*A repost from a couple of years ago. After recent events and my 13 year old being diagnosed w/ CF I felt it merited repeating.
From the time our troubles started, from the time we first realized there was just something ‘off’ about Riley. From the day We realized Angel’s torticollis was more than just a lazy neck and a heavy head. From the day we realized Angel’s cough was going for a month and showed no signs of letting up. From the first time Angel intentionally injured herself. From the first toys Riley lined up. Every day, every night, every in between we are aware. We notice when Angel runs out of steam before she’s played for ten minutes. We notice when Riley is starting to retreat into her shell. When we’re in danger of a meltdown of epic proportions. In danger of a night of a screaming, pouting, angry Riley.
Now when we look back on a past of frequent bouts of pneumonia. The five years of ‘asthma’ that we have been coping with. When every cough, sniffle and clogged, mucousy throat causes panic in Brandon. When we remember the first three years of his life, the issues he had that no doctor could diagnose for us. The tests he was put through to find the answers that never came – until 11 years later when I remembered. When I put the bouts of lung issues together with the bowel issues of youth and asked for the test that changed it all.
We notice it all.
We see it in the every day.
We see it in the little things.
Every action, every reaction.
Every thought, every moment searches for the newest sign.
Every memory now is seen through new lenses.
It’s a part of our lives. It is our every day.
Then you come along and say “But she looks just fine to me.” Or “She doesn’t seem autistic.” The newest, “I just can’t believe that HE has CF. I don’t believe it. Are they sure?” And of course the “She/He doesn’t act sick.”
I know you mean well. Really, I do.
But I hate it when you say that.
It’s like you’re belittling our every day.
The days at doctors and specialists. The hours calming and refocusing an over-stimulated child (longest meltdown stands at 36 hours). The hours a day hooked up to machines to live ‘normal’. The way I lay awake at night listening to labored breathing. Check temperatures every time we feel a little warm.
I know you don’t mean it this way. I know you just mean to say that despite their troubles they look healthy and happy. That unlike other children with special needs it’s not a visible/noticeable difference.
But I hate it.
Just say they’re beautiful. Say they have a great smile. They look like they’re having a blast.
Don’t contradict what we KNOW. Riley does have autism (no matter how mild). Angel does have CF, and Brandon also has it. These are not falsehoods. They are not bad nightmares we will wake up from. They are our truth.
It is our every day.
We try to live life beyond our labels – and we only succeed by accepting them and integrating what they mean into our lives – not by denying them.
Good for you for standing up for yourselves and your children. It is ridiculously frustrating when people, just because they don’t see it, think it’s not there. We had a similar situation with our daughter, so I’ve seen how hurtful and frustrating that can be.
Good post!