My child was recently diagnosed as disabled

My child was recently diagnosed as disabled!

Dear Aimee Abled-Mom of A Disabled Kid,

My child was recently diagnosed as disabled and that’s going to make her life so difficult. I never wanted that for her. I only ever wanted things to be easy for her and for her to be happy.

Signed,

Sad For Her

Dear Sad For Her,

I’m going to ask you a blunt question: Are you sad for her or are you sad for you?

It’s not wrong for you to be sad for you, but it’s important for you to be clear. What do you have to accept? That your child might not be happy, or that you might not be?

When my daughter was diagnosed as disabled, I read a book by Andrew Solomon called Far From The Tree. That is to say, I tried to read it. The book discusses at length the extent to which parents should and do accept, love, and encourage their children for who they are when they are markedly – horizontally, as Solomon puts it – different from their parents.  I was not ready for this book. I was busy mourning the child I never had, the parent I would never be. I was so busy being sad that I wasn’t actually present for the child I had. I picked the book up again a few years later and found it life-changing.

Solomon challenges every parent who says,” I never wanted my child to be homosexual or autistic or disabled or trans, etc. I am open and I’d love my child no matter what, but what a difficult life and I only want my child to be happy. I don’t want my child to have a difficult life.” Solomon pushes back. Aren’t we really saying that we didn’t want our lives as parents to be difficult? That we really wanted things to be easy for us?

Newsflash: parenting isn’t easy for anyone. If you think it is, you’ve fallen for social media. Parenting is tough even when the kids are healthy and typically developing. You and I haven’t been handed an especially sad hand. It’s a rarer hand. A poorly understood hand. One that requires more advocacy than most. More patience perhaps. But I don’t know anyone in a parenting role of any kind who doesn’t say that being a parent or guardian or grandparent or stepparent isn’t one of the hardest things they’ve ever done. One of the most selfless.

Read more of Aimee’s Advice Column: Ask Aimee

I remind myself that my daughter’s disabled life is the only life she’s ever known. She was born this way. She doesn’t know what it’s like to live in an able body. She can see perfectly well that she moves more slowly than others, that what comes easily to me and maybe to you is more difficult for her. She knows she has to work harder to enunciate her words so that people who don’t know her can understand her. What comes easily to most children in school can be very challenging for her. And yet, that’s all she knows.

She doesn’t want pity. She doesn’t walk around talking about how difficult her life is, except when it comes to advocating for inclusion and accessibility. She loves being alive and she loves being herself and she is as happy as a person can be. Life is frustrating for her a lot of the time, but just yesterday she was showing me something new she learned in physical therapy and she said “Guess what, Mama? I really, really like myself now.” I think that’s because we stopped feeling sorry for ourselves for having her instead of some other baby. We all enjoy the child she is.

After I stopped mourning the baby I would never have, I spent a lot of time thinking about who she might have been if it weren’t for pontocerebellar hypoplasia, the neurological disorder that has caused her disabilities and medical complexity. I loved my daughter but hated her disability. It took me another few years to realize that my daughter would not be who she was without her disabilities. It’s difficult for me to say “I love pontocerebellar hypoplasia” because someday it will take my daughter’s life, but I both love and like my daughter so much exactly as she is that I have to acknowledge that she is who she is because of and not in spite of her disabilities.

So mourn. Be sad. Feel your feelings about what you never wanted for yourself. Your life is going to be different. It’s not going to be what you expected it to be. But the truth is, it wouldn’t have been anyway. When I agonized about my daughter’s terminal diagnosis to one of my friends, she pointed out that I have equally little control over what happens to my typically developing child. “She could get hit by a bus and die long before her sister,” she said somewhat undiplomatically. But she was right. I can’t control any of this.

I’m very much aware that parenting is a very long process of letting go, starting with cutting the umbilical cord and gradually, slowly, giving our children more and more independence and autonomy. We can’t plan the outcomes of their lives. We are guides when our children are young, but at some point, they begin to guide us and we’re along for the ride. Enjoy the ride. It might be bumpy, but it could be really wonderful, too.

Xoxo Aimee