When James was first diagnosed with Duchenne, we were overwhelmed at how our lives would change. He had to take daily medication, we had to put him into early intervention sessions, we had to keep a close eye on him when he played, we had to be extra cautious whenever he came down with a cold, and we had to stretch/massage his legs and arms every night. We cried, wondering how we were going to not only cope with the increasing and demanding needs of a child with a chronic illness, but also for the loss of “normalcy” in our lives.
Each night, for more than 5 years, Julian has massaged and stretched James’s legs, without fail. At first, it was a bit of a battle to get James to lie there for so long. We had to turn it into a game so it would seem like something “fun”. However, now that James is older he gets out his iPad, puts on his headphones, and either listens to AC/DC or plays Angry Birds. And let me tell you, he can whip my arse in Angry Birds. This is our normal now, massage time every night. And we don’t think twice about doing it. It’s just part of our daily routine.
Change is hard. As with any child who is diagnosed with a chronic illness, there are always changes and compromises to be made. And it’s scary, going into such unknown territory. But whilst the day-to-day changes may seem overwhelming at first, they do become part of a family’s daily life, and life still goes on around those changes. Things may get harder as time goes by, but those small things that families worry about in the beginning become the things that they come to do without a second thought, as if on autopilot. I just hope the larger changes that are occurring around us at present also become easier to “cope with” as time goes by.