Wednesday, February 6

Tears and lots of them

For the past year I have focused on getting Tommy well. Literally keeping my son alive. First the colon surgery. Then colitis. Then open heart surgery. Then a gtube and ear tubes. Now that Tommy is better and fairly healthy, I now have been overcome with emotions related to him having Down syndrome.

At playgroup on Monday, Tommy had an early feeding therapy appt at 10:30. Just going to the appointment, being at the center, being around other kids with Ds all cemented the reality that Tommy has Down syndrome. At that moment all my emotions came forward.

It sounds strange that after a year I'm finally noticing he has Ds. And it's not that simple of an emotion. I'm sad thinking about how our communities still don't include people with disabilities and sad to hear people say they are "sorry" when they meet Tommy. . I'm sad thinking about the future for Tommy if Colin and I aren't around. The saddness overcomes me at times. And Monday it hit be like a freight train. I cried. And cried. Our feeding therapist was very sensitive as was all of the Center staff.

Watching Tommy is like seeing a baby enjoy the world with pure joy. There is no competition. No milestones to achieve at certain dates. He is always happy, content, and loves to play with things that are soft. I say that because his smile keeps me going even on the saddest of days.

A friend at work shared this scripture with me: "So the last will be first, and the first will be last." Matthew 20: 16. In Heaven he will be first in line and all of us "so called perfect" folks will have to wait!

Tommy Adventures