Tag Archives: Rare Disease Day

Ode to Bennett on Rare Disease Day 2017

The last day of February every year is Rare Disease Day. Though technically Bennett doesn’t have a “disease,” his genetic condition, Chromosome 18 Deletion Syndrome, is very rare and impacts him and our family like a chronic disease, one we will live with forever that can’t ever be cured, only managed.

The Boy Band called -- they want Bennett to join.

The Boy Band called — they want Bennett to join.

We’re fortunate he doesn’t have any of the health complications that are associated with the condition, from congenital heart disease to growth hormone deficiency. But he does have delayed development and cognitive impairment along with an autism diagnosis.

Still, in spite of these challenges, this is a kid who loves life when things are going his way. He’ll hike up a mountain without complaint, swim till he’s water-logged and delight in travels that take him to jungles, desserts and world-famous zoos.

Bennett has taught us so much about what it means to love unconditionally, and to see the ability in disability. We’re proud of his many accomplishments over the years, and we know he’ll continue to surprise us and make us laugh along the way. They say the struggle ends when gratitude begins. So, instead of getting bogged down in the challenges involved in raising a child with special needs, I try and see Bennett’s differences in a positive way. This poem is a good start:

Here’s to the the kids who are different,

The kids who don’t always get A’s,

The kids who have ears twice the size of their peers,

And noses that go on for days …

Here’s to the kids who are different,

The kids they call crazy or dumb,

The kids who don’t fit, with the guts and the grit,

Who dance to a different drum …

Here’s to the kids who are different,

The kids with the mischievous streak,

For when they have grown, as history’s shown,

It’s their difference that makes them unique.

— Digby Chelsea Wolfe

Here’s to you, Bennett. You’re a rare kid who dances to a different beat. And we’re happy to keep dancing with you. xoxo

With Bennett, the journey is as exciting as the destination.

With Bennett, the journey is as exciting as the destination.

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