Author: Christie Taylor

I listen to empty nester friends–– or near empty nester friends–– share stories of re-visiting old independences and exploring new ones. There is talk of extended trips and couples-only vacations. Their children are nearly independent; close to graduating high school or in their college years.

Sometimes, I feel the edges of the future weighing me down. Like a framed painting, the weight of the frame tucks the canvas into place. Wil is going to require our care forever.

Though I always knew Wil would need our care forever, I didn’t really know…until I walked further down the road.

When Wil was younger I was too busy defying the odds. Forging our own path. Wil had therapy from nearly day one. I was quick to surround myself with friends on the same journey. We went through feeding strategies together. Then speech therapies. And helped our kids learn to walk with miniature treadmills. Speech and walking do not develop simultaneously. When one of our children took a first step, or said their first word, we erupted in congratulations. This meant our child who walked but didn’t talk would soon say their first word. Or after the first word came, walking would soon commence.

To the outside world these were exciting but expected milestones; to us this was everything. In this way we forged our paths together.

Then on to potty-training…oy vey! The record got stuck in the groove on that one. Wil flushed every fool-proof solution down the toilet, then went to pee in the closet. When people ask me now how we did it, I truly answer, “I have no idea.” Those early years were lived in-the-now; exactly where I needed to be. When parents spoke of their older kids with Down syndrome; of the loneliness, of the need to be ever-diligent in creating friendships, seeking out opportunities, uncovering new resources, I listened, but I didn’t fully grasp their meaning. And yet I held on to their words, like a classic book. I knew what I held had wisdom in it, even if I didn’t have the time just yet to sit down and take it all in. So, I tucked it away for another time.

Now is that time. I understand now the loneliness, the diligence in creating activities and opportunities for friendships. Life has become a more complex tapestry. The words of wisdom I heard many years before are now taking graspable shape in my own life.

Like many parents in our situation, I’ve sought out teen friends with Down syndrome. We recently had a park date. Wil became overwhelmed and took off across the field. One of the friends also felt overwhelmed so sat down next to a tree and didn’t budge, while another friend planted himself on the swings, and yet another friend continued to climb on the play structure until her mom said it was time to go for ice cream. At the ice cream shop, one of the friends dropped to his knee to propose to the female friend in our group. His mom said he needed a job before he could get married. He said he had one, he unloads the dishwasher at home.

I am so thankful for these parents and for our shared experiences together. There is never a shortage of humor, and never a need for explanation. We all understand right where we are. And we are exactly where we need to be.

There may be couples-only trips and extended vacations in our futures, but our children with Down syndrome will always be somewhere in that picture.

Though it is the heavy frame that holds the canvas, as I step back the frame fades into the background and the canvas takes over. I’m absorbed, and expanded, by the experiences of colors layered one upon another to create a powerful story. And like any great painting, I know there is never just one story. There are many more just waiting to be discovered, grasped and experienced exactly when they need to be.

I’ve heard Down syndrome called Up syndrome. In the beginning, this upend in terminology enabled me to rise above the mess of emotions I was entangled in to better sort them out.

Then an interesting thing happened…over time I became increasingly grounded in my daily life; more than I had been in a long time. Wil was the gentle hand who guided me “Down” to my roots; to the person I was always created to be.

His ability to do this is not intentional. It is, simply and powerfully, because Wil unerringly stays true to the person he was always created to be.

I no longer think of “Down” in a negative sense. It’s a place to ground ourselves, and in so doing find we are moving in just the right direction, at the right time, and in the place we were meant to be.

When Wil was born, why a 3rd copy of the 21st chromosome occurs was — and still is — a scientific mystery.

When I struggled to gain acceptance after Wil’s diagnosis, I sought out a support group. My new support group friends hugged me and said I would know a great joy, even though I couldn’t see it now. A deeper mystery.

When Wil’s physical therapist said he had low muscle tone but would most definitely walk, I asked when. She answered that was up to Wil. An enduring mystery.

We live in an Information Age. And yet, I am thankful to know mystery is alive and well. Without it, I would have got caught up in how Trisomy 21 happens, rather than the more important fact of how my son will grow and thrive with Trisomy 21.

I’m thankful — and now understand why — my fellow support group friends could not explain the great joy I would soon come to know. It is an answer learned only by living; and extends beyond words. I now make quick friends with other Trisomy 21 parents as we share in this knowing that we have lived to learn.

And if I knew, or had a baseline idea, of when Wil would walk, I would have overlooked any millimeter of progress I then so desperately sought. Every success was a surprise gift, no matter how seemingly small.

Yes, mystery still exists! Just ask anyone who loves someone with a disability.

Our world is one of highly anticipated outcomes, interspersed with daily surprises — all the makings of a great mystery. And that’s no sh*t Sherlock!

Jamming to the “other” Luke on his passenger ride home on this gorgeous Sunday 🌻 This guy knows how to live out loud, even if he doesn’t know all the lyrics. 🤩