Sometimes you have to take the good with the bad.
For the past 7 months, we have had a very special person come to our home every afternoon. His name is Luke and he is James’s respite carer.
He comes to our home every weekday, from 4-6pm, and spends time with James.
When Luke first started coming, James would wait at the door with his bike helmet, anxious to get outside and practice riding either his bike or his scooter. He would ride for a full hour, up and down our street, and Luke would race after him.
Seven months later, and James doesn’t do much riding. He tires too easily. This is because his Duchenne is taking hold quickly, much more quickly than before. So the bike, for the most part, sits in the garage. As does the scooter.
However, James and Luke still have so many other things they can do together. The play the Xbox Kinect, they listen to music on the iPad, and they talk about rugby, cricket, and James’s favourite subject – Harry Potter. James adores Luke, and lights up when he turns up each afternoon. I sometimes think Luke is the closest thing to a best friend James has outside of the family.
After their playtime, it’s time to get down to business. James needs daily massaging and stretching on his legs, to try and slow down the tightening that is occurring in his achilles tendon, and to break down the fat and connective tissue that his muscles have turned into. Every day, ever since his diagnosis, he has had an hour of massaging and stretching before bed. This is his “normal” these days.
Who knows how much longer James has until he goes off his feet for good? With his first wheelchair being delivered next month, I can see a month of emotional turmoil coming up as we start to navigate our way through his transition from ambulant to non-ambulant.
I think Luke will become even more important then, as he can hopefully help us ease James through this difficult time. With an Occupation Therapy study background, he will certainly have his work cut out for him.
And it’s on days like this that I am thankful we have him. Because even though I’d rather we weren’t in a situation where we need him, I am grateful that he makes an already difficult situation that little bit easier. On all of us. And especially on James. My poor little man who never deserved any of this.
I’m so sorry James.