the cute cut. Here's the finished version with gum in her mouth. She was laying in bed with Maddie tonight and Maddie put her arm on Chloe's hair. She quickly told her, "Don't Maddie, that's my new hair."

Skateboard tricks

2009-07-09T00:17:00.002-05:00

Here's C-man doing his newest skateboard trick. He's determined to learn more. He watches videos on you-tube and tries to do the moves.

Sweet Addie

2009-07-09T00:16:00.002-05:00

We babysat Addie Tuesday. She's my sister, Heather's baby. I fed her and she fell asleep. I just held her the whole time she napped. I took this one to send to Heather to let her know she was doing fine, but I couldn't send it to her for some reason. We had a fun time with her. Shortly after we arrived Chloe asked if she could pet her!

More tomatoes

2009-07-09T00:14:00.002-05:00

Here's Maddie's latest crop. They are sooo good. They taste like summer.

Me and the Firecrackers

2009-07-05T22:32:00.002-05:00

Well, here we are on the fourth of July. They are quite the little firecrackers. We went to our friends', the Blacks, house Saturday evening. The kids popped a few firecrackers and then the storm came in. It rained, poured, thundered, and lightninged (is that a word?). The kids didn't get to finish the festivities. We all went in the house - kids playing, adults talking - when the power went off. That's just one of the exciting benefits of living in Oklahoma. We left to go home a little after nine. Miss Chlo passed out in the car on the way home. I couldn't resist taking a pic when I put her in bed. I took some other pics of the kids with my regular camera - I always do on the fourth for some reason. I would have uploaded them as well, but the electricity issues fried our printer and that's how I download the pics. So, I'll save those for another day.

We went to church today, then Greg took Carter and Chloe to the movies. I stayed home to work on arrangements for my school. I have to make a trip to Mobile, AL the end of August to do an orientation for the nurse practitioner program. I'm not the best at making travel plans. I tend to stress over the details. That being said, I still don't have the plans confirmed. I'll have to do that this week. I have decided to do the full-time program. I've been in touch with the director of the pediatric program and explained my background and plans and she has given me her blessing to do the full-time track. That makes me feel better, because so far everyone else was strongly suggesting I do the part-time track. I should be finished December of 2010. I know at some point in the program I really want to do a pediatric cardiology rotation. I learned so much during Mav's life, but there is still so much to learn. It's fascinating, really - the heart. Every organ in the body depends on it and when it isn't functioning properly, it wreaks havoc on many other systems. We saw that first-hand with our sweet baby boy. Maybe someday there will be more options for cardiac issues such as his. I hope so.

Maddie didn't go to the movie with the others today. She and I actually went to a movie Friday night. We went to see "My Sister's Keeper." I read the book several weeks ago. When my friend Kristi came in for my procedure she asked me, "Are you a masochist?" for reading it. If you haven't heard of it I'm not going to spoil it for you, but it was a very good book. Several things just hit close to home. Maddie and I had to leave about an hour into the movie. I could tell it was making her uncomfortable. I think it's rated PG-13. It was the bloody scenes that she didn't like. And to answer my friend's question, I don't think I'm masochistic. Somehow it's comforting to know I'm not the only one going through tough issues. I found several other blogs of people who have lost children and sometimes it's just nice to know you're not crazy.

Hope you all have a great week. Love you all, jc

The Littlest Firecracker

2009-07-05T22:31:00.000-05:00

Passed out.

Lessons learned in the blackberry patch

2009-07-03T23:23:00.004-05:00

It has been an eventful week full of doctors' appointments (four to be exact), the last baseball game of the season, and blackberry picking. I know I'm leaving things out, but I'm sure they'll come back to me as this progresses.

Monday started off with an epidural for Greg. His back has been acting up a little due to a trip on our little get-away a few weekends ago. While Greg was at his appointment, I took Maddie to get an event monitor for her heart. Her heart was structurally fine, but since she has had complaints for several years, Dr. Ward wanted her to wear an event monitor for a month. It's just a little device that has electrodes that go to her chest and a monitor a little bigger than a pager that she wears on her waistband. She pushes a button whenever she has an episode.

Tuesday yielded a trip to the pediatrician for Maddie. She developed an infection on her hand and was placed on antibiotics.

Wednesday was my trip to the doctor - just for "girl stuff".

Thursday morning we went to a movie in OKC with our friends. Maddie's hand wasn't looking any better, so we went to have it incised and drained that afternoon. She was nervous, but was very brave and did great. While we were waiting for the procedure she said, "Mav had to have a lot more needle pokes than I ever have, so I have nothing to be afraid of." The lidocaine started to wear off around 5:30pm and we had to make a call to get something a little stronger than ibuprofen. After that, the evening went smoothly. Carter had his last baseball game of the season. Here's a pic of a hit he made.

This morning we woke up early to go blackberry picking at a farm nearby. I thought it would be a fun outing for us since we were going with several friends. We had been there no longer than ten minutes when the whining ensued. I really can't blame them. We went in the morning to escape the heat, but it was in the 90's by 10:00. We picked about two quarts and then the kids took a horse-drawn carriage ride around the farm. Maddie said it was a little rough. It was the horse's first day doing this, so he didn't quite have the hang of it. Here are some pics of the day.

I took these last two pics after a conversation with a couple of men at the farm. I had just canvassed one aisle and was heading a different direction to go down another. One man thought I was just getting started and yelled out, "Ma'am, you might as well not waste your time. There's nothing out there." They continued to walk toward me red-faced from the heat. I held up my bucket when they were close and said, "I've had some pretty good luck. I've been looking underneath the vines." "Oh, well you have. Lookin' where no one else was lookin'" he said. I smiled and turned to start the search again. I kept pondering the incident in my head and was thinking of the lesson I learned from this - take your pick:

1. To find what no one else can find, you have to look where no one else will look.

2. Persistence pays off.

3. Don't listen to what everyone tells you (or should that just be what men tell you?).

4. You must pass over many pieces of sour fruit to find the sweet ones.

or, all of the above. Yes, I believe all of the above. I enjoyed the time with the kids today and we sang some of our favorite songs on the way back home. I reminded myself today how lucky I am to have three healthy kids here with me - with us. I was thankful for the doctors' appointments and all the chaos. The normal, regular chaos. I so miss Mav, but I know I truly appreciate my life more because of him. I think it's an amazing gift to appreciate people when you have them, not just after they're gone.

Carter and Chloe went to their grandma and papaw's house today and spent the night tonight. I was resting on the couch this afternoon and Oprah came on. It was an episode on moms. I couldn't help but think, "Some of these people don't know how petty this stuff is that they are complaining about." Another heart mom lost her five-month old heart baby this week.

Hug your kids and give them an extra ounce of patience. School starts back for us in six weeks. This summer is going by so fast. Love you all, jc

Catching up

2009-06-28T23:26:00.003-05:00

I haven't blogged in several days, so I'm catching up today. I stayed around the house until yesterday. We got out for a little while yesterday evening. I've felt good, my groin area is just a bit sore. Nothing ibuprofen won't fix. I just can't imagine what little Mav must have felt, though. They poked so many times the last time they tried to do the heart cath to create an ASD. And I know that pain was nothing compared to his two open heart surgeries and other procedures and operations. He was truly a tough little guy.

We all went to church today. The sermon was great. It was on James 3:13-16 and was about wisdom. Here's one thing Todd said, "Wisdom is not understanding all that is going on. Wisdom is making good decisions as life is thrown at you." I've been trying to understand the why's of everything that has happened. I still can't make sense of it. I know that I need to just continue on and focus on making good decisions now. Sometimes it's hard though. His sermon gave me some things to ponder and implement.

I can't tell you how palpable the relief is in this house. Things were so tense and uncertain before the procedure. We weren't sure if it would work or if we would be looking at an open heart surgery sometime in the near future. And there are always risks with any procedure. The kids were pretty wound up about it, especially Maddie. Greg was very concerned. It's just been so nice to have this issue behind us, and I've been feeling better emotionally since it's over. Greg has, too.

