I don't know why this has been so hard for me to write. I've been in denial and was content living there but since I can't stay in denial anymore I just feel lost and my heart breaks when I talk about LCHAD.
They confirmed Alexis does in fact have the same 2 mutated genes as Hunter, which means Alexis has LCHAD. I am relieved we have answers, I am relieved that Alexis & Hunter will be able to support each other in this journey, I'm sad for Alexis and I am scared. I am scared for what the future holds for my children. I am scared that something will go gravely wrong because people are writing Alexis' disease off as "not that bad..." it is that bad. Her day-to-day life may be normal but her disease is the same.
How can Alexis have it? She's never been sick! I'm actually getting annoyed of hearing that. I don't have answers for you, all I know is that if my kids eat enough everyday they will have enough energy everyday to keep going and if not they will end up in the hospital or worse. Alexis has always been a good eater... yes she's been really sick before (once) and didn't end up in crisis. We are lucky. This still does not change the disease.
My kids will live a normal life but they need to be treated a little bit different. They need to make sure they are eating what they need to eat everyday & it is important that we take extra precautions to make sure they do not get sick and those around us need to take those extra precautions. I hope everyone is listening to me... don't come around us when you are sick and get your flu shots!!!
Immediately after finding out Hunter had LCHAD my dreams of having a big family were shattered, how could I take care of 2 kids with special health needs. What if they both get sick and are both in the hospital at the same time? How can I split my time between hospital rooms? It wouldn't be just about keeping Hunter healthy and away from sick germs all winter, how could I do it with 2 kids? These were all questions and doubts I had that made me decide having more kids naturally was out of the question.
Well here we are.... 2 kids with LCHAD.
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