Additional Needs

When Mentions of the Future Make My Heart Ache…

Posted by Melissa Schlemmer on 13th May 2016 Additional Needs, Advice & Support, Disabilities

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They’re only 3 and 5 so the list was rather fun to listen to. My 5 year old stated that when he turns 6 he’ll get to drive a car, specifically a convertible.

We corrected him and said he needed to add ten years to that number, but I did mention that I can’t wait to ride with him as the wind blows through my hair.

The boys went on to talk about all the things my youngest son will do when he’s as big as them.

My chest tightened as I went along with their game.

I smiled at the idea of him driving a car even though those boys had no idea that will never be in his future.

Our youngest son is 3 and physically at the level of a ­6 month old child. He has a rare genetic condition, PMM2­CDG, that limits him.

He attends therapy nearly every day of the week; I can’t think of anything we don’t need to work on.

I know that there are milestones and moments in life that he will never experience.

I vividly recall an appointment with his metabolic specialist when she simply stated to the student who was with her that, “He’ll never have children.” I knew this, but hearing it aloud hurt even more.

As the boys were being silly and going on and on about their adventures they’ll have after they turn 4 and 6, I had to hold back tears and keep smiling. I was excited to hear their innocent dreams for the future but heartbroken that the future looks very different for our youngest.

As the day went on I kept thinking about his future and the more I thought about it the more I smiled. The tightness in my chest relaxed and my sadness turned to joy.

I scolded myself for thinking of all of the things he won’t do in the future.

I pride myself on concentrating on the abilities he does have rather than the ones he doesn’t, so why don’t I do that with his future?

To be honest, in the grand scheme of things, driving a car doesn’t matter. What matters is his happiness and quality of life. Those two things are things I can absolutely guarantee will be in his future.

His own children won’t be, but smiles will be.

A car won’t be, but giggles will be.

Walking down the aisle to his wife will not be, but plenty of hugs and kisses from me will be.

Walking unassisted may never be, but my hand holding his throughout his entire life will be.

So next time a moment in the future is mentioned, one that I know is a distant dream, I’ll smile and think of the possibilities rather than the impossibilities.