When Matt was born on January 12, 1995, and I received the painful surprise that my first and only son had Down syndrome, I was broken hearted at the loss of so many dreams that a father has for his son, and the life a father and son might share together.
What I have learned in the 18 years since then is that what I lost was real. I really do miss doing the things I imagined we would do together, and would be lying if I didn’t say that sometimes I am envious of my friends with typically developing children.
But I have also learned that there are gifts that I have received from Matt that have exponentially covered any loss I may have had. There are about two feet of spiral-bound journals on my bookshelf that speak to this more specifically and one day maybe I will tell the fuller story. But tonight, on this eve of his 18th birthday I wanted to write briefly about one of my favorite gifts that he has given me.
When Matt goes to bed at night it is Dad who does the night time ritual. I brush his teeth, give him his night time medicine, and then turn the lights off and lay down beside him. And I tell him a story: “Once upon a time….there was a little boy named Matt…” and I proceed to tell the story of his day as best I can. And when I get done I end the story with: “then Dad sang a song,” and I usually sing “Jesus Loves Me,” “You Are My Sunshine,” or “This Little Light of Mine.” When the song is done we hug. It is more like a squeezing contest and if I dare forget or get distracted and walk out of the room without the hug he calls me back in. Sometimes, when he is not quite ready to go to sleep he calls out to me: “You forgot something!” even though we already hugged.
Lately I as I lay beside him I think how lucky I am to be holding my 18 year old son, and my 18 year old son holding me…wanting to hold me…and realizing that what I lost – what I gave up was really nothing. I wouldn’t trade this for any normal thing in the world.