Life with HLHS

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Kacy Today

As I write this, Kacy is 5 1/2 years old and about to enter kingergarten. Wow, kindergarten! It is one of those milestones you think and dream about after your child is diagnosed with HLHS. Will they ever make it to that age? Will they be able to go and do all the stuff school kids do? Kacy will still be getting physical and occupational therapy while at school, but she will and can do all that kids her age can do, almost. The stroke may have affected her physically, but definitely not mentally. She has a determination about her. As I said before, a spirit about her. A zest for life! She remembers nothing of her surgeries. She knows her heart needed to be fixed and that she needs to always go for checkups, but that is just part of her world. She is now entering an age where there may be questions by her or by others, but I plan or giving her the answers. The answers to make her a better person, a stronger person, a happier person. She is special. She is a medical miracle. And I want her to know it and shout it, and let everyone else know about it...if that's what she wants that is. Because she is her own person, with her own thoughts and opinions. I helped give her life, along with all the others. It is now her life to live. No matter how short or how long that life is, I know a love like no other. She is happy, and she is healthy. Will it last? Nobody knows. Well nobody on this planet knows how long their health or happiness will last. So why worry or dread about it. Live each day to its fullest!  

Someday, when Kacy learns to read and write, I would like for her to update this website with her thoughts and opinions. I think it will help her. For she will forever be living with HLHS. And she will need to talk about it. If you ask Kacy today what her heart defect is called, she just sorta shrugs her 5 year old shoulders. She can tell you she has a half a heart that has been fixed. She can remind you to give her her daily childrens aspirin. That's all she wants to talk about it, as she runs away and plays.....

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