APPRECIATING DISABILITY: 20 THINGS TO EMBRACE

When we get caught up in the day-to-day nuances of raising a child with a disability, we tend to dwell on the tough stuff: IEP meetings, doctor’s appointments, developmental delays, behavioral challenges. When we get a chance to talk to our friends or family, we often need to vent about our frustrations and struggles. But we all know there’s more joy in this journey than pain.

Last night my 5-year-old son, who has Down syndrome, popped up from his bed as I was sneaking out, thinking bedtime duties were done. He said, “Mom, mom,” and motioned for me to join him. As I climbed into his toddler sized bed and squeezed in for a cuddle, I started thinking of all of the little things I’m so grateful for … the beautiful differences he has because of his extra chromosome.

These differences are magnified now because he has two typically developing, younger siblings. I know we’re not supposed to focus on the differences. I’m the first to preach that he is more like his peers than different.

But since today marks the beginning of disability awareness month, I want to celebrate the unique joys I never would have known if my first-born didn’t have Trisomy 21.

In no particular order, here’s a list of things odd or sweet or serious that I admire, love, and appreciate about my amazing little guy:

  1. The way he melts into me when I hold him. It’s like his whole body molds into mine. I cherish this perk of him having low tone.
  2. He still fits in a toddler bed at age five. Money and space saver!
  3. He still sometimes calls me mama.
  4. The sassy way he yells Mom when he needs something from me.
  5. Celebrating things like Santa and the Easter Bunny might last a bit longer in our house.
  6. The bittersweet relief of not having to squeeze into disgusting public toilets and port-a-potties with him yet.
  7. His small stature means he can share clothes with his little brother.
  8. His small stature means he’s not outgrowing some of the activities his younger siblings are just starting to enjoy.
  9. His small stature also means he can pass as a younger child, allowing him to still get discounts at festivals and movies … But we would never, ever, never, ever do that …
  10. The way his extra wide hands intertwine with mine.
  11. His speech delays mean I will never take for granted when he or his siblings are talking up a storm.
  12. The way he commands the room when he speaks.
  13. The way his body is chaotic yet controlled when he runs.
  14. He has put me in and pulled me out of the most painful, vulnerable time of my life and managed to make me a better, stronger, more compassionate person in the process.
  15. He has introduced me to amazing, lifelong friends I would never had met without him.
  16. He has taught me that meaningful inclusion in all aspects of life is critical to live by, not just pay lip service to.
  17. Through him I am learning what really matters. What’s really worth a fight and what I need to let go of; and that you really can catch more flies with honey (though it’s still so hard to be nice sometimes).
  18. He has taught me to be patient.
  19. He has taught me that every person matters.
  20. He has taught me to embrace his differences; to make him better with out making him conform. He has shown me that disability is natural.

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