I've always enjoyed photography, it really takes a lot of time to do correctly so I don't spend the time taking pictures as I once did when my children were younger. I picked up this hobby from my father and maybe because I dislike having my picture taken I stand behind the lens instead of in front (Fortunately few pictures of me as a teenager have survived!). In the dining room of our home I have one wall covered with framed pictures I've taken over the years. As you might guess most are of our children. I have favorite pictures of each of my children. For my daughter Rachel the one I took of her holding my niece is a very flattering photo and the two look so good together. Being our first child there are so many more of her, yet this picture is when she was about twelve. My favorite of Patrick is one of him about age four in shorts standing alone at camp. The scene is very innocent with him looking back from behind a life guard stand with a half serious and half impish expression. There are actually two I like most of Matthew. In the first he is probably three and he is sitting on the stairs of our first house and he is laughing. His expression is pure joy and happiness. The other picture is what Alice and I have nicknamed Matthew's "James Dean" picture. He is closer to five standing on the front porch of our second house with one arm on the railing with his head slightly tipped to the side looking into the camera very seriously. His hair is cut short and the photo was taken in the fall so the colors are richer, but it has the look and feel of a picture taken forty years ago. I don't think of myself as sentimental, so maybe through this hobby it is as close as I get. With these pictures I can look back at when things were more innocent for us as family and when things changed.
I remember when Matthew first started using a wheelchair and I wanted to take a family picture I would lift him up to stand when he was able or sit him next to his sister and brother. At the time I didn't want Matthew's chair in our pictures because we weren't used to it being a part of him, but either by necessity or acceptance I slowly began to take pictures first of Matthew and now Patrick in their wheelchairs. What is most impressive to me now is how our family's perspective has changed since Matthew stopped walking. I like to think we are at the point where we are able to look beyond the chair and see the person. The chair is no different than a belt or a pair of shoes, something he uses every day that is part of him while not being who he is. This becomes a way of life for us in the DMD world, but for so many it still is foreign.
Six years ago we visited Washington, DC for a family vacation. Patrick was still walking easily, but tired over time and on long distances. I still marvel at how much stronger he has been and at the time Alice and I were lulled in a sense he would walk forever. Matthew had his power chair and we didn't think of bringing a manual chair which would have been a good idea not only for Patrick to use, but also if Matthew's chair conked out we would have a back up. This meant that when Patrick became tired we would put him on his brother's lap. Actually he would stand on the foot plate and lean back on the edge of the seat most times making it less uncomfortable for Matthew. Over those next few days we traveled everywhere seeing the sights by the Metro and walking. The day before we returned to Maine we visited the National Zoo. There was a lot of walking at the zoo, so we took our time and rested often so Patrick wasn't completely wiped out. The day was very warm and by mid-afternoon we decided to go back to our hotel before dinner. The Metro stop is several blocks from the park and by that time Patrick had succumbed to fatigue and needed a lift. We put him on Matthew's lap. The entire walk back to the Metro people stared at the boys as they passed. I didn't realize how much it bothered Patrick until one particularly curious little boy kept staring at him as he walked along side. Without warning Patrick looked directly at the boy, made a face and stuck out his tongue. I think the boy wanted to croak and his family was entirely shocked pulling there son quickly away from our boys. Alice and I were a bit stunned as this was not Patrick's nature. I believe we told him he hadn't been polite, but didn't lecture him beyond that. In reality we were very pleased inside that he had the spunk to assert his displeasure and handled the situation HIS way. Later Alice told the story to her boss who commented that this was the type of situation where as a parent you might scold the child, take him out for ice cream and let him figure out the message. I won't forget that advice.
During holidays and while on vacation I still take a few pictures. Matthew and Patrick joined us in Washington, DC for this year's PPMD Advocacy Conference, so I have photos of them outside the Capitol and with the Members of Congress we met. I ran the Disney marathon and after crossing the finish I have pictures with my whole family that I cherish. Even though our lives have changed I want to hang on to these memories. Some will tell humorous stories and others are more serious. I don't want to forget any.