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Why Experiencing 'Firsts' in Life Can Be Difficult for Parents of Children With Disabilities

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Today Theo, my 13-month-old son saw and felt the waves of the ocean for the first time. A surprising calmness came over his little body as he heard the waves crashing and saw the sun setting. After a tough few months aiming to establish some type of equilibrium with his mood, seizures, sleep, and function, it felt like a real win. It was maybe the first “first” of parenthood that didn’t fall too far out of range.

I’m cutting the experience some slack, much of the way I think I tend to shade things a little rosier when writing about them compared to how they are in real life. The “firsts” thing is a real struggle for me and many of my sisters who are mothers of children with disabilities.

I think the reality that pierces the deepest, is that many of the “firsts” won’t ever come to be. Not in a hopeless way, just in an “unless-modern-medicine-plays-magician” kind of way. A first tooth, a first road trip, a first swim, first time taking weight through hands, a first taste of ____, a first ride on the bus, a first birthday. Our list is often shorter and more compact.

I think a lot about you other first-timer parents as you capture these moments. I feel this energy inside, like it’s a duty of mine to stand on the other side and hope those “firsts” are seen as miracles, even with the tension of the challenge of parenting. I’ve learned so much from other new mommas, with neurotypical kids who wear gratitude with ease in these first moments.

It’s comforting to know that maybe, just maybe, when your little ones are bigger and they see someone who seems a bit different, they will walk over, and not away. They might ask his name, ask him questions, and come back to tell you about their first friend with a disability.

Originally published: April 10, 2018
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