What I Tell Myself When I Worry About My Child With Special Needs’ Future


Ivan is 10 years old. He’s not a baby anymore, but he’s also not a big kid yet. I mean, he’s big — the biggest he’s ever been! — but I can still pick him up when I need to.

My husband says, “These are the salad days.”

Yes, that’s a real phrase. I had to look it up! It means these are our best days. This is when everything is at its peak, and we are at our happiest.

But if you’re a glass-half-empty person, another way of looking at this may be that it’s all downhill from here.

Ivan has significant disabilities. He’s blind, nonverbal and in a wheelchair. Does that define Ivan? Of course not! But those are important factors in our everyday lives.

When Ivan was a baby, we also had all the challenges that come along with having a baby: breast feeding vs. bottle feeding, not sleeping through the night, etc.

Then there are also all the good parts of having a child who has a disability and is still little: You can pick them up easily, diaper changes aren’t that difficult and they’re certainly not socially frowned upon. They’re still cute and everyone wants to hold them!

But what happens as your baby gets bigger?

At 10 years old, we’re still in that sweet spot between baby days and big kid days. He’s sleeps through the night, enjoys eating just about any meal you place in front of him and (cue the trumpets) he’s mostly toilet-trained! I can still pick him up when I need to so transfers aren’t breaking my back, and he’s still super cute (even if I am biased).

Let’s also throw in that my husband and I are still relatively young and healthy, so caring for Ivan isn’t physically taxing.

I think these really are our salad days!

I’ve been thinking about this a lot lately. If these are the best days we have, then I should cherish them. But it also worries me endlessly about what happens next. What does the future hold for our family, especially for Ivan?

So this is what I tell myself (and maybe this can help you, too):

People are amazing at coping and adjusting. Think about all the things that have happened in your life that seemed like absolute tragic game-changers at the time. Did you give up? Did you stop living? No! You dealt with the change, picked up the pieces and moved on.

Remember when you first learned your child had a disability? It might’ve been painful at the time, but you adjusted to the news, learned to live a new life and moved on. You just did it because that’s what people do.

And now life is so good, you’re actually referring to it as the best it could possibly be! Ten years ago you never could have imagined cherishing your life the way you do now. But you do. And you know what? You will feel the same way in another 10 years. Ivan will be (gulp) 20, but when he’s 20, you’ll be loving everything about him. Sure, there will be new challenges, but you’ll find solutions and you’ll deal with them.

Remember this: People who ask if the glass is half empty or half full miss the point. The glass is refillable.

Amber Bobnar the-mighty-07132015-002

Follow this journey on Wonder Baby.

The Mighty is asking the following: Share with us the moment you stood up for yourself or your child in regards to disability or disease, or a moment you wish you had? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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