The One Thing I Wish All Parents of Kids With Extraordinary Needs Realized

My son’s neurologist said something to me at a recent appointment that I will never forget. We were going over everything we do to try to help him make developmental progress and increase his strength. He has weekly physical, occupational and speech therapy appointments. He has multiple pieces of equipment at home, and almost every second of playtime is a learning experience. We have been working diligently to achieve any degree of progress.

Our son has PMM2-CDG (congenital disorder of glycosylation, formerly known as CDG 1a), and nearly every body system is affected by this genetic condition. He is severely developmentally delayed with low muscle tone. He will be 3 years old in April and is still trying his hardest to sit unassisted. He is fed with a feeding tube 24 hours a day and sees multiple specialists to monitor his disorder. Just when I feel like we are understanding him and making progress, something else comes up.

After going through his long list of tasks and updates, his neurologist said, “He’s climbing Mount Everest.”

I’ve been thinking about this recently, and one thing I wish all parents with children with extraordinary needs realized is that we are all climbing a mountain. Every single one of us has our very own Mount Everest. You can’t compare or say your trip up the mountain is worse or better because it’s your trip only, no one else’s.

I have ended friendships because of the comparison game or the “one up” constant battle. Can’t we all lend a hand along the journey instead of comparing? Can’t we all encourage each other to take the next step up to the summit? There will be steep slopes and there will be gentle slopes, but what is gentle to one may not be gentle to another. What is steep to me may not be steep to you. You know why? It’s my Mount Everest.

No matter what you are struggling with, it’s yours and yours only. For some of us, the trip up the mountain may take longer, and some of us may never see the view from the top. But if you’re like me, I know I won’t give up until I get there.

I know there are days when it feels like the top is too far and too hard to reach. I know there are days where we stumble and take a few steps back. There are days where we are simply at a standstill. But we’ll keep climbing because the view at the top is going to be extraordinary. So to all parents, keep climbing, and try to remember that the view at the top will be much more enjoyable holding hands. We’re all climbing.

Follow this journey on Team Christopher S.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.