One thing I'm going to miss are the amazing meals my friends cooked, though. I can't, in good conscious, "milk" this anymore... sigh. My children are going to have higher expectations of me this week. Every night at the table, the kids had nice compliments to say about the food and the person/people who prepared it. My favorite/funny comment was from the Chlo, of course. She said, "Ms. Gaynell is da best cook in da evah." We got a bunch of groceries at the big W. Maybe I can win them back over with my "famous" spaghetti. That's the dish they all like the best of mine. My secret? Prego from a jar - pour into 1 pound cooked hamburger meat. I don't know what happened in my family. The good-cook gene was passed on to my brother instead of me. That is so not fair.

Thanks for all your prayers. Love you all, jc

Wash Me

2009-06-28T22:36:00.005-05:00

Ok, I can't figure out how to rotate this image from my phone, but you can read the writing better this direction anyway. She was playing outside with Carter and Kirk without shoes on and her feet were black. Dianna (Kirk's mom, my friend) gave me the idea to do this to her feet. She giggled the whole time I was "writing" on her feet.

Maddie's tomatoes

2009-06-28T22:36:00.003-05:00

Here's a pic of Maddie with her first ripe tomato - it's kind of hard to see. It's a cherry tomato. She has several different kinds growing and they've all done amazingly well. She also has a watermelon growing. I think she has a green thumb.

Kids playing

2009-06-28T22:35:00.004-05:00

Here are the kids playing yesterday. Kirk dressed up, the girls put on their army shirts, and C-man just stayed in his regular clothes. The girls came into the kitchen with blue sparkly stuff under their eyes before they went outside. I asked Maddie what it was. Want to take a guess? Nailpolish. I let her know that taking it off would be stinky and the fumes might hurt their eyes and noses. Then I dismissed them outside - that was dealt with later. They played for quite a while and had fun. The polish came off without many complaints, but that will probably be the last time they decide to do that. It does look pretty cute, though.

Me with my ice cream

2009-06-28T22:35:00.002-05:00

Ok, the ice cream pics need an explanation. We've been to the big W and I did alot of shopping. The ice cream bars the kids have were free - I had some good coupons. The Starbucks ice cream I have - caramel macchiato - is yummy and was only around 45 cents from a coupon in last Sunday's paper. So, we sat outside this evening and had some ice cream. The "cool front" that came in left the temperature in the low 90's today, and after the 100+ weather the past several day, it felt pretty pleasant outside this evening. I just had to brag a little about my deals :)

A pic of Carter with his ice cream sandwich

2009-06-28T22:34:00.002-05:00

He's had a good weekend. He and his friend Kirk have played pretty much all weekend. They keep themselves entertained and have a great time together.

A pic of Chloe and her favorite baby

2009-06-28T22:33:00.002-05:00

Chloe continues to take care of her baby. She puts clothes on it in the morning and changes it's diaper and puts jammies on it at night. She talks baby talk to it and talks to us about it all the time. Sometimes baby is a girl and sometimes it's a boy. Baby is usually just baby, but sometimes its name changes. Baby has been in the hospital and was very sick, "but she got betta. She not die." She'll bring up the times that baby had the yellow thing in her nose (Mav had a yellow feeding tube in his nose). The other day she said, "My baby was all ova me in da bed last night." I think she's heard that line from me - she still sleeps with us sometimes. Here's a funny story about "baby" from a few weeks ago. We were at Walmart getting some groceries and baby had to go with us. Baby had clothes and a hat on and had to sit in the front of the cart I was pushing. I had some coupons and stuff sitting on baby's lap and baby was laying back and to the side with it's head kind of out of the cart. A woman walked by us on the toothpaste aisle and I saw her out of the corner of my eye. She did a double take and I heard her gasp. I looked up at her and she was looking at baby and then at me. I had to show her that baby wasn't real and explain that she has to go with us everywhere. We both got a good laugh out of it.

Home

2009-06-24T21:38:00.001-05:00

I am home this evening. Thanks to Dejah for updating for me - the procedure was successful. For my medical friends and the heart-informed readers I'll share the details. The defect measured 22mm when they measured it during the procedure. It was too big for the Helex device, but Dr. Sperrazza was able to place a 24mm Amplatzer - it's the one in the video below. It fit nicely and isn't causing any problems. The deficient rim didn't cause a problem. I've been having some PAC's (premature atrial contractions), but they've lessened a lot since yesterday. No one seems to be too concerned about them. I had an echo this morning to confirm that the device looks ok and to get some baseline values for the echos to come. All was well. I'll have a follow-up appointment with Dr. Ward in one month, and I think there will be an echo done at that time. I'm taking Plavix and aspirin for six months. Greg got a kick out of that. I've always kidded him about having to take all his "heart medicine" at his age (blood pressure and cholesterol pills), never thinking I would have any health issues of my own. I couldn't have imagined. They checked out my coronary arteries while they were in there. They looked great - no blockages. I really hadn't been very sore, but was a bit more sore after I got home this afternoon. At this point, it looks worse than it feels. Lets just say I wouldn't be very attractive in a swimsuit right now. I didn't get much sleep last night, hospitals are so noisy. I came home and took a nap this afternoon. This is a pic of the wonderful pillow I had last night - which might also have something to do with my sleeping difficulties. Seriously, can this be considered a pillow? I asked for another one, but was told they were all like like this. Note to self: always take pillow and ear plugs to hospital.

Maddie and Kelsey (my friend Kristi's daughter) went swimming this afternoon with Kristi, and Greg picked up Carter and Chloe from their Aunt Jan and Uncle Bob's house. Our friends Dovie and Polly brought us dinner tonight - thanks, girls! It was great. Thanks to everyone who has helped us out this week.

I can't finish this post without acknowledging little Mav. Last night I was laying in the hospital bed thinking about him and how ironic it was that the same night four months prior I was laying with him in his crib at Children's. It was the night before he died. It has been four months today. Today, I left the hospital with a better chance at a long life without heart complications. The same day of the month he left to be with God. His little body left the hospital in a car seat en route to the funeral home. If he had never come into our lives, I may have found out about this defect too late. We still love and dearly miss our sweet boy. I just hate it that he had to go through so much. I love this picture of him. It was taken right after he was born. One of Greg's favorites is posted below with an explanation.

It was a bit difficult going into Children's yesterday, but my friend, Lori was with me in the cath lab. We also saw Danny, the chaplain I've known for many years. Mav's nurse, Marcy, came to see us once we got into a room. It was as good as it could've been, given the circumstances. Thanks for all your thoughts and prayers. Love you all, jc

Mav leaving the hospital

2009-06-24T21:35:00.002-05:00

2-24-09: Greg carried Mav out of the hospital to the funeral home car wrapped in the silky blanket I always held him in. He felt so honored to be able to do that. He took this picture of him after he placed him in the carseat. He loves this picture and says it's the most peaceful he's seen him. I have a harder time looking at it. It just brings back all the preceeding moments to me. Either way you look at it, though, he is beautiful.

Update on Jules...

2009-06-23T17:34:00.002-05:00

Hello All! I'm Dejah Quinn, Julie's friend and she asked me to update the blog on her behalf. The procedure Juli had today on her heart took!!

Dovie and I turned the corner to the waiting room at the hospital and were greeted by Maddie's ear to ear smile. She was so very happy and ran straight at us yelling and jumping up and down exclaiming "It worked! "It worked!". Needless to say everyone was relived and happy at the same time. I have no fancy medical terms for what actually took place (I'll leave that to the experts)....but I can report that "IT WORKED!). Juli was was recuperating and in great spirits when I left the hospital around 3. They were about to move her to her own hospital room were she will likely be at least until tomorrow.

I know that the family thanks you so much for all your prayers and covets your continued prayers as Jules recoups. I did not get to see Juli and Greg before the operation but I am guessing it was pretty bittersweet to be in the same place they said goodbye to their baby boy Maverick only 4 months ago....especially in light of the circumstances that brought them there. After all, had it not been for precious baby Maverick...Juli might not have learned of her heart issues.

I'll keep you updated as I hear more!

