"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.