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.