I don’t like to dwell on the fact that one of my children has significant special needs. Most of the time I just have three children, one of whom needs me a little more than others. But she’s just my daughter and I’m just her Mom. It’s rare that I think of us as different.
But this is what is the difference. It is exhausting. It just is. There are times when I try to figure out why I’m so exhausted, why I’m so stressed, why I can’t sleep at night. It’s because this parenting of a child with special needs is hard. It just is. I honestly don’t like to admit that because I think it makes me seem weak or that I don’t love my daughter. But that’s not true. Not by a long shot. What is true is that when you’re a good mother, special needs or not, it’s exhausting.
I think most of it is the worry and the uncertainty. Olivia’s had a really difficult time at the camp we sent her to. It takes her a while to get used to a new place, which is part of the reason why we sent her, but after 3 weeks, she still is having a hard time. Yesterday I got a call from the camp that she was making herself bleed and hitting herself so hard that they were afraid she would leave bruises. They asked if I had any suggestions. What was I supposed to say? I just went and picked her up. Then I called Matt because I was upset and then we kind of argued because he thought I should have just left her there. We’re both just frustrated. Because it just shouldn’t be this hard. It’s like she’s in this weird middle place of kids with special needs where she’s not disabled enough for certain groups and too disabled for other groups. I’m here to tell you right now that we parents of kids with special needs get very little help. It’s like being dropped off in a foreign country without a map or money and you don’t speak the language. It’s exhausting.
Even with her advanced verbal skills for having Cri du Chat, she still can’t tell us many things. Like why exactly she’s upset. She has a really difficult time with feelings and expressing them. It’s heartbreaking to see your child upset and have no idea exactly why.
On top of these worries, it’s the constant caretaking. I dress her, change her diapers, do her hair, brush her teeth, make her food, clean up her constant messes that are like a tornado came through, shave her legs, clean her glasses, help her walk, pack up the stroller, make sure she has her ipad, make sure she’s safe, it goes on and on and on. And it never stops. When you’re in the toddler stage with a child, at least you know eventually you’ll be out of it and they’ll be more independent. Knowing it will not end is what makes it so hard.
And then there’s the soul-crushing worries that worm into your brain late at night. I think part of the reason why I never relax is because I don’t like to allow myself the time to “go there”. To the place where I worry about what junior high will be like. High school. What on earth will she do after high school? What happens to her when we die? I think of her as an old woman missing her mom and dad in a strange place all alone and it makes me want to throw up. I know her brothers will take care of her but they’ll have their own life too. What will happen to her? It’s too much.
Like I said, I don’t like to think of us as different. But the fact is we are. Very different. And it’s hard. And exhausting. And we need help. And there’s too much to worry about and research and plan. It’s a constant buzzing in your head of stress and worry. That’s the difference. I wouldn’t trade her for anything but sometimes it just makes me feel better to understand what we’re going through and feel ok with it. And sometimes it’s just too much.