Thursday, January 19, 2012

The Real Importance of Team Colin - It's My Heart CHD Heart Walk

Date: Saturday Feb. 18
Location: Downtown Houston - Sam Houston Park
Time: 9:00am
Activities: 5K walk and family fun festival afterwards (live music, face painting, raffles, bounce castles, rock walls, gyro rides, and food vendors)
Cost: Free to walk, any donations welcomed

Team Colin is participating for the 3rd time in the It's My Heart CHD (Congenital Heart Defect) Walk. This walk means so much to us and the group it supports. I hope all that can come and walk with us (WE WANT TO HAVE LOTS OF WALKERS) and help spread awareness and raise money for congenital heart defects. I could go on and tell you all the facts about CHD's like they are the # 1 birth defect and # 1 cause of birth defect related deaths. 1 in 100 babies are born with a heart defect.

BUT I am going to share more of the personal side of why Team Colin is so important. I am going to open up more about CHD's today than I probably ever have. Colin's heart will never be fixed, he will always have half a heart. After his next surgery he might be fine and live a long healthy life (and that's what we pray for everyday). He might need additional surgeries, he might need a heart transplant (then you have to worry about rejection) or sadly enough, one day his heart might just give up on him. It's hard to type those words as hard as it is to read them. I know one day Colin might not be here with us… that thought crosses my mind but I pray for hope and strength. I have a good friend I was telling that Colin qualifies for Make A Wish, she was surprised that he qualified as she thought it was for kids who are dying, it was then it made me realized that a lot of people don't know how serious Colin's condition is because he looks and act so healthy but in reality he has a life threatening condition, that can claim his life. Colin has at least one more surgery, and I am scared to death.. I start to tear up just thinking about it. I look at his sweet face and realize that they will have to stop his heart once again and perform another miracle.

The heart walk gives us hope in getting to meet kids just like Colin, some the same age, some older. It's a great network of families and support. Anybody with a child with special needs or a life threaten illness needs that support. In the beginning when I was so lost and confused, It's My Heart connected me with families with HLHS children. I can go to these families with questions and fears. As a parent with a child with half a heart, I have shed many tears, many sleepless nights, I have even started to grind my teeth in my sleep due to stress and have to wear a mouth guard. I have started getting more white hairs at the young age of 32. I am glad I have an amazing network of families to live this with.

The heart walk raises awareness and money to help support outreach programs. Colin was not diagnosed until he was 3 days old. When we were transferred to Texas Children's, It's My heart, gave us a goodie bag with supplies for our long stay in the hospital and information on how to get the support systems in place that we will need to take this journey. Team Colin's donations help with the hospital supply bags and awareness literature. Support systems are key, it is a very long and hard journey to take. Even almost three years into it, I have my moments when I breakdown. The other night I was very discouraged about Colin's growth, he has grown what he was suppose to this past year, but he is still far behind. I stayed up thinking too much that night about him getting teased or bullied because of his size and his self confidence being a smaller person.

80% of kids with HLHS survive and make it to the 2nd surgery at about 6 months of age. That number sounds good until you realize there are 20% that don't make it. I have known too many moms that lost their sweet angles to this defect. I think of their children often as I know it could have just as easily been Colin. My heart has been broken watching these babies fall victim to HLHS and become the statistic of the number # 1 cause of birth related defects. The money Team Colin raises also helps provide grief support to families in a very hard time!

I am going to steal the line from the St. Jude's.. But it fits and I love it.. Give thanks for the healthy kids in your life and give to those who are not. Come walk with Team Colin and support fighting against Congenital heart defects and help raise awareness. Help support It's My Heart that supports so many families that are fighting for their child's life. Every child deserves a long healthy life.

1 comment:

sunshine said...

Thank you for sharing these words, Jennifer. The feelings of love, hope, and yes, even the fear you face were beautifully expressed. If we could just get everyone we know to make just a $5 donation or volunteer their time to walk, it will have great impact.