Father's day cupcakes

2009-06-22T17:24:00.002-05:00

Maddie made cupcakes all by herself for Father's Day. It's hard to tell, but they look like little lawnmowers. She did a great job. Any time there's a camera out Chloe has to get in on the action.

Happy Father's Day - procedure coming up

2009-06-22T17:23:00.003-05:00

We took this pic yesterday at Greg's sister's house. This is Greg's dad. We saw my dad in the early afternoon and his later in the afternoon. We went to the cemetery to Mav's grave after we left from seeing Greg's family. Father's Day wasn't easy for any of us - especially Greg. We're thankful to have both our dad's still here and they are wonderful, but there was still a void. There always will be.

My mom and Brown came into Shawnee yesterday evening. They're staying here for a few days due to the procedure. It's tomorrow @ Children's. I'm hoping all will go well. It should start around 10:30 - if the procedure before me is on time. You know how hospital time works. It could be 3:00pm before I go in - we'll see. I'll have someone update the blog when it's finished. If it works, I'll spend the night at Presby tower. If not, I'll be home in the evening. I'm a bit apprehensive about all this. I'm not really worried about anything going wrong, but I'm nervous about going back into Children's. I haven't been back since Mav died. One of my Mediflight friends now works in the cath lab at Children's, so it will be nice to have someone I know well there.

When my dad came over on Sunday he asked about the procedure and how it worked. I started to explain it and Greg said, "Why don't you pull up a video on the computer?" Brilliant idea. Dad said it helped him understand it a lot better. I'm posting a link below for anyone else who's curious how it works. I may not have the exact same device, but the concept is the same.

Well, enough for now. I need to go pack my bag. Say some extra prayers. Love you all, jc

"Pediatric Cardiology: Atrial Septal Defect Closure"

2009-06-22T17:22:00.000-05:00

	help center e-mail options report spam
julesclarko has shared a video with you on YouTube: Pediatric Cardiology: Atrial Septal Defect Closure A detailed account of an intricate pediatric cardiology procedure successfully performed at MassGeneral hospital for Children. Here's the youtube link for the video.
© 2009 YouTube, LLC 901 Cherry Ave, San Bruno, CA 94066

2009-06-18T01:15:00.002-05:00

I finally uploaded the pictures. As you can see, the kids had a great time last weekend. That's about all we did was swim and sit out by the pool. They had movies after dark on a big outdoor screen that we watched as well.

We left Friday afternoon and stopped by Mav's grave on our way out of town. Greg and I had been talking about him the night before - he would've been nine months old on Friday. We took some flowers to his grave and as I was getting ready to place them, Greg brought a blanket out of the truck and spread it over his grave. I had told him the night before that miss him so much I just wanted to lay on his grave, not realizing that he would actually try to arrange that for me. I know it may sound strange, but I just want to be as close to his sweet little body as I can. So, I just lied there with my hand touching the blanket on the ground above where his little chest should have been. I am so blessed to have a husband who listens and tries to help me in the midst of his own grief. After the above scenario and a crying spell, we were on our way to the hotel. I think it did all of us a world of good to get away from the house.

We got back home on Monday and it's been pretty difficult since then. I think with his nine- month-old birthday last week, Father's Day this weekend, and my procedure coming up on the 23rd (which is the day before he died), it's made for an emotional week. I've just had a case of the blahs. I'm trying to focus on all the things I have to be thankful for, but sometimes it's just easier to throw a pity party for myself. I can't help but think about what our other kids were doing at nine months: crawling like crazy, cruising, and Carter had started throwing a ball. I can't help but think about all the things we're missing with Mav. Of course I realize he wouldn't be doing them now even if he was still alive, but I think you get the idea. It's just been hard to smile this week. My old friend insomnia has crept it's way back into the past couple of nights as well. I suppose all of this is to be expected since I'm now a life-long member of the club no one wants to join.

Anyway, my mom and Brown are coming in this weekend. My friend Kristy called today and she and her daughter are coming in next week. It will be nice to have some extra people around to keep my mind occupied. I'm not worried about the procedure, I just hope one of the devices will work. Well, this is probably enough rambling for tonight. Love you all, jc

Fish, fries, green tomato relish and some R &R

2009-06-15T22:11:00.002-05:00

Here's a pic of the Windy's catfish meal.

2009-06-15T22:10:00.002-05:00

We all got out of town this weekend and went to a town in SE Oklahoma called Durant. Greg found a hotel online that is associated with a casino there and it had a wonderful pool. It's only a two hour drive from here and we have friends in Durant, so it was a nice quick trip and we were able to see some friends we haven't seen in awhile.

This pic is of Greg and the kids in front of a place you would never go without a recommendation. Seriously, as you can see, it doesn't look like the best place to eat. My grandparents used to live at Lake Texoma (by Durant) and we would frequent Windy's when we went to visit them. They have great catfish. The ambiance is a bit to be desired, though. We encountered a rather round man with a very loud burp at a table close-by. Maddie said it made her lose her appetite and took her food back to the hotel in a to-go box. It was pretty disgusting. Anyway, the fish was still as good as ever and I love the green tomato relish - I think it's a southern thing.

Most of the time we stayed at the hotel pool and took in some sun. Those pics are on the camera, so I'll post them tomorrow. We really had a good time. I wasn't quite ready to come home.

Not much else new going on. My procedure is still scheduled for next week. We met with Dr. Sperrazza last week and he seemed pretty positive about the procedure. He's going to try the Amplatzer device and the Helex if needed. Hopefully one of them will work. He answered all my questions, and we feel pretty good about it. Dr. Ward will be in on the procedure as well - I'm glad.

I'll write more tomorrow. I'm going to try to get to bed somewhat early tonight. Love you all, jc

Still Here, Just Getting Away

2009-06-14T11:12:00.002-05:00

We decided to get out of town for the weekend. Just didn't want anyone to worry. We're coming back home tomorrow and I'll post some pics then. All of us needed some R&R. Love you all, jc

2009-06-08T23:05:00.002-05:00

I haven't posted a Mav pic in awhile and the little guy has been on my mind a lot today. This is one of my favorites. He loved looking at his mobile. This was one of the toys we hung from his bed. I've come to realize that the pain of our loss doesn't go away. Some days are easier, but I'll see a cute baby boy and ask how old he is only to realize that's how old Mav would be. I saw my sister and sweet baby Addison yesterday - little Addie is now a little over five months. That's how old he was when he died. I know I've said it before, but I just wish things would've been different. I wish he could've enjoyed normal baby things and wouldn't have had to endure so much pain. I'm glad he isn't enduring it now, though.

I was looking around at some blogs last night and came across one for PLE research. I signed up. As far as I know, Mav is the only baby that's been diagnosed with PLE. Most patients develop it after the Fontan. I thought if his problems could help someone learn more about the causes, we should sign up. I haven't received a response from them, yet.

I've also been looking at more grave marker designs. We have to have a flat grave marker where Mav is buried. We would really like to have it in place by his birthday, so we need to make some decisions. It's so hard to decide exactly what we want and I want it to be perfect. I'll keep you all up-to-date as we progress. If you have any good sites to look at, feel free to send me a link. I have three favorites so far. I just want something very unique. Something that will let people know how special he was and how much he is loved and missed. Here are two of the sites. The other one isn't working tonight for some reason. These are not exactly what we want for him, but they are the sites that have some of the most original grave markers. Here are the links:

http://www.westmemorials.com/imgdetail.asp?id=6348

http://monuments.reachlocal.com/coupon/?scid=1087138&cid=350860&tc=09052319203105158&kw=1053663&dynamic_proxy=1&primary_serv=monuments3.reachlocal.net&se_refer=http%253A%252F%252Fwww.google.com%252Fsearch%253Fhl%253Den%2526rlz%253D1T4DKUS_enUS228US229%2526q%253Dartistic%252Bheadstone%252Bdesigns%252Bfor%252Bchildren%2526aq%253Df%2526oq%253D%2526aqi%253D

Today Carter had basketball camp from 8:30-11:30. He went to a friend's house after that. He had baseball pics and a game this evening. He played well. No home runs this time, though.

