It’s a really weird thing, accepting the news that your kid is going to grow up with special needs. I've been told many times that I’m adjusting well, handling the news so gracefully. Maybe it's true. I don't mope around the house all day long, depressed and forlorn. I'm not crying myself to sleep each night. I am loving every second of my new life as a mom of two boys, and watching their relationship grow. For the most part, my life and my attitude are the same today as they were before I found out my son was born with microcephaly and a malformed brain.
But honestly, I think the reason why it appears I'm handling the news so well is that I haven't actually accepted that its true. When I look at Dylan, it's impossible for me to see a single thing "wrong" with him. Yesterday he hit the three month mark, and he is doing exactly what I would expect a three month old to do. The smiles and the "conversations" we have just melt my heart!
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And yet, there are doctors and neurologists's telling us that Dylan will have all these problems. We are in a different specialist's office just about every week, trying to find answers and determine what we can do to best help our little man out. Each time I walk into another exam room, or talk with a new specialist, I get a huge lump in my throat as I wait for a piece of news that has the potential to tear my heart open again. I remember when Jack was a baby, it felt like we were at his pediatrician's office so often. Now, what I would give to only have the typical well-baby visits for Dylan, instead of specialist after specialist after specialist.
And there is a huge part of me...the part of me that can't possibly accept the truth...that is just waiting for this whole nightmare to all be over so that I can get on with raising my kid like every other typical kid.
Moms...remember when you were pregnant and you had those crazy, hormone-induced pregnancy dreams? Mine always had something to do with forgetting my baby as I went on with my life, or loosing him in a crowd of people. I could hear his cry, but could never quite find him. I would wake up sweating and shaking, terrified that one of these dreams could actually become a reality, and quickly place both hands on my swollen belly to assure myself that my baby was still safe within me.
And then there is the nightmare of having a baby with a serious problem at birth. Something that will affect the rest of his life, and make it that much harder for him to have a typical, happy and healthy childhood.
Right now I'm living in that nightmare, and waiting to wake up.
As we go from doctor to doctor, I can't help but feel like we are searching for a "cure" for Dylan. Like we're looking for the right doctor to tell us the right formula and solve this "problem" for us. And then I can wake up. But Dylan doesn't have a disease that can be cured. He will never NOT have microcephaly, and from what the neurologist has told us, his brain will never have the proper structure. We have no idea what this will mean for him or for us as a family long term, but it is something that we will eventually come to grips with.
So, yes, I guess I'm adjusting well...as well as anyone could. I love this little kid so much that it feels like my heart will burst. Because of what I know about him, I am rejoicing in each and every tiny thing he does, things that I might have otherwise taken for granted. Each time he smiles at me, I feel my eyes well up with tears of joy. But there are hard days. Really hard days. Days when the nightmare feels so overwhelming that I don't feel like getting out of bed. Days when I let myself start thinking about the future and what it could look like. It's a lot to think about, and it makes my heart hurt so bad that I just have to stop.
And then Dylan smiles at me, and Jack throws his arms around my neck and tells me he loves me, and I realize that it's worth it. No matter what happens, or how hard this journey is, these two boys will carry me through. A smile from either one of them is enough to make any hard day a whole lot easier. And it's enough to remind me that this life I am living, wide awake, with the two of them snuggled up on my lap, is my every dream come true.
Moms...remember when you were pregnant and you had those crazy, hormone-induced pregnancy dreams? Mine always had something to do with forgetting my baby as I went on with my life, or loosing him in a crowd of people. I could hear his cry, but could never quite find him. I would wake up sweating and shaking, terrified that one of these dreams could actually become a reality, and quickly place both hands on my swollen belly to assure myself that my baby was still safe within me.
And then there is the nightmare of having a baby with a serious problem at birth. Something that will affect the rest of his life, and make it that much harder for him to have a typical, happy and healthy childhood.
Right now I'm living in that nightmare, and waiting to wake up.
As we go from doctor to doctor, I can't help but feel like we are searching for a "cure" for Dylan. Like we're looking for the right doctor to tell us the right formula and solve this "problem" for us. And then I can wake up. But Dylan doesn't have a disease that can be cured. He will never NOT have microcephaly, and from what the neurologist has told us, his brain will never have the proper structure. We have no idea what this will mean for him or for us as a family long term, but it is something that we will eventually come to grips with.
So, yes, I guess I'm adjusting well...as well as anyone could. I love this little kid so much that it feels like my heart will burst. Because of what I know about him, I am rejoicing in each and every tiny thing he does, things that I might have otherwise taken for granted. Each time he smiles at me, I feel my eyes well up with tears of joy. But there are hard days. Really hard days. Days when the nightmare feels so overwhelming that I don't feel like getting out of bed. Days when I let myself start thinking about the future and what it could look like. It's a lot to think about, and it makes my heart hurt so bad that I just have to stop.
And then Dylan smiles at me, and Jack throws his arms around my neck and tells me he loves me, and I realize that it's worth it. No matter what happens, or how hard this journey is, these two boys will carry me through. A smile from either one of them is enough to make any hard day a whole lot easier. And it's enough to remind me that this life I am living, wide awake, with the two of them snuggled up on my lap, is my every dream come true.
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