Coping

Today. . .

. . . I showed Charlie each of the trees and bushes that are planted in our yard. He tries to touch the green ones, and tries to lick the ones that are flowering.

. . . I stopped typing, looked over at Charlie in his Rifton Chair, and he gave me a quick smile before looking away.

. . . I got three friend requests on Facebook and they were all people I actually know!

. . . I thought about Melanie’s questions about coping with her special needs child.

. . . and I read this blog about a little girl who was sick and then gone so quickly.

I’ve gone round and round about how to describe coping when you find out your child is going to be disabled, and I’ve come to the conclusion that I’m worthless in that regard. Here’s a bit of how I dealt/deal with Charlie and my role as his mother:

When Charlie was born I went through a small moment of “why me?” In the years before Charlie was born I felt like I’d really grown as a person. I’d taught special ed for five years and the last two I’d done it in a low-income school. I’d tutored kids free of charge. I’d gone back to church and started volunteering there as well. I felt good about the person I was becoming and felt like I didn’t deserve to have a child who was disabled.

I knew in my heart, however, that a child’s disability has nothing to do with their parents. Every person comes into this world with their own journey and while mine and Charlie’s are linked, they are not the same.

And then one day I was sitting at the doctor’s office and a man walked by me talking loudly on his cell phone and he said, ” You need to ask yourself why God is bringing this to you.”

It was a novel idea at the moment. . . that God was bringing me a set of circumstances for a reason. And why indeed?

Maybe all that stuff. . . the working with special needs kids, the praying , the volunteering. . . maybe all of that was just getting me ready for this job.

These days I think I can honestly say that Charlie himself causes me no pain. Being a mom to a disabled child is fine by me. Do I hurt for him sometimes? Of course, but my hurt is that other people won’t see him as I do. I ache that the doctors are more concerned with sitting up than with the devilish grin he can give. I hate that people are worried more about walking than with his amazing giggle. I am sorry that people will be slowed by the trappings of disability and won’t get to know the Charlie that I know.

Is it conceited or crazy to think that I am uniquely suited to be Charlie’s mom? Probably, but that’s how I cope.

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Comments

  1. You are so good with words. this post is what I try to explain to people. I am blessed to have Daniel, but am I sad or scared, hurt and angry. Yes because of what he will have to go through because people won’t open their eyes and see how wonderful he is. I am not sad that I have him. I am proud to have him. I just want everyone to experience his awesome-ness and they are blind.

  2. Nadine Hightower says:

    You are fabulous!!! Go Bird Go!!

  3. i’m at a loss for words — and that does not happen often!

    all i can say is you are amazing and i truly believe that God was preparing you to be Charlie’s mom.

  4. I feel the same way you do as far as God prepared me for this journey–it’s amazing how perfect Clayton is for me even though he struggles with many issues.

  5. desperate housewife says:

    This does not sound conceited at ALL. Just a wonderful, graceful perspective on a situation some would choose to be bitter about. Made me tear up a little. This is exactly what I believe about all parents. Of course we all fail here and there, but I believe overall we ARE chosen for each other, parents and children. Our babies are meant for us. They need us, just ourselves, more than any teacher or friend or doctor or therapy.

  6. big dog mom pam says:

    I love reading your blog. I’m the sister of a special needs child and it’s amazing to me that you are writing about the same things that my mom believes about her journey as the mom of a special needs child. God couldn’t have picked a better mommy for Charlie.

  7. blairspage says:

    You and Charlie are a PERFECT match. Katy, just look at what you have done for him since he has been born. Look at the treatment alternatives you have provided for him. You are giving him more than you will ever realize.

    Do you know what’s sad? I did a purse party the other night and there was a little girl (age 2) that I think had CP. She couldn’t even hold her head up. Which I know cases are very different, but I also know the parents and they aren’t “working” with her like you do! I think that makes a huge difference. You are such a great Mom!!!

    Hugs – Tiff

  8. Wow. You just said so much.

    I hurt for Max too, still. I don’t feel pain at all anymore about having a disabled child, though that first year I did. Everything seemed so overwhelming and sad that first year.

    I have loved children forever; as soon as I was big enough to pick up babies, I did. As soon as I was old enough to babysit, I did. As soon as I could be a camp counselor, I was. I grew up playing with children and loving children. When I found out that Max had a stroke at birth, I will honestly say that I couldn’t understand why this had “happened” to me, someone who loved children so much, someone who had always so wanted to have a child. That was my grieving period. And it passed.

    I am still not a person who believes that I was chosen to have a child with special needs for any particular reason, but I do believe that I am lucky that I’ve had the strength, wisdom and stamina it can take. You do, too, Katy. You do, too.

  9. I choose to believe I was chosen to be Jude’s mom too, and I was special for a reason…helps me cope too. I think you are amazing!

  10. I think you are right on. As I read I thought the exact same thing; all the things you did led up to what you would need to do. You are perfectly suited to be Charlie’s mom and his champion. And for the record, I’d rather listen to Charlie giggle than see that baby walk any day. It’s so infectious, I love it!