While he was gone, Maddie and I went to the YMCA to work-out and Chloe went to play with a friend. Then the girls and I and some friends went back to the YMCA to swim.

Some exciting news around here: Maddie's tomato plants are growing big and there are several baby tomatoes starting to grow. She has some cucumbers and peppers growing as well. She's so proud of them. She's been taking care of them all by herself.

More good news: Greg's cousin, Rachel, had a good report on the tumor that was removed from her brain - it is not cancerous! She's recovering well.

Just an FYI - if any of you living in the Shawnee area have old shoes lying around that your kiddos have outgrown, the Hope House needs them. My friend, Dovie, took some things by there today and they said they really need shoes. They have been filled to capacity this summer. For you all not from Shawnee, the Hope House is a temporary place for kids to stay when they're taken into custody due to parental issues. They're there until they're placed into foster care. If you need more info, just let me know.

Well, enough for now. Love you all, jc

What is that?

2009-06-05T23:18:00.006-05:00

An explanation of the above picture:

Our refrigerator was a mess. It needed to be cleaned. It was going to be an all-day job and I needed help. I told the kids we were going on an adventure and we were going to see how many colonies of mold we could find in the refrigerator. Carter was all over it. He donned the gloves and wanted to be the "explorer". This moldy cucumber was his first of many finds. I think what was more troubling than the mold colonies was the McDonald's french fry that was at the back of the bottom of the fridge. It had been there for no-telling how long and it still looked perfect. I took the opportunity to tell the kids about how "real" food gets moldy, but the french fry had so many preservatives that it still looked exactly the same. I don't think I've deterred them from eating french fries, but who knows?

Here's a picture of Maddie showing off the clean fridge "Vanna style." That was our excitement for the day.Monday, Carter had a baseball game and if I can just brag a little, he had two home-runs! Here's the little guy at the game. If you notice, his hair is now short. He wanted to get it cut. He looks very handsome with it short, but I miss the long hair. I think it's just a "mom thing."

Wednesday Maddie went with a friend to a thrift store to find some cool stuff for the theme nights at Falls Creek (church camp). Carter had a friend over and Chloe followed them around. Wednesday night Sonic had free rootbeer floats, so that's where we went. The pic is of the kids enjoying them - Greg and I did, too!

Maddie leaves for camp week after next if she doesn't change her mind. She has been very hesitant about going because my procedure is the week after she gets back. She's scared something will happen to me and she'll wish she would've spent more time with me. I think it's horrible that a twelve-year-old even has thoughts like that. What do we tell her? We've told her that things should go well; however, there are always risks to any procedure. She knows that her great-grandmother coded (went into cardiac arrest) during a "routine" heart cath the month before Maverick was born. They got her back and she's fine now, but with that and Maverick as a reference point, I can see why she's concerned. I've told her I want her to enjoy her summer. If she wants to go, then she should go. If she wants to stay home, that's fine, too.

Back to Wednesday, it was a strange day for me. It was the first day since Mav passed away that I didn't cry. I know it probably sounds weird, but it makes me tear up just thinking about it. As I've become connected with the blog world of other heart moms, I've come to realize that even if he had sailed through the first surgery without any problems that wouldn't have been a guarantee of a long happy life. One sweet heart boy died last week at two years old. He awoke in the night and didn't feel well and passed away at the hospital. Another little heart warrior who was seven lost his battle recently from complications of PLE (protein-losing enteropathy - one of the complications Mav had). With congenital heart defects, you don't have any guarantees. Really, with life in general, you don't have any guarantees. My heart and prayers go out for those families. I know how tremendous their losses are.

We got the results back from Greg's stress test, and everything looks good. That is a big relief. He's in OKC tonight at a sleep lab getting set-up for CPAP. He has sleep apnea that was found at his sleep study on Sunday night. Hopefully he'll feel like a new man when he comes home tomorrow after sleeping with the CPAP. He's been so tired lately, but we're thankful his back hasn't been bothering him much.

Yesterday morning we went to the "Summer Movie" deal in Bricktown - i.e. cheap movies for kids during the summer. Last night we went to the musical, "Oliver" at Shawnee Little Theater. It was great. The kids loved it. We know several of the people in it. Our friend, Amy, and her sons, Logan and Caleb, did a wonderful job. Amy even did a perfect cartwheel. We had to "whoop" for her after it.

After we got home last night, Carter ran into the kitchen yelling, "HEY, SHE JUST BIT MY LIPSTICK!" I just cracked up. Just what a momma wants to hear from her son. He got some new flavored chapstick and Chloe found it. Sure enough, there were bite marks on it, and she still had the evidence in her mouth. Carter was not happy.

Here's a funny Chloe story. She was laying in our bed the other night and I was scratching her legs. She likes to be gently scratched when she's going to sleep. I usually scratch her back or tummy, but I was reading and her legs were easier to reach. She said, "Mom, wook, I have spwinkles." She pointed to her legs. I told her those weren't sprinkles, they were goose bumps. She looked at me and tilted her head to the side and repeated, "Goose Bumps" like she was letting those words really sink in. While this conversation was taking place, her goose bumps went away. When she realized it she said, "Do it again!" I did and then she asked, "What they called?" I thought it was so cute.

I've been thinking about NP school this week and am trying to decide how to do it. They offer a full-time program and a part-time program. They do not recommend the full-time program if you are working at all or if you have any other obligations. I think my family might count as the latter. I don't want to miss out on everything for a little over a year. So, I've sent the school an email asking if someone who has finished the full-time schedule would contact me. I think it might be helpful to ask someone who's been through it what their thoughts are. We will see what kind of response I get. I'm looking forward to school - no matter which way.

Well, enough for now. I'm going to bed. Love you all, jc

Happy Birthday Greg!

2009-05-29T21:42:00.002-05:00

Today my sweet husband turned 39. Greg is a Texas fan, thus the cake. His birthday wasn't the greatest as he's been having some problems with his blood pressure and had a nuclear stress test today. We haven't heard anything about the results, yet. Hopefully all will be well. We need things to get better this year.

Last we heard, our cousin is doing well. Thanks for your thoughts and prayers for her and her family.

As you can see from the pics below, we went to the YMCA today. We have a very nice one here. There is an indoor pool/slide/lazy river/kids area. It's the first time we've been this year. I'm sure we'll be there a lot this summer - it's a good place to be in the water and away from the intense heat that comes with these Oklahoma summers.

I talked to a friend today that I don't see frequently. She asked how we were doing. You know, some days are better - some days aren't. I think it's getting easier to deal with everything, but I still wish everything could have been different. I think I'll be wishing that for the rest of my life.

There's not really much else to write about today and no big plans for the weekend. I've been enjoying sleeping in later this week - I think the kids have enjoyed it, too. Poor little Chloe ended up having strep throat, but as you can see she's feeling fine now. The antibiotics kicked in and she's back to feisty self. Hope you all have a great weekend. Love you all, jc

Carter's Frog "Tim"

2009-05-29T21:30:00.000-05:00

Carter found this frog in our backyard before we left to go to the YMCA. He named him "Tim".

The Frog

2009-05-29T21:29:00.002-05:00

After we came home from the YMCA, we worked in the backyard and Carter found "Tim" again. Here he is doing some tricks with his new friend.

Kids at the YMCA

2009-05-29T16:43:00.002-05:00

I took the kids to the YMCA today. They had a great time playing in the water.

YMCA

2009-05-29T15:39:00.001-05:00

Chloe had a great time at the YMCA today. It was our first trip there this year.

Prayers, please

2009-05-27T17:08:00.003-05:00

We have a sweet cousin - granddaughter of Aunt Pat and Uncle Bob who sat with Maverick - named Rachel who had surgery to remove a tumor from her brain today. They don't know yet if it is malignant or not. Please keep her and her family in your prayers. They had this done in Texas at MD Anderson. Thanks. Love you all - jc

Taking a Breather

2009-05-26T22:04:00.004-05:00

Pic from Carter's award ceremony last week. Mrs. Brand is his teacher. We love her. Maddie had her, too.

