Monday, February 7, 2011

CHD Awareness Week

This week is Congenital Heart Defect Awareness (CHD) Week. I never heard of CHD until Colin was 3 days old, when he was diagnosed with Hypoplastic Left Heart Syndrome (HLHS). Colin's left side of his heart developed too small and was not functional. He has had 2 out of the 3 series of operations to reroute his blood flow.

Colin's heart will never be fixed, he will always live with a CHD and will never have a fully functional heart. After surgery number 3, Colin may not have any more, he might require more surgeries, he might need a transplant, and even his heart might just give up. This is the future we are faced with but we are fighting and fighting hard! Many children do not get to fight this long, so we know we are blessed.

We have the privilege of our story being featured on another blog today to raise awareness. Please visit this whole week to read many stories just like ours.

To raise awareness, I though the best way is to give you a real peek into what having a child with a CHD is like.

I rely on God, doctors, medicine, hospitals, technology, and nurses to stay alive. My family has spent many days/nights by my bedside crying, praying, laughing, and hoping for the best. I have had two open heart surgeries and awaiting one more. I can not live without medical intervention. My mommy fears when it is time for the next surgery because I will be more aware and she is afraid that I will be scared.
I have spent more time in a hospital in the first year of my life, than most adults will ever spend. I now have a fear of anybody in a white coat. I have seen my pedritican more than my 4 year old sister ever has. I hate scales, I used to have to be weighed everyday and now cry when I see a scale. I am happy even in the toughest of situations. I know I am a miracle and the chance of life is an opportunity not all get to have. Some might feel sorry for me, but my family and I are proud of me!I am fascinated with BOATS, Love Boats, Boats is one of my favorite words to say. I will own a boat one day :)Like every 2 year old, I love to swing. I love to play at parks. People are often amazed at how well I talk and move about, because they think I am a lot younger than what I am because I am small for my age.

I love powdered donuts, who doesn't. I used to hate to eat. I would cry because it hurt too much. I would gag on solid foods and throw them up. I had to go to therapy to "learn how to eat" a simple basic function of life was not very easy for me.

I love to climb, I get onto the chair all by myself. I like to say "Cheese" when mommy pulls out the camera which is like 500 times a day. She thinks she might miss something if we don't take lots of pictures. I think she fears of what happens if I am not around to take pictures of.

I love pushing my trucks around the house, scuffing up the walls. It took me longer to walk than most babies, but at 15 months I finally did it. I am a true boy at heart. I am rough and tough, sometimes too rough and tough. I get to go to time out just like other kids because of me being too rough!
I do get tired of all the pictures. This is juice in my cup. I still won't drink much milk from a cup, call it a comfort thing. Mommy has let me still have a nigh time bottle because of all I have been through, she likes that I love the bottle now instead of hate it. But I am getting too old for it and it needs to go bye-bye.
I love chocolate cupcakes.. what 2 year old doesn't?? I look just like every other kid my age, I don't look or act sick.
I wake up with horrible bed head! When my mommy puts me to bed, she thanks God for each day I have spent with them and she prays for even more days.
I throw tantrums just like very toddler my age! Though this one is a great relief to my family, as I am begging for food. Feeding used to be such a struggle and I have always been underweight for my age. I have given my mom a few white hairs at her "young" age due to the stress of feeding time.

I love playing hide-n-seek with my sister. I love my sister. I follow her around like her shadow. I want to do everything she is. My parents treat us the same even with my special heart. I know one day I will have limitations and may not be able to do all that she does. But we will deal with that as it comes. For now, I will chase her around and pester her as a little brother should!


Sherry said...

Great post, Jennifer. I'll have to stop reading these at work; I get tears in my eyes, remembering.

How much Colin has taught us all about what's important.

Keep raising awareness about CHD's!

sunshine said...

It still brings tears to my eyes and fear in my heart to recall the beginning of this journey Sometimes we forget when we look at Colin today, for just a few moments at least, he is a typical going- to be- two- soon kid. Colin ,his mommy and daddy, and even his big sis , along with all the stories you have shared about CHD children and their families have taught us so much about life, love, happiness, and joy. Colin's journey will always be paved with sooo much love and support.