By John Duff

“Dad! My arm.”

img_0256I glance forward to where Talia has been trailing her arm through the ultra-warm waters of Tisbury Great Pond. I can remember that feeling as a kid — dropping my hand over the side of a boat and wiggling my fingers through the water, feeling the current as the water moves through and the boat propels forward.

I am pleased with myself. Here I have found an outdoor activity to enjoy with my daughter, despite her physical limitations. When she was born with Down Syndrome it slowly began to dawn on me that my dream of returning to the Pacific Crest Trail and hiking it this time with kids had just gotten a bit more challenging. When she struggled to walk, I just chalked it up to her being on her own schedule, but didn’t give up hope. But when her physical abilities continued to diminish and walking independently became an impossible dream, I realized that a large part of parenting was giving up on the plans you had for your kids and accepting that they were going to have their own path.

But I didn’t give up on instilling in them a love for the outdoors. Hence, the kayak. Kayaking seemed like a decent compromise. It didn’t matter that she couldn’t walk — we could still have adventures outdoors. If her extra chromosome had cursed her with loose joints and low muscle tone, there was no reason she couldn’t wield a paddle in the front of a two-person kayak.

I picked out a double kayak that could hold the whole family when the kids were young, but as we grew would become the boat Talia and I would paddle while her sister and mother explored in their own boats. It had worked perfectly. Except, that as she got big enough to wield her own paddle up front, her arm strength diminished due to the progression of Charcot Marie Tooth disease.

“Dad, my arm!”

With a jolt, I realize I’ve misinterpreted the right arm trailing in the water. I reach forward with my paddle and gently lift her hand back onto the rail of the kayak. Her hand trailing through the water wasn’t part of some idyllic summer’s day scene, it was someone struggling with limbs that no longer functioned. Her arm had fallen into the water and she couldn’t get it back up.

Oof. These days it seems that every time I get to spend some extended time with her, I am discovering more and more things that this disease has taken away from her. How long has this been going on? How many signs have I ignored? I think back to the cookout where I handed her a hot dog only to watch her stare hopelessly at it. She couldn’t lift it to eat it. Or the card games we love to play together where increasingly she needed help picking cards from the draw pile or putting cards into play. How many of these declines had I conveniently ignored because I didn’t want to accept her diminishing strength?

“Dad! My arm!”

I flick my paddle forward and lift up her arm. Could we still do this? This activity that I had chosen that would serve us through whatever the future held? In my mind I had imagined us island-hopping the coast of Maine — her older sister and mother in their own single kayaks darting in and out of remote islands up and down the coast, Talia and I bringing up the rear in our stout and stable double. Who cares if you couldn’t walk? You could still explore! You could still feel the ocean spray in your face, roll with the waves, experience the thrill of being in uncharted waters, out at sea, taking on the elements! Would I still feel comfortable doing this when my daughter struggled to sit upright? Couldn’t eat independently? Had trouble breathing while floating in the water?

“My ARM, dad!”

Interrupted from my thoughts again, I realize that, at the very least, she could still play. In fact, she’d been playing me all the way across Tisbury Great Pond. True, she couldn’t get her arm out of the water on her own, but I now realized she was deliberately flipping it off the side of the boat into the water to tease me. I flick my paddle forward and lift her hand out of the warm pond.

“Okay, that’s the last time. You drop it in again and I’m going to leave it for the fishes. They are going to think it’s a delicious little snack…five little wiggly worms dangling down for them. Yum, yum, yum.”