Here is Maddie after her award ceremony. Hers was on Friday - we checked out a little early.

I just haven't felt like blogging for the past several days. The kids had their last day of school on Friday. We were all so glad to leave for the last time this school year. We went to get a snow cone after school and when I pulled money from my pocket, I realized something was wrong. I had two fives that I received as change earlier in the day. They didn't look alike at all. One looked counterfeit. I paid for the snow cones with the real one and then we walked to the credit union next to the snow cone stand to investigate further. Sure enough, the bill was counterfeit. I asked the bank teller what I was supposed to do with it - she said I should take it to the police station. The police man who took the report said there had been a bust of some people who had been making fake fives and twenties, but there were probably still some floating around. I was lucky enough to get one of them and realize it. The kids now know where the police station is and what happens to counterfeit money (they send it to the Secret Service). We'll call it the first educational field trip of the summer.

Saturday, Greg and I celebrated our 15 year anniversary. We went out to dinner at Paul's Place - it's our favorite steak place in town. When we finished, we both wanted to go to the cemetery. The kids stayed with their Aunt Jan and Uncle Bob. We went to Walmart after leaving the cemetery to get some flowers to take to his grave. I've decided I'm going to have to get over my dislike for artificial flowers. We walked in and went to the Memorial Day aisle - you know the one. I've never had to walk it before. We started down it and I just started crying. Greg took me away from it and said I wouldn't have to go down it again. We bought real flowers and Greg picked out an artificial arrangement so I could use the vase that sticks in the ground. I figure the real flowers will last a little longer if they're in water. I'm planning on going to Hobby Lobby soon to find some realistic-looking flowers to make an arrangement. After that, we came back home and had a pretty somber evening. Maddie took this pic of us before we left for the evening.

Sunday was three months since his death. I tried to stay busy most of the day. Maddie and I went that evening to a dance recital. She and Chloe both started out in dance this school year, but they both stopped before Christmas due everything that was going on. Maddie is ready to start back up next year. She loves to dance. I'm not sure about Chloe. She may or may not.

Here's a pic from one of Carter's recent ball games. He's having a great time.

Monday the kids and I went to the cemetery. Maddie said, "It doesn't even look depressing out here." There were so many flowers. Yes, probably 95% of them were artificial, but they did brighten the place up. We saw a family that had a baby a few plots down from Mav and the mom was making a flower arrangement right there in the vase. There were three other kids there and the mom was actually their great-aunt who had adopted them all. We talked a bit and the baby that died was a twin to one she had there that day. The little girl looked to be about five and the lady was still tearful when she talked about it. Of course I cried when I told her about Mav. I think it just goes to show it doesn't get easier. You just deal with it differently. When we got home, Greg pitched a tent in the backyard and the kids played until late. I cooked out hamburgers and hot dogs on the grill and started cleaning up when we finished. Greg has been talking to me about painting. He knows how much I love it and has been encouraging me to pick it back up. I think he knew I was having a hard time when he saw me flitting about trying to find things to do. He said, "Do you have a canvas?" I said, "Yes." He said, "Go paint for awhile." I got out my paint box, palate, turpenoid and canvas. I looked for my Nora Jones CD, but wasn't able to find it so I borrowed Maddie's ipod and put "Sunrise" by Nora on repeat. That CD is one of my favorites and is the music I used to paint to a lot. Usually I have a sketch or picture or something when I start, but I had nothing. I just started painting how I felt. I cried a while and then was so completely relaxed. Painting has always been almost intoxicating to me. I can completely lose track of time. I was finished with my painting in an hour and a half. I felt much better when I finished. Maddie took this picture of me finishing up.

We went to bed a little late last night, and little Chloe woke up a lot. She was running a fever this morning. Doesn't she know she can't be sick on the first official day of summer break? We just stayed around here. She perked up for a while, but was puny again at bedtime. Carter practiced his Michael Jordan moves outside with his basketball today. Maddie, Chloe and I (when Chloe perked up) made banana bread and went outside in the backyard to tend to Maddie's container garden. We have a few things to finish up then I'll post some pics of it. All her plants are growing really well and she enjoys taking care of them. Oh, and we all read this morning. That's my goal for the summer - to have reading time everyday. So far, so good. Love you all, jc

P.S. I added some more things to the list below - and changed the font on some. They didn't show up in the right-sized font for some reason.

Ideas to help those who have lost a child

2009-05-21T23:46:00.001-05:00

Another heart mom from Texas asked me what the most thoughtful thing someone has done for us after Mav died. I thought that question deserved a good answer. We had so many thoughtful things, though, I'll have to make a list. I'm sure over time I'll think of others and have to come back and update it. I think this might help others have tangible ways to help those who have lost a child.

The day that Mav died, two friends sent beautiful flowers to the house.

Of course the wonderful food started pouring in; Greg and I couldn't eat, but my kids and family still needed to.

Our neighbors brought lots of paper products - paper plates, towels, toilet paper, napkins; as well as trash bags and plastic ware . I thought that was a great idea. I didn't feel like doing dishes and I certainly didn't want to go to the store to buy those things. We had lots of friends and family in and out and it was nice to have everything available.

Our sweet school secretary sent teddy bears to the kids.

Our school sent ice - the good kind of crushed ice - over in an ice chest.

There is a family-owned gas station here in town, and anytime we go they give the kids bubble gum. Their family brought over a huge tub of bubble gum and candy for the kids. If you're a mom, you know that anyone who does something sweet for your kids gets high marks.

I had two dear friends fly in from out-of-state. They were both at my disposal. They listened, cried with me, drove me around, watched the kids, helped me pick out a dress, etc., etc. Their presence meant the world to me. Another drove several hours to be with me right after Mav's death.

We received so many cards. The sentiments were so thoughtful. I loved getting letters that told me how Mav impacted their life. We received cards from people we've never met. One sweet person wrote a nice note and included stickers for the kids. An aunt sent us stamps. Some sent money, restaurant gift cards, and we even received a grocery store gift card. Everything was appreciated. Honestly, through all of this we never knew how we would financially make it. We didn't. It was God, working through all these amazing people that helped us make it through.

My girl friends arranged lunch for us the day of the funeral. Our church sent food for the evening.

A friend from church made the funeral handouts for me. I couldn't stand to see those depressing ones they usually have.

My gifted photographer friend and her husband came to my house and backed up all my photos - I was so afraid our computer would crash and we would lose them. They also did the slide show and took pics at the funeral and graveside service. I still need to post the one of the helicopters in formation over the graveside service. It is truly amazing.

The staff at the hospital made hand and foot prints in clay. Those are so precious to me.

Friends from work did so much for us. They donated PTO to me. That helped cover our insurance costs while I wasn't working. They bought Christmas gifts for the kiddos. I know these are before he died, but they were so appreciated. I'll probably make another list of How to Help Those with Children in the Hospital. They came to see us immediately after Mav's death and helped us pack up all of his belongings.

The funeral home director was a good friend. He brought their family's moses basket to the funeral home for us to use. I couldn't bear the thought of seeing him in that little casket.

I had another friend who showed up on my doorstep the Sunday after the funeral. Everyone had left. I was lonely. Her timing was perfect. If she would have called I may have discouraged her from coming. I'm glad she came unannounced. For me, having company and people to be around has been very helpful.

Greg has a friend that lives an hour away - he had bar-b-que delivered to our house.

A few weeks after Mav died, we had a friend bring sundae stuff and ice cream over. The kids loved it.

An aunt gave us a framed picture of Mav's hand that she had taken. I love it.

I loved the potted hydrangea we received from one of Mav's nurses. The card was so touching. It said that the blue flowers reminded her of Mav's big blue eyes.

The friends and acquaintances that shared their stories of loss and listened to us - and continue to - are priceless.

Going out to the cemetery and seeing fresh flowers left on his grave was so touching.

One friend brought over several canvases. She knows I love to paint.

One sneaky friend paid for a couple of my hair appointments.

One family sent money for the purchase of Gideon Bibles in Mav's memory.

