Our second house in Maine was an old Victorian parsonage. Built in 1865 the place suffered from neglect, yet had many redeeming qualities. Alice loved the main staircase, this house had two. From the front entry the stairs curved around one wall to the second floor landing and framed with a handsome banister and railings. The back stairs were in the kitchen and were so steep they more resembled a bookshelf. Alice loved both, so we bought the house.
At the time my hobby was house remodeling and this place was a challenge. Before it was over I knew every square inch of the house and almost every board and joist, especially the floor joists in the basement that I hit my head on a few times. Some I gave names I can't print here. The work was rewarding, but often things weren't square, nothing was standard and lots of repairs didn't go the way I planned, but that was part of the adventure. Matthew liked to watch me work and many times he would follow me upstairs into the attic or down into the basement. He alternated between watching me and busying himself with my tools or a toy he would bring along. As he got older his legs seemed less stable, yet I liked having him with me and for the sake of time and safety I would carry him up or down the stairs. He was about four at the time and the word Duchenne was not yet in my vocabulary.
One afternoon as I worked in the basement I heard Matthew softly descending the very steep stairs. I always knew it was him as he led with his right foot, hesitated and then took another step. Without warning I heard him cry out and fall. I ran to him from where I was working. As I feared he hit the granite foundation with his forehead leaving a bruise and small cut. With tears welling up in his eyes he kept repeating "I'm OK daddy." I scooped him up in my arms and carried him into the kitchen to clean the wound and hug him tightly. Neither one of us was OK. Matthew hurt his head and his falling broke my heart. I still marvel how he was in so much pain and tried to reassure me he was fine. The child trying to avoid upsetting the adult.
The bond between children and their parents can be amazing. We love our children and would protect them from all harm. Our children also love us with all their strength and have an early desire to protect us from things they consider bad. As Matthew and his brother Patrick have gotten older Alice and I talk more about DMD more openly. There is always an uneasiness as we delve more deeply into the subject, but we believe in honesty and trust our sons to tell us when they need a break. More recently there are times when we talk about an older guy who has DMD or the boys read something about DMD they consider inaccurate and we are in uncharted waters. Despite being on pins and needles we've learned how much our sons really know about the long term prognosis. This gets me wondering how long they've known and how long they've been "protecting us".
I speak with parents who hate even saying the word "Duchenne" in front of their sons. I understand how this makes them uncomfortable, but we took a different road. From the beginning we have been honest with our sons about what they have and answered their questions honestly and to their satisfaction as age appropriately as we could. We've found our sons are actually better able to handle this than most of our family and some of our friends. Finding the right balance isn't always easy, but it is worth the effort. One evening Alice and I talked about someone who was in their thirties who had DMD. Patrick was listening and commented saying that was a long time for someone who had DMD. We agreed. Another time he told us he had read about people who have DMD only living until they were twenty. "That's just wrong" he told us. Both he and Matthew are hopeful that research will help them live better lives. I think they are doing a great job on their own.
It would be nice to go back to the simpler days when a bump was their biggest problem. Our life is different and so is my perspective. I owe some of that to my sons.