Sweet Sixteen

Maggie’s 16th birthday is on March 3. 16! That is hard for me to believe.


Birthdays for her are funny. They make me very happy and very sad. It makes me happy because we made it through another year. There were many years that I did not think she would survive. Today, though it is a lot of work to keep her this way, she is healthy and stable. It makes me sad because birthdays are a reminder of the day she was born and all the terror that came with it and the very very long road we have been on ever since.

The road one has to travel with a disabled child is different from the road with typical kids. They overlap or intersect at times, but generally it is a different path altogether.  This road is filled with amazing and lovely things that others never get to see, but it is full of rocks and potholes too. That’s ok; it’s just the way it is.

Birthdays are one of the places the two roads intersect. Everybody can relate to birthdays, but for parents like me, birthdays become a very public reminder of what will never be. She is 16. That is a milestone birthday. Kids have sweet 16 parties and get drivers licenses. Not Maggie.

And that’s ok because it’s just the way it is.

When Maggie was little the boys used to ask questions about what she would and would not be able to do when she got bigger. We just answered the questions as they arose. Not because we are such excellent parents with a developmental plan, but Rather, we did not really look forward very often and the questions from the boys allowed us to deal with the future from their perspective. I specifically recall Eddie’s concern that Maggie would never have to do chores. He offered to customize her wheelchair by attaching a broom to the bottom so she could sweep the floor

Once when Maggie was about two I stopped at a store on the way home. She was still in a car seat then. Generally, I would jump out of the car, get the stroller/wheelchair set up and then grab Maggie. For some reason that day, I grabbed Maggie first. Doing anything with her in my arms was impossible. She could not even hold her head up and it took both arms to secure her safely in your arms. I had Maggie in my arms and needed to put her down to open her stroller/wheelchair. I propped her up in the driver’s seat with one hand on her and the other hand opening the chair. As I fumbled with the equipment one handed, Tim, who was about 6 or 7 looked at Maggie in the driver’s seat and asked, “Mom, will Maggie ever be able to drive?”

Of course I knew the answer was no, but that was a loaded question. It was so far away and simply telling him so could be devastating. We tended to take things as they came and this was looking way way down the line. I looked at her in the driver’s seat and looked at him and, buying time, I said, well she is awfully short, don’t you think? He laughed and said, NO, I mean when she’s bigger

I just faced the music and said, “I don’t think so Tim.” He said why not?” as if it were a challenge to me. The boys knew Maggie was going to therapists and doctors several times a week and we were all waiting to see how far she would go. By that point, I was hoping she would someday be able to sit up on her own (did not happen) but the boys were still thinking she was going to be fine. Going for the easiest answer I said, well, she doesn’t see very well and California really does not want people driving vehicles if they cannot see where they are going. “He nodded and said, “Oh, right” That totally satisfied him, but I think he had a greater understanding after that. They have always been close and that day made them a little closer. I may have posted this picture of the two of them before, but here it is again. It is one of my favorites. He's watching tv and holding her as she sleeps.

Now Maggie is there. Maggie is of “driving” age. We are all the way down that road, she is who she is, and the boys are who they are. That’s just the way it is.

 And it’s all good.