My mum came to stay this weekend. We always talk a lot about Small. She has, naturally, been with me all the way along our journey of discovery and fear, but I worry that we lost her sometime around acceptance. I worry that she sees Small too much as not quite a person, too much as a project to be managed… too much as a little boy who has stopped me (and Big, and the OH) living the life we were supposed to have.
I am so past this feeling, I think, for two reasons. One is, without doubt, respite. If we did not have this window in our lives this post would be different. But, every fortnight, off Small will go with his amazing carer, Pam (she’s not called Pam, but she could have been) and he has the most delightful two days with her, her husband and her two grown up boys. They all very clearly have a lot of affection for Small and he very clearly returns that. It’s a beautiful bond. In return our lives slow down. We’re able to sit, read books, take Big out to places that would be awkward with Small and we get to make meals that take longer than 20 minutes to prepare*. So when he returns, we have missed him, and I do miss him, and we’re ready to change gears again, refreshed, renewed.
But the second reason is bigger, more holistic than this. We are a family these three people and I and we do not make life worse for each other. We make life different. Imagine, if you will, that Small is not Small but Small is a regular boy, he’s 7 and looking like he’ll be a really good rugby player. We spend every Saturday watching him play the under 9’s at the local club, we take him to rugby camp over the holidays, we spend inordinate amounts of time going up and down the motorway as he gets older and tries out for semi-professional clubs. This amount of time and dedication devoted to one of our children would be oh-so-reasonable and not questioned. And yet, we spend time in clinics, out-patients, that are not close to where we live but 30, 100 miles away trying to find an answer to Small’s undiagnosed condition and, I can see it, people think this must make for a very hard life. It is merely different. It’s not one I’d have chosen (and, to be clear, I would never choose a freezing cold rugby field either!) but this is our life and we are happy to live it. And because it is something that has grown organically, not just happened overnight, this is How Life Is. And that’s ok with us.
One day, I’m hopeful, everyone else will get that too.