Normal

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

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

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

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

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

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

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