Happy Birthday Mav

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

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..."

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

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

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

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

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...

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

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...

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.

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

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

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

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.

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

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

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

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

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

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.