Today was the day I finally started a blog. Every since my son Daniel was diagnosed with Charcot-Marie-Tooth disease this fall, I have felt the need to put pen to paper. Why? It's probably because it's hard to connect with friends and family - and even other parents of special needs children-when your child has a disabling condition. Possibly, it's because I thought I had something to write about. After all, if I was writing about the typical life of a working mom, I felt I would have no new subject to tread.
Despite these rather self-centered reasons, most of which are at the heart of any person's need to write incessantly about their own thoughts, I think the real reason that I wanted to write is because I wanted to share what I was feeling with other moms. I think that normally (there are exceptions) when parents write about a child with special needs, the ups and downs, and the daily problems, it falls into a few camps. The first is complaining and lamenting how hard it is. It is hard, don't get me wrong, but I don't feel better about hearing about other peoples' depression. The second camp is the upbeat mom. Let me tell you how I am dealing! Awesome, glad to know you are handling it well.
What I want to share is the one thing that is getting me through this. Yes, my son, who is well past two, cannot walk. Even more troubling, just six months ago, he could. I have no idea what to expect. Each day is filled with fear that he will be unable to ever walk, that he will be in a wheelchair, that he will be unable to use his hands, that he will never live a full life...what gets me through this is that I don't think I would be any less filled with fear if he didn't have CMT. I think I would be worried that his talking is delayed, that he learned the letter A quickly, but cannot point out B, C, or any of the others, that he has horrible separation anxiety, that...well any of the million things that you worry about all the time.
When we have a child, we truly do wear our hearts on our sleeves. Each and every day is filled with love for our child and fear for their future. It is the same no matter what your child has, who you are, and what your life is like. It is the one thing that truly unites us as parents.
Despite these rather self-centered reasons, most of which are at the heart of any person's need to write incessantly about their own thoughts, I think the real reason that I wanted to write is because I wanted to share what I was feeling with other moms. I think that normally (there are exceptions) when parents write about a child with special needs, the ups and downs, and the daily problems, it falls into a few camps. The first is complaining and lamenting how hard it is. It is hard, don't get me wrong, but I don't feel better about hearing about other peoples' depression. The second camp is the upbeat mom. Let me tell you how I am dealing! Awesome, glad to know you are handling it well.
What I want to share is the one thing that is getting me through this. Yes, my son, who is well past two, cannot walk. Even more troubling, just six months ago, he could. I have no idea what to expect. Each day is filled with fear that he will be unable to ever walk, that he will be in a wheelchair, that he will be unable to use his hands, that he will never live a full life...what gets me through this is that I don't think I would be any less filled with fear if he didn't have CMT. I think I would be worried that his talking is delayed, that he learned the letter A quickly, but cannot point out B, C, or any of the others, that he has horrible separation anxiety, that...well any of the million things that you worry about all the time.
When we have a child, we truly do wear our hearts on our sleeves. Each and every day is filled with love for our child and fear for their future. It is the same no matter what your child has, who you are, and what your life is like. It is the one thing that truly unites us as parents.
Susan and Dan, We are here for you if you need anything. My prayers for you are strong everyday.
ReplyDeleteThis is so very very true, Sue. Thank you for sharing your family story with us. Daniel looks positively gleeful in the pictures you have been posting. What a testament of your love.
ReplyDeleteThank you Jo and Erin for taking the time to read about Daniel!
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