Please Stop Trying to Make My Child Normal
By: Kathy Mcclelland
Tags: Disability, Motherhood, Family, Identity, Parenting

We invited a family over for dinner. (See: Sometimes it’s easier to be the one inviting than invited.) It was meant to be a time to gather around the table and catch up. In fact, we used to see this family regularly, but it had been awhile. Since then, we had a child born with a severe disability. They weren’t entirely used to being around Nathan and they didn’t know everything we had been through in the last several years of his life.

It was uncomfortable

It was uncomfortable because they were uncomfortable with our child and I couldn’t make it better for them. We had six years to process and grow to accept our child’s fragile body and delayed mind, while they were trying to come to grips with it throughout dinner. And by coming to grips, I mean just knowing how to interact with us and our child.

The husband repeatedly kept trying to compare our son to his son…when he was a toddler.

Our son is tube fed because he can not eat very much food by mouth without aspirating. What he does eat by mouth, at the age of six, is comparable to baby food. I puree, or mash-up, potatoes, and avocados. I give him yogurt and pudding and applesauce. Mostly kid food, but it looks like baby food because it has to be a pureed consistency. At the dinner table, he commented,

“Oh, that’s how my son learned to eat!”

When Nathan would coo throughout dinner we would try to guess what he was trying to tell us. Or, when we used our limited sign language vocabulary with him he would say,

“Oh, that’s how my son learned to talk!”

And as he crawled around on the floor and pulled up on the countertops and cruised along the surface to try to get around the room to the best of abilities he again said,

“Oh, that’s how they all learn to walk!”

Now I know my friend’s attempts at conversation were intended to encourage me and make me feel like my son would develop because this is how it’s [typically] done.

The problem is that my son is on an incredibly delayed timeframe and we honestly don’t know if any of his skills will develop beyond where he’s at right now. It’s just part of his disability. He learns some things and others he doesn’t. Sometimes he will develop a skill and then promptly lose it.

I take nothing for granted in my son’s life and that’s why my house guest’s repeated attempts to normalize my child, hurt.

Of course, I want my son to learn how to eat more solid food and liquids by mouth. I want him to learn how to communicate more with sign language, and if he learns how to talk, that would send me over the moon. To see him walking to me would be the best gift. What a miracle for him to be able to walk without the help of a walker.

Of course, all of these things are important to me. But I do not live with my head in a hole that my son is going to live a perfectly normal life. And therefore when someone comes along and compares the things he is doing at the age of six to what a neurotypical child does at the age of nine months, it hurts.

I love him for who he is, not for what he does

I want my son to be loved and accepted for where he’s at and who he is. Regardless of whether he walks, talks, and eats by mouth. His value is not found in meeting those milestones. It is found in his existence. His personhood. The soul inside his broken body, which is worth more in the eyes of God–and his mother–than any an entrepreneur who can raise one million of capital in his first year of business.

There is a quote from the book Gilead, that has stuck with me over the years.

All that is fine, but it’s your existence I love you for, mainly. Existence seems to me now the most remarkable thing that could ever be imagined.— Marilynne Robinson

Never forget sweet boy that I love you for you. Because you are mine.