Some brought over books on loss - for us and the kids.

We had one friend who knew she couldn't go to the funeral because she has lost babies herself. She volunteered to substitute in Carter's class so his teacher could go.

I think any personalized gift would be appreciated by someone who has lost a child - like a necklace or Christmas ornament with the child's photo. Gifts of some one's time or money to a cause that would benefit other children in similar circumstances are wonderful.

I recently received an email that a home school coop had a moment of remembrance for Mav. That was very touching.

Our church organized a blood drive in Mav's memory. Seventy-two amazing people showed up to donate and sixty-two of those were eligible to donate that day. Isn't that amazing? The people who worked the drive said they usually only have about 20 or so show up at a church sponsored blood drive.

I know I'm missing so many. I'll add to this as I think of more. I may try to put a link to this on the side or at the top at some point. It's getting late now and I need to get some sleep. Love you all, jc

2009-05-20T22:52:00.002-05:00

Yesterday, Carter had his award ceremony at school. Maddie and Chloe sat in to watch - I think Maddie just wanted to get out of class! We're so proud of Carter (and the girls, of course). He's been through so much this school year and has really done well, all things considering. I planned on leaving the kids at school after the ceremony - it was held at 11:45 and finished at 12:15. I caved to peer pressure, though. Many of the kids were being checked out, so I checked mine out as well. They both went to friends houses to play and swim. They had a good time.

After the ceremony we were standing in the area with the kids and teachers talking and taking pictures. I saw one little boy walk up to one of Carter's friend's mother and tell her that his parents weren't able to come that day. She looked at him and said,"Aww, what a bummer. Would you like me to take a picture of you?' I didn't hear his response and was involved in another conversation at the time, but I did see him smile really big. I thought, "Wow, what an amazing person. She just made his day." I wondered if I would have even thought to make that offer. It made me think about what's important to my kids. My presence - mentally and physically. It also made me think that small things can truly make a difference in someone else's life. I know that's a bit deep for the second paragraph, but that scenario made me think.

I took Maddie's swimsuit to her at our friend's house. After we left, Chloe and I were alone in the vehicle. I asked her where she wanted to eat. She said, "McDonald's!" I asked her, "Are you sure? Is there anywhere else you'd rather go?" She said, "No." I replied, "Not even Benedict Street?" She squealed, "YES! BEN STWEET!" What a smart girl. Coffee and a cookie are certainly better than a play place any day.

Later in the day I passed two different funeral processions. They really hit me and made my heart hurt. All I could think of was the pain someone else was going through. That really sucks.

When we made it home, I took mail from the mailbox and went to the den where Greg was sitting. I received a big envelope from the University of Southern Alabama. I told Greg who it was from and opened it. It was an acceptance letter to their Pediatric Nurse Practitioner Program. We both teared up. I'm glad I got in, but I know why I'm able to go. In January I was planning on being Mav's personal nurse in the fall. Now I'll be going back to school. It's a bittersweet opportunity, but I'm looking forward to it.

I awoke this morning thinking about PNP school and Mav. I went to a friend's house to help her paint her kitchen one of my favorite colors, red (my other favorites are pink and black). There were three of us and we had some good "girl-time." I took a phone call and for some reason while I was on hold I remembered a dream I had last night. It was disturbing. I've heard it's common to have nightmares after the death of a child, but I hadn't had any bad dreams at all. The dreams I've had about Mav were all good. I haven't evn had any about him since the first week after his death - until last night. It wasn't directly about Maverick, but stop here and skip to the next paragraph if you don't want to hear about it. This is your last chance... I dreamed Greg and I were going to a place to pick out his headstone and we followed a man into a room filled with bassinets all decked out with beautiful bedding. There were rows and rows of them and they were all filled with what appeared to be dead babies. I was bawling in my dream. I went up to look in one and the baby was actually made out of some kind of ceramic. They were all a type of grave marker at this indoor cemetery. Pretty strange. I wonder how my mind fashioned that one.

Oh, if you're wondering, the kitchen looks marvelous.

When we got home today I had a sweet letter in the mail that proves to me God's timing is perfect - even when we don't understand the circumstances surrounding it. Wishing our special friend all the best.

I'll post some pics tomorrow. I need to download my camera. Love you all, jc

I have a date - not the fun kind...

2009-05-18T21:48:00.002-05:00

I have a date - not the fun kind - it's June 23rd. That's the day I'll have my heart cath. They're going to try to fix my ASD with a Helex Septal Occluder. For my medical friends, the website is www.goremedical.com/helex if you're curious. My defect is on the upper end of the size range for this device - it's 18 - 20mm. In the reading it says the largest size defect should be 18mm, but in the study the largest defect corrected was 24mm. From what I've read, the rim can be deficient in about 25% of the space and it will still work. I haven't heard a percentage of how deficient mine is, I know the anterior aspect is deficient, and I think one side may be as well. I'm going in on June 10th to meet with Dr. Sperraza who will be placing this. I have some questions for him. It will be done at Children's in the cath lab. If they place it, I'll stay overnight at Presby. If they don't, I should go home the same day. All the reading I've done on these say they're really safe. I really hope this works.

Not alot of other news going on. Today was the last Monday of school for Maddie and Carter! I'm ready for them to be out for the summer. Love you all, jc

The Weekend

2009-05-17T21:49:00.002-05:00

We were pretty busy this weekend. Friday after school we took the kids to OKC and went to a park. We took the long way home and stopped by Greg's older brother's grave in Harrah. He and a friend drowned while fishing at Lake Texoma when Greg was a junior in high school. Greg's mom is from Harrah, so we drove by the house she grew up in. Quite the history lesson for the kids. On the way home we went by and looked at granite for Mav's grave. It's kind of hard to decide. We'll be looking at it for the rest of our lives and we want it to be perfect.

Saturday was a fun day for Carter. One of his friends invited him to a private football clinic held by Adrian Peterson - his friend's parents bought it at a fundraiser. For those of you who don't keep up with sports, he used to play football for OU. Now he plays for the Minnesota Vikings and is an amazing running back from what I hear. I'm not much of a sports fan, but I had heard of him. There are a few pictures of the clinic below. He had a great time. They went through some drills and scrimmaged, then he signed autographs and answered questions. He was a really nice guy and was very good with the kids. We so appreciate the invite. I'm sure that will be something Carter will always remember. Later that night Carter asked me what football players eat because he wants to be a football player. He is my picky eater. The only vegetable he eats is raw carrots, and french fries - if they count. I thought, "Hmm, this is my chance." "They eat eggs, meat, lots of vegetables and fruit." We talked about it for a while. Then he said, "Mom, I thought about it, and I'm the only one in our family who doesn't eat salad. I want some salad when we get home." WHOO-HOO - thank you Adrian Peterson! Carter ate salad when we got home. Greg was wondering what was going on when he asked for it.

Saturday afternoon I went grocery shopping and when I came home to put stuff in the freezer I didn't have enough room. I decided to get rid of some milk - I haven't cleaned out all of it, yet. I had given some of it away, but there was still a ton of it in the freezer. I really can't explain why I haven't gotten rid of it sooner; well, yes I can. I guess I have an emotional attachment to it. All the bottles had his name and the date and time on them. I pumped through January - he was never even able to make a dent in it. It was hard for me to quit, though. I felt like if I stopped, I was giving up on him. It was a bit more difficult to continue after we came back to Oklahoma. When I wasn't with Mav, I was with the other kids and it took up some of that precious time. So, if you are one of my freezer hook-ups keeping that milk in your deep freeze, you may dispose of it. Thanks for keeping it for me.

Today we all went to church. It was Senior Sunday - as in high school senior - a couple of the young men did the music and it was amazing. Later in the service the pastor interviewed some of the youth who had gone through a thirty-week discipleship class. What focused young people they were. I hope our children are as dedicated as they are. Seeing how mature these young people are in their faith helped me refocus.

