Sunny days , hazy rays….don’t you just love it?
Today was one of those ‘Spring is in the air days’. I could smell it…the freshly cut grass…the salty sea weed…charcoal burning on the grill…with the promise of Summer around the corner.
Summer…this Summer Ethan turns 13,which terrifies me beyond words.
“Ahh a teenager!”, you’d be forgiven for assuming that is what terrifies me.
Time terrifies me.
How quickly it passes.
I try my best to take time each day to appreciate the little things and the big things in my everyday life. I don’t say this lightly, I literally mean, each day, I take time to remember a certain aspect of my day, I try my best to photograph it. I need to engrave it in my brain. I need to be able to pull it out whenever I may need it. Every day, I ensure I take photographs, mainly of Ethan. I take video footage too but that, that is something I am unsure I’ll ever be able to watch…but I’d rather have it stored away than not have it at all.
Ethan is 13 in two months time. This day, 7 years ago, we were told he had Hunter Syndrome.
Every year, at his yearly tests, we call it his ‘M.O.T’(a test your car is put through to make sure it is road worthy), we are reminded by our doctors, nurses, therapists, specialists that : Hunter Syndrome is a fatal condition. Hunter Syndrome will take Ethan from us. Hunter Syndrome will not allow for adulthood. Hunter Syndrome will rip our hearts out, leaving our little family broken forever.
Every year, at his M.O.T, I am in awe of Ethan. He is poked, prodded, hooked up and scanned more times than I ever knew was possible…he still laughs, he still curses at them, he still hits out, he is still as fucking unco-operative as he was 7 years ago!
Yes, that brings a smile to my face…”By the time Ethan reaches 12, he will more than likely be unable to walk,have few words, may be peg fed and be extremely placid, he will no longer be the ‘live-wire’, that we see here today”…those are the words a specialist said to us 7 years ago.
Since his 12th birthday, we’ve been given a new sprinkle of reality “Hunter Syndrome will take Ethan, but he is doing well…considering he has the severe form. He looks good. Sounds good. And, well, ERT, is definitely slowing the progression of Hunters.But, you do know,a simple chest infection can have a huge impact on his quality of life,especially as he ages.”
YES I FUCKING KNOW, I scream…(in my head of course). I know the specialists can’t give us hope, they are there to ensure we fully understand Hunter Syndrome, that we don’t go into shock when Hunters starts taking more rapidly from Ethan. But come on…I know, I know without a doubt, I’m going to crumble…I’m afraid already that he is loosing his speech, his swallow, his ability to walk…
All them thoughts…I lock away. Lock away until…until a day like toady…Spring is in the air full of promises of a Summer…