Fair warning: I am about to tell you the exact opposite of my last two blog posts. In those posts, I talked about why it’s so important to accept your child’s disability and help them be okay with it as well so they can learn and grow. If you missed them, you can read those two posts here and here. That’s all true, but I have to argue the other side for a minute.
As much as it’s important to support a positive image of disability for your child, you have to know that it’s also okay to grieve the loss of the future you imagined for your child. It’s also okay to be frustrated that you can’t take that family vacation because you had to schedule surgery instead. It’s also okay to be full of rage when the school doesn’t listen to you and understand that your child is capable of so much more than they realize. It is okay to have negative feelings about your child’s disability.
The reason I am so passionate about accepting your child’s disability is because so often we only talk about the bad parts. Think about it, when you tell someone that you have a disabled child, what do they say? Do they say, “Oh, how awesome! I bet you’ve grown a lot as a parent and as a human being. What fun things do you do with your child?” Or do they just simply say, “Oh okay,” as if it’s the most normal thing in the world have a disabled child? I wish! (But hey, that’s the dream, right?)
I’ve heard people say a lot of things in regards to my sister’s disability, and they don’t say any of the above. Instead they say, “Oh, that’s so awful.” “Mmm, that must be so hard on you.” “I’m praying for you and your family.” Or my personal favorite from a previous boyfriend, “I really wish I could fix your sister.” *Cue a big eye roll from me.
All of these responses immediately evoke my defensiveness. Why does my sister need to be fixed? Why can’t she just be an awesome human being with her disability? Why do you assume that our life is so much harder than yours? Why do you assume my family grieves for my sister’s disability every day when the initial surgery and hospitalization was almost twenty years ago? Why do you assume we need more prayers than other people? Why do you think the fact that my sister has a disability means you know anything about our lives?
If you can’t tell, I get quite fired up about these comments. But I digress. The reason I advocate SO MUCH for accepting your child’s disability is that everyone else in the world shoves how horrible disability is in your face.
But the fact of the matter is, it’s not black and white. You don’t have to choose to be upset about your child’s disability OR completely hunky dory with it because it’s all sunshine and roses (it’s not).
One of the greatest phrases I’ve learned in these situations is “both, and…” You can be BOTH grieving AND content. You can be BOTH upset AND joyful. You can be BOTH frustrated AND grateful. You can be BOTH raging AND calm.
I am aloud to be both super happy that my sister was a bridesmaid in my wedding and be a little sad that I felt I couldn’t ask her to be my maid of honor because she couldn’t plan the events and all the work would have fallen on my mom. I am aloud to be both super proud of my sister for breaking a board in her karate class and sad that we don’t have the same “sister bond” that I imagine other sisters to have.
As human beings we weren’t built to just experience one emotion at a time. We’re complex. We feel many, often conflicting, emotions all at once. It doesn’t mean we’re wrong. It just means we’re human.
So yes, I want you to have pride in your child AND their disability. Yes, I want you to help your child know the dignity of being whole just as they are, disability and all. But I also want both of you to know that it’s also okay to be upset about their disability every once in a while.
Just remember to look for the “both, and…”
I want to know, what is your “both, and…?” Let me know in the comments below!