There are times I watch my boys from a distance and try to imagine what they are thinking. I realize they face challenges we can only imagine, yet I seek access to their world without being intrusive. I have to believe they have similar dreams and desires and try to catch glimpses by observing them when they are just being themselves.
Today I had one of those opportunities. Patrick had just gotten off the bus and I saw him at the end of the driveway. I peered out the window wondering why he didn't come up the ramp and into the house. After the bus left Patrick went to the mailbox and pulled out the envelopes going out and I now knew he could see the mail truck making its way to our house. He then backed into the driveway and traded paper and a brief verbal exchange with the woman who delivers our mail. What a perfectly benign activity, just normal and yet very revealing. No one asked him to take the mail out and pass it to the driver and it isn't his "chore". Still, like all kids he gets an idea and just acts on it...most of the time it is good!
Boys who have DMD are looking for the same opportunities made available to their unaffected friends. A little independence, friends and someone who is meant just for them. I wonder how this can happen for a boy or young man whose body doesn't allow them the simple pleasure of scratching their own face or dressing independently. Is that as large an impediment as those around him who may not see how they can stifle access to the outside world? I hope I am not falling into a trap of building a system or network that is an obstacle to my sons being able to express themselves and do the things they want. How does this happen? In some cases we are so concerned about the long term prognosis that we want to create a cocoon that keeps out all the negatives, yet forget it also prevents many wonderful opportunities as well.
We start early by cursing braces and steroids and then rue the coming of a wheelchair. We see other boys who are using a wheelchair, yet do we see the smiling joking individual or only the bulky battery powered device? Alice and I got excellent advice from a family we know early enough to see that by the time Matthew and Patrick would need a chair they had fought long enough trying to take so few steps and falling so many times that the chair would give them back some of the freedom they had lost. No, it isn't perfect, yet it is tolerable and watching the boys keep up with a group of friends is great. Other times we may avoid families who have older boys or young men who have DMD because we don't want to face the future or fear our sons will not be able to handle this well. These are missed opportunities in so many ways. We have friends who have sons in their twenties and older. And yes, some have passed away, but to see these delicate individuals interacting with their families has shown us how important and appreciated each person is to the families who love them. Some young men are very serious and for others life is an excuse to joke, cut up and have fun.
My sons no longer walk and have difficulty visiting with friends, but these are activities they need and desperately cling to when they have the opportunity. I guess Alice is a bit of a reverse "soccer mom". Instead of taking the boys to games she goes and gets the boys' friends to visit at our home. It takes a bit of organizing, but it is worth it. This spring Matthew hosted an end of the year party for his high school chorus where a dozen teenagers overran our home for an evening. The girls outnumbered the boys (I never was this lucky in school!) and they watched movies, ate junk food and talked for hours. Patrick constantly has buddies visit or they meet at the movies. Again, like the wheelchair it isn't perfect, but it is how we try to ensure our sons have some social life.
This summer we told Matthew he wasn't hanging around the house all day or using the computer and playing video games. When you have limited physical ability getting a job is next to impossible. I e-mailed a woman I know who works for Senator Susan Collins and asked if there was anything Matthew could do in a local office. She made a call and got him an interview. The office manager put together a few ideas and while Matthew isn't being paid, he has an opportunity to interact with young people his age and older and has responsibilities at the office. He will continue helping out as long as he is able being in the office two days each week (So we are hoping she will be reelected in November!). Sure it would be nice if he got a paycheck like his peers, but this is how it is. So once Matthew gets a date for Homecoming I'll have to foot the bill for that as well.
Matthew is a sophomore in high school and we are beginning to discuss college. Five years ago we wouldn't have thought it was going to happen. Matthew's grades are very good, yet we don't know what his physical ability will be like in two to three years. One way or the other if he is able, Matthew will go to college and so will Patrick. It will take additional concessions and we will have challenges to overcome, but I expect we can get through it as others with DMD have. It is just a chance to be more like their peers and worth the effort we put into it.
So, when Patrick came in the house he passed me the mail and headed for the dining room to finish his homework before calling a friend. I looked through the mail. Mostly bills, so I put them on the counter for later. Those can wait. Matthew needs his laptop and Patrick wants a snack and that comes first.