I think I've been in denial about Eliah's condition for the past four and a half years. Even when he was in the hospital for his brain bleeds, it never crossed my mind (at the time) that he would die. I knew that other people had died with the same condition, but it never occurred to me that my son could pass from such a thing.
I think I'm finally beginning (JUST beginning) to realize how critical Eliah's condition can be. When we talked with the Neurologist, he discussed the fact that Eliah could die from a seizure. His autonomic nervous system could give out, and he could stop breathing. The doctor talked about how putting a oxygen monitor on him at night would not prevent a particular end result. And we sat there and nodded and acted like we understood that he really meant death.
It wasn't from truly comprehending what is medically going on with him, but rather seeing it black and white that makes it sink in. It's all in the writing in front of me. I received his discharge papers from his Occupational Therapist yesterday afternoon.
The medical director at the Child Development Center spoke with Eliah's Neurologist, and doctor said that yes, Eliah could die at therapy. He is too fragile to go to therapy. It's hard to understand this when you look at him. He doesn't look sick, just delayed. He's strong and happy, how could be too fragile?
But I get now. I GET IT. He could die any given moment of any given day. Any one of his six seizures yesterday could have been "the one".
So what do you do with that information? You give him all the love you can. You take lots of photos and videos. And you do what you can to make great memories for him, and for the whole family.
We are looking forward to Make-A-Wish creating his wish this coming spring. And through a friend's suggestion, Eliah will be getting a Dream Cake for his 5th Birthday through Icing Smiles. They sent me an email last night, saying that Eliah met the qualifications and will be receiving a cake. Here's their link on FB if you want to see what it's about. https://www.facebook.com/#!/icingsmiles
Now I am going to go love my children.
I think I'm finally beginning (JUST beginning) to realize how critical Eliah's condition can be. When we talked with the Neurologist, he discussed the fact that Eliah could die from a seizure. His autonomic nervous system could give out, and he could stop breathing. The doctor talked about how putting a oxygen monitor on him at night would not prevent a particular end result. And we sat there and nodded and acted like we understood that he really meant death.
It wasn't from truly comprehending what is medically going on with him, but rather seeing it black and white that makes it sink in. It's all in the writing in front of me. I received his discharge papers from his Occupational Therapist yesterday afternoon.
The medical director at the Child Development Center spoke with Eliah's Neurologist, and doctor said that yes, Eliah could die at therapy. He is too fragile to go to therapy. It's hard to understand this when you look at him. He doesn't look sick, just delayed. He's strong and happy, how could be too fragile?
But I get now. I GET IT. He could die any given moment of any given day. Any one of his six seizures yesterday could have been "the one".
So what do you do with that information? You give him all the love you can. You take lots of photos and videos. And you do what you can to make great memories for him, and for the whole family.
We are looking forward to Make-A-Wish creating his wish this coming spring. And through a friend's suggestion, Eliah will be getting a Dream Cake for his 5th Birthday through Icing Smiles. They sent me an email last night, saying that Eliah met the qualifications and will be receiving a cake. Here's their link on FB if you want to see what it's about. https://www.facebook.com/#!/icingsmiles
Now I am going to go love my children.
2 comments:
It is so hard sometimes for our brains to wrap around cold hard black and white facts that we might lose someone so dear to us, especially a child at such a young age. I know our situation isn't as critical as Eliah, but it does open your eyes as to how very precious life is. We need to cherish every momment with our children and give them as much love as we can. Those memories that we create for our families will linger on forever.
I am so sorry that this is something you HAVE to absorb, take in and accept. I wish like hell it wasn't. You SHOULD be proud of them. They are wonderful, unique, special and courageous. You are a warrior and you are brave, strong and hilarious. You really are Anncredible.
I'm proud of you.
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