This evening was Family Fun Night at our church. The kids had so much fun. The pictures are from this event. I saw a lot of friends I hadn't seen in a while. It was nice to visit with everyone. The question about nurse practitioner school came up a few times. One of my friends that applied with me called them last week and they said we will know the end of May or first week of June. I don't even think I ever put the name of the school on here. It is the University of Southern Alabama. The program is online except for 3-5 days per year that have to be spent on campus. You arrange your clinicals in your area. It won't be long before I have an answer.

We went to Mav's grave this evening and someone had placed a flower or Fourth of July spray at all the babies' graves. I thought that was very nice.

Once again, I've rambled long enough. Love you all, jc

Carter and some bunnies

2009-05-17T21:46:00.001-05:00

Face Painting for the Girls

2009-05-17T21:45:00.001-05:00

Another shot from the football fun

2009-05-16T21:44:00.002-05:00

Carter is the one in the #23 white jersey.

Adrian Peterson football fun

2009-05-16T21:43:00.001-05:00

What would I do without them?

2009-05-14T22:09:00.002-05:00

Seriously, what would I do without our kids? They keep me going and make me laugh everyday.

The morning started out a bit on the wrong side. I woke up at 7:35. That's the time we usually leave the house to go to school. I had the kids hurry up and get dressed - I stayed in my pjs and put on some flip-flops and didn't even brush my teeth or comb my hair. I told them I would stop by the donut place and get them a donut on the way to school. Maddie went in and I promise you it took 15 minutes to get donuts today. The line was almost out the door. With donuts in hand we drove to the school. I'm getting ready to turn into the parking lot and Maddie comments on how many cars are there today. "Oh, no. Someone has their awards ceremony today," I say. Maddie urges me to stay parked until she finds out if it is one of theirs - so that I can come in and watch if it is... "Maddie, honey, I still have on my pajamas. I can't come in looking like this. Hopefully it's not one of yours." She finally agreed that I was a bit under dressed, so she and Carter went into school and I drove off. It wasn't for either of their classes, thankfully.

I made it back home and got ready. The exterminator came at 9:30 - we've had ants really bad this year. When he left it was about time to leave to go to OKC. Chloe and I went and had a nice lunch with some of my Mediflight friends. We made it back in town in time to pick up the kids from school. Carter went to a friend's house for awhile and had had baseball practice later this evening. Coming home from baseball practice, Carter's commenting about the mosquitoes and how the bug spray wipes didn't work for him. He and Maddie were talking about how they work and decided that the bugs are supposed to leave you alone because they don't like the smell. Carter says, "Well, that mosquito must have held his breath, because he stung me anyway." I had to laugh. Then he was talking about the practice which was actually a scrimmage. He played catcher at one point in the game. He said, "Mom, it was hard being the empire." I told him he was the catcher and he continued to disagree. Then I had to tell him it was really "umpire," but he was still the catcher. It was an amusing ride home.

When we got home, the kids had some ice cream and took showers. I gave Chloe a quick bath. She loves her towel that's in the pic above - that pic is one of my favorites from last summer. We got it when she was a baby from one of my friends and she always has to have it. When she gets out of the tub, I wrap her up in it and she always says, "Hold me like a baby." Always, except for the past two nights... I think she's getting big and outgrowing it. I wrote about times like this in one of my other posts - how you always remember the firsts, but not the lasts. I think we're about to the last of those words. How sad. We went into her room and she was looking at herself in the mirror with the flower on her head. She said, "I'm growing." I said, "Yes, you are."

Well, I've babbled long enough. I need to go spend some time with Greg. He cleaned the carpet in the living room this evening - yeah! Hope you all have a good night. Love you all - jc

Sweet Maverick

2009-05-13T22:24:00.002-05:00

What a sweet boy. This was sometime after his first surgery.

Chloe in Mav's Carseat

2009-05-13T22:22:00.002-05:00

I haven't posted in a few days because I just didn't know what to post. The past few days haven't been the greatest for us with Mother's Day on Sunday, then yesterday Mav would've been eight months old. I think about all the things that should've been going on if things would've gone as expected. He would be cruising, crawling, babbling. If he was anything like Carter, he would've been trying to throw a ball. The days seem to be getting a little easier, but I still miss him so much. The evenings and nights are still more difficult. The house is quiet and there's not much going on at night, so I have lots of time to think. I am glad that he is not hurting and that he's in the most perfect place of all right now, but that still doesn't stop my tears.

I took the above picture of Chloe on Monday. She loves her babies and loves to play with the car seat we had for Mav. She's been mentioning him a bit more lately. Yesterday she came up to me about to cry and said, "I weally miss Maverick." She was carrying one of her babies at the time. I said, "I know, I do, too. What made you think about him?" She said, "I want to feed him and change he diaper." Monday she mentioned him and asked where he lived and why he didn't get to come home. I said that he was sick and he had to stay at the hospital and then he died. She asked, "Who killed him?" Wow. I told her, "Honey, he was just really sick."

Today some of the girls and I went to lunch. Ms. Marla is moving away soon and we all wanted to see her before she left. She is the life of the party and keeps us all laughing. You will be missed by many, Marla.

Tomorrow I'm going to OKC to see some of my Mediflight people. One of the girls I used to work with is moving out of state, so we're telling her "goodbye." It will be good to see everyone.

Well, I guess I'll go for now. The littlest one just crawled up on my lap. She took a late nap today, so we may be awake for awhile. She's talking away... Love you all, jc

Maddie's card

2009-05-10T21:29:00.001-05:00

Happy Mother's Day

2009-05-10T20:20:00.003-05:00

We had a pretty good day today. I awoke to find the sign posted. Greg and the kids got me a pretty white turquoise necklace, bracelet, and earrings. Carter gave me a present from school earlier this week - a cute flower pot with dirt and worms in it (the edible kind). Chloe gave me a flower that she potted at Mother's Day Out. Maddie saved hers until today. She made a cute scrapbook style card with our picture on it. We went to lunch at Santa Fe Steakhouse here in Shawnee. After that, we went to the Mav's grave. I'm so thankful those videos showed up yesterday. At least if I don't have him here, I have some more memories to look back at. One thing I've learned is you can't take too many pictures or videos. You never know when they may be all you have left...

We didn't go to church this morning. We did our back-up plan and watched Lifechurch.tv yesterday evening. They just started a series on Elijah. There was a quote on the sermon notes, and I know I'm not going to get this exactly right and I can't pull it up right now, but it was something like, "God will break you before he will use you." I don't remember who it was from either, I'll check later this week when it's available. Anyway, it was a very good sermon. I think Greg and I are about as broken as you can get right now. Hopefully, brighter days are ahead.

I want to thank my mom, my stepmom, and my grandmas today. I have some strong and amazing women in my life who have helped me make it this far. I think this Mother's Day, I appreciate being a mom a bit more. I'm a bit less uptight when the kids make mistakes - like the fingernail polish on the carpet. I'm a bit more patient when they're being pokey. I try to enjoy every moment. I appreciate my kids more. I appreciate Greg more. I owe it all to Mav. Thanks sweet boy, momma loves you. Hope you all had a Happy Mother's Day. Love you all, jc

Mav's Grave

2009-05-10T20:19:00.000-05:00

The Sign

2009-05-10T20:18:00.002-05:00

Pic of Maddie

2009-05-10T00:13:00.002-05:00

Maddie, Chloe, and I went to Benedict Street the other day for lunch. Look at that cookie, yum. We had a good day.

Busy Days

2009-05-09T17:51:00.007-05:00

We've been busy the past few days. Thursday I went to OKC with two of my friends. That afternoon I talked with Dr. Ward (peds cardiologist in OKC). He took a look at my TEE (heart echo) that was done while I was pregnant with Mav and said there is a new device that they may be able to fix the ASD with. He said the chance was better than 50/50 - probably like 60-70%. Now, you know I'm not a believer in statistics, but if there is the slightest hope of fixing this ASD without having an open-heart surgery, I'm all for it. This device would be placed in the cath lab at Children's in OKC. The same place Mav had his done. Dr. W's scheduler is supposed to be calling me to set something up for late June or July. If it doesn't work, at least I've tried the less-invasive route.

