What Hope Means when Parenting a Child with a Disability

Not all four-letter words are as remarkable as hope, though I would make the case that many other four-letter words can be much more gratifying to say or to scream at the top of your lungs. Yet it’s the word hope — unlike all others — that has an amazing quality of adapting and adjusting to whatever it is that you’re facing.

Often, it’s with optimism that we exude hope. We hope we hit the jackpot. We hope that our plane takes off on time, or that our kid makes the team. Other times, the feeling stems from a place of grief or deep despair. We hope the bullying stops. We hope the surgery goes well.

As the mother of a young son with exceptional needs, my relationship with hope has undergone massive permutations over time and especially these last few years. And you know what I have learned? Choosing hope doesn’t always mean there’s necessarily a win to be gained. Sometimes, the awesome adaptability of this feeling means something greater than just a desired outcome. In my case, hope meant acceptance of the life that was meant to be mine all along — to be the doting mom to my sweet, happy boy Theo, who has a rare condition called Angelman syndrome.

For those brave enough to ask, I’m sometimes questioned about what it’s like to raise a child with significant needs, and how it is that we grapple with the unexpected changes in our lives. I tell them that my relationship with hope has simply gotten more serious.

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