You receive an unexpected label. Your life gets thrown off balance. But you have the label. A definition. A meaning. It makes this unexpected label tangible even if it doesn’t make sense in your life yet. The label is so foreign you can run your hand right through it as if it were a ghost. But the ghost hovers all the same. You have so many unanswered questions. The ghost is almost an illusion with barely defined lines.
What does this all mean? Why did this happen? Will it affect my marriage? How will it affect his sisters? Will he have friends? What will he do as he gets older? As difficult as those questions are, you still have questions to ask. They fill in the outlines of the ghost. Soon, you find more and more answers. That silly ghost isn’t so scary anymore. In fact, once you have filled in so many of the blanks, he is fully revealed for the fear mongerer his is and truly disappears. You realize you don’t need ALL of the answers. What you really need are friends that understand this journey and good physical, speech and occupational therapist, and specific health specialists. You discover that Trisomy 21 is not what you expected but no less beautiful place to be.
You have come full circle. You have full acceptance. Life is humming along for the most part, of course with certain bumps in the road. But you get through those, and you are coasting along. Then, 12 years later, you are watching a group of kids play in the lake. Your son wants so badly to play with them, but he can’t swim as well. He can’t swim as fast. You see him watch with yearning to do what they are doing. And it hurts you inside. And it’s not just at the lake that this is happening. It’s on the play ground. It’s on the soccer field. It’s pretty much everywhere he’s with kids his age. Kids his age are doing much more than he is physically capable of. They are moving faster, they are talking faster, they are moving on to big kid things. It’s not that these kids are unkind. There are always the kids that go out of their way to include your son. But the writing is on the wall. The gap between your son and his typical peers is growing. I thought about how I would discuss these upcoming changes with him as they come. How I would handle these changes as they come.
When Wil was born, I had a label. A definition. A meaning. Something tangible to hold onto even though my fingers went through the label as I tried to grasp it. But still, I was able to fill in the blanks and give the label an outline. I had specific questions to which there were specific answers. The journey, the individual experiences of our lives, have no such specificity. Just any day along the way can sneak up on you, encircle you with the wind of change, and leave you spinning and wondering at the solutions.I would argue that these are our true acceptance times. These are the times that you feel the fear and frustration underneath, but you would not change your child having Trisomy 21 for anything. This is the life you have, the life you embrace and love. Though my story and yours may not be parallel, we all have intertwined journeys that have no concrete answers. They can only be answered by living, sharing and by experience. I find that to be beautiful; to be truly living.
Yes, I have full acceptance of Trisomy 21. I started this journey with concrete answers. They helped me get my footing when I was grasping at air. Now, the answers are not so concrete. I suppose in a way, I’m still grasping at air. But now I find that air exhilerating. I guess that is when you really know you’ve truly come full circle. That even though you may never stop grasping at air, you are still thankful to be breathing it all in, to be exactly right where you are, right here, right now, even if it leaves you spinning at times.
Stories of Wil, my son, who has Down syndrome 