Friday Maddie stayed home with me and Chloe. The Little Olympics was that day, and there were only going to be a few people from her class at school. I had heard they weren't going to be doing much, so why make her go? Carter still had class, so he went. He's had plenty of days off this year when Maddie went, so all is well. Friday evening Carter went to a friend's house to play and Maddie was babysitting. I was cleaning up the kitchen and Chloe was very quiet. I was starting to wonder where she was and then I heard it, "Mom, wook, I paint my fingew nails." Those dreaded words, never meant to be heard from a three-year-olds mouth. I said, "Chloe, did you make a mess?" She said, "I jus got some on da table." We went into the living room to look and she said, "Woops, I got some on da cawpet." Nice turquoise nail polish. I told her to leave it alone and not to touch it. Unfortunately, I've been through this before and know the best thing to do is let it dry and cut it out. Our carpet is pretty long, and usually the polish just sits on the very top. I said something about cutting it out of the carpet, and she became very interested and wanted to get the scissors. I told her only mommy could cut the carpet. We had a discussion about nail polish as well. I was starting to clean her up and I thought I should take a picture. Upsetting, but priceless.

We're just here with Chloe again this evening. Maddie is at a friend's house and Carter went with his friend to The Lion King. It's on stage in OKC.

So far we have no big plans for tomorrow. I'm digging my heels in the ground to try to stop it from coming. Mother's Day is just a reminder that I'm missing one of my babies. Church here is out of the question due to the baby dedications. I'm happy for all of them, but I can't sit through it right now. We may go to OKC tomorrow or something. We'll see how we feel tomorrow.

As I was sitting here trying to upload a photo from the computer, I just got one of the best Mother's Day presents ever. I was able to pull up the videos we thought we had lost - from before Mav's birth to the first of November. I haven't been able to pull them up from the camera or from the computer before - it just showed a sign like the video had been broken. I had called a recovery company and it was going to cost between $400 and $1200 to get the videos back - if they could get them back. I called Greg in here and we watched the video from when Mav was born for the first time. Enjoy your babies tomorrow. Love you all, jc

A cute one of the kids eating worms and dirt we made the other night.

Honestly

2009-05-06T23:36:00.000-05:00

This is another pic Holly sent me.

I've had better days and so has Greg. We talked tonight and he said I just need to be honest. He told me I'll share 8 of 10 things, but the two I leave out are the ones that are the most important. Mav's life, this blog, and our experience won't help anyone else going through a similar situation if I try and paint a rosy picture everyday. In fact, when I've looked at some other blogs where people have lost babies or children and they sound happy and normal and talk about how great the world is it makes me mad. Maybe mad is not the best term, but I think, "Are you real?" I'm not talking about throwing a pity-party for myself everyday, and I'm not looking for sympathy. I'm just using this to express my feelings. Maybe someone going through the same thing may realize they're not crazy. Most people want you to get over it and move on with your life, but most people haven't been through something like this. It makes them uncomfortable.

So, today I was so tired from not being able to go to sleep until late that I came home from taking the kids to school and crawled back into bed. Chloe and I slept until about 10:30. Greg didn't sleep at all last night, so he tried to go to work this morning and ended up back at home as well. After we got up, I went through some mail and wrote out a few bills. I had some phone calls to make - still trying to get the correct insurance information for some of Mav's hospital bills. I'm hoping this took care of it. If I'm being honest here, I didn't even take a shower today.

This afternoon I received a phone call today from my Aunt Jeanne. She is a Methodist minister in New Jersey. She always has good advice for me. She said that I have been on her heart a lot lately. She asked how I was doing. I told her it's just day-by-day. She asked me if I felt like praising God or listening to praise music and singing. I answered, "No." I told her I wasn't even able to listen to music in my car until about a month ago. We talked for awhile and she told me I should do it anyway. I'll try. She asked me about praying and I told her I can say prayers with the kids, but the only thing I can usually pray right now is "Lord, help me." She, too, told me to be honest and to write down how I'm getting through this. She, like many others, encouraged me to write a book. She said, "You connect with people through your pain." She advised me to give in my area of need and said that would help with healing. She said, "You get into positions with your talents, but it's your character that keeps you there" then went on to tell me how much character we have built going through this with Maverick. We talked for quite awhile and we both cried. She told me someday I would understand why - that God would reveal it. She's really an amazing woman.

I can honestly say before Mav came along, I never understood the love of mothers of sick or handicapped or mentally challenged children. I knew they loved their children, but usually thought of how difficult their lives were. How did they keep going, how did they not lose it? Now I understand. It's almost as if it's easier to love these children. I don't really know how to explain it. I never even saw Mav as a "special needs" baby. He was simply our baby and I would do whatever it took to get him home with us.

Mother's Day is coming up this weekend. I'm really not even looking forward to it. At church, we're having baby dedications. Hmmm... I'm very happy for all you that have happy, healthy babies; but I know if I'm there I'll just be thinking about how we should've been up there with Mav, and I'm sure I would start bawling.

Back to today... I called the Ronald McDonald family area at Children's Hospital this afternoon to find out about the rooms. All the ones they currently have are taken, but they are talking about adding more rooms. She took my name and number and said she would call when they get to that point. The family or organization pays for the entire build-out of the room, which is usually around $10,000. I think we could raise the rest somehow. I'm still processing all that. I told the kids we would go up there one day this summer and take a tour.

I was so glad the rain finally stopped this afternoon. Carter was able to go to tennis camp. Maddie decided to join in at the last minute. They both enjoyed it.

This evening we witnessed a baby bird take its first flight. We have a hanging basket with a fern in it by the back door. We've watched as the nest was built, filled with eggs, then filled with tiny furry creatures, and now there are little birds taking off from it. The kids always like to check on them as we're coming or going. It's been pretty neat to watch.

Well, it's late, once again. I suppose I should try to get to bed. Love you all, jc

Lunch with the Girls

2009-05-05T20:10:00.004-05:00

Here some of us are at lunch today. It seems every week some can make it and others can't, but we always have a good time. Have I mentioned lately what great friends I have? Seriously, I'm a lucky girl. My friends help me laugh.

Yesterday evening I had a friend bring by a big tub of clothes for Chloe for this summer. It was like Christmas! Friends, these are nice clothes. This friend of mine is always dressed to kill, and her daughters are too. I'll be posting some pics of her in these I'm sure. Thank you so much, G - she loves them.

This morning I had a chiropractor appointment and I've been released - well, I'm just supposed to go back in a month for a check. My neck and shoulders feel so much better and I'm not having many headaches either. After that, Greg left for work and I took Chloe to Mother's Day Out. I went by the post office and then went to lunch with the girls. We can sit and talk for hours. We keep each other laughing and it gets my mind on other things - at least for awhile.

The kids helped me make dinner tonight. We had breakfast, kind of. I sent Maddie into the store to get biscuits and she came out with crescent rolls, "They were on sale mom!" I guess I asked for that one with all my recent bargain shopping. So, the menu consisted of eggs, bacon, and crescent rolls. No one complained. Greg even told Maddie he likes them better, anyway. After dinner we made worms and dirt - where you make chocolate pudding and cover it with crumbled Oreos and add a few gummy worms for effect. They had fun and it kept us all busy.

No big plans for tomorrow. Chloe and I will probably try to get caught up on some things around the house. My closet is awful, but I don't know if I have the energy to tackle that project. I'm hoping the rain will stop and we'll be able to plant Maddie's veggies tomorrow. Her grandma and grandpa heard she was wanting a garden, so they brought us some very large tubs to plant them in. Carter was supposed to have tennis camp this week, but so far it's been rained out. Maybe we'll see the sun tomorrow. Love you all, jc

Baby Mav

2009-05-04T23:26:00.001-05:00

He didn't know where to look..... Me or the mobile!!! These from today were all sent from Holly. This makes me want to say a big "Thank You" to all of you who sat with Maverick. He was so blessed to have so many people who loved him. He loved to have the attention, and to have someone there to wind that mobile! We are so blessed to have all of you in our lives.

So alert

2009-05-04T23:20:00.000-05:00