I hate hospitals.
And yet I have certainly spent my fair share in them over the past 5 years. Not as much as some other parents, but certainly more than the average person.
Today, I spent most of my day either driving to Brisbane or sitting in a waiting room with my beautiful James. Obviously, with his Duchenne Muscular Dystrophy, he has to attend numerous medical and specialist appointments throughout the year. His appointment today was with the Neuromuscular Specialist at Brisbane’s Mater Hospital. Just a basic appointment to check his reflexes, height and weight, flexibility, and talk through any problems with me that he might be having.
Yes, just a basic appointment, but still one that takes my stress and fear levels up to the next level.
He’s only 7 (well, he’ll be 8 in May) and so far his appointments have been pretty standard, with non-worrying results. That will start to change soon, and that’s something that I am dreading. Because with a disease like Duchenne, the reality is that Cardiomyopathy will most likely set it, and his lungs will become less capable as the diaphragm begins to weaken. His bone density will drastically reduce and bone fractures will start to appear, often in his vertebrae. His flexibility will reduce, so much so that his feet will not be able to stay perpendicular to his legs and will turn down. He runs a high risk of cataracts or glaucoma and, in fact, he already has early signs of a cataract on his left eye.
And so, I attend each appointment full of fear. Fearful that today will be the day that we are given more bad news. Fearful that today will mark the day he “officially” starts deteriorating, even though it’s already obvious on a day-to-day basis. With a DEXA Bone Scan and a Cardiology appointment coming up in the next 3 months, I am not going to kid myself into thinking that everything will be okay. That day, where we receive more bad news, will come. And it will be sooner rather than later.
But just for today, everything is fine. Just for today. And so I can go on breathing easily for a few more months. Until the next appointment.