Sometimes people say the daftest things. Sometimes it makes me mad. Like when people ask me what’s wrong with Boo or was he born like that (‘like that’?!), or make fun of disabled people in front of me. (All three of these things were said to me in the space of a three minute conversation just this weekend and it took every fibre of my being not to get cross.)
As time passes, though, I’ve learned to be a bit more discriminating. I’ve learned not to let everything get to me. I’ve learned not to rise to every opportunity to fight Boo’s corner. There are too many battles to fight and my energies are best spent helping him where he needs it most. And I know that some people aren’t malicious; they are just ill-informed.
But it still hurts. That they see something in Boo or in our lives that we just don’t recognise.
The soundtrack of inane or inappropriate comments when we’re out and about is sometimes deafening. Sometimes it’s hard to hear anything else. And then at other times, just when you least expect it, someone says something so unexpectedly and wonderfully incisive that you realise your lives aren’t invisible to other people. That they can see what we can.
Yesterday morning I had to make a regular trip to the chemist to pick up Boo’s seizure meds and his inhalers (a legacy of contracting RSV in hospital 18 months ago whilst hospitalised for his epilepsy). It’s a small, local chemist, with two pharmacists who share the working week between them and a shop assistant.
They have seen us from the early days, post-NICU discharge when he was on domperidone, ranitidine and dalavit (the premmie cocktail of choice). As his dosages reduced they congratulated us and then they sympathised through awkward facial expressions when they increased again and were accompanied by high-dose steroids. They knew something was very wrong with Boo. When he was put on Epilim along with the steroids, they knew it was worse still and I had to tell them he had infantile spasms. They looked frightened for us.
From then on, I tried to make my visits to the chemist’s as in and out as possible. It wasn’t that they said anything that made me feel uncomfortable. It was just that they looked at Boo and me with an expression of profound pity. Compassionate pity. Kind pity. But pity, nonetheless.
Pity… You know, in many ways I find that harder to deal with pity than even the most stupid or offensive comments.
But yesterday when I went in I was too distracted by the excitable banter between Sissyboo and her little brother to notice the pharmacist’s facial expressions. Boo was squealing and yelling ‘more’ to encourage his sister’s mad antics and crazy conversation.
The pharmacist asked if Sissyboo was Boo’s sister. It had never occurred to me that I had never taken her with me to get his meds before, but I guess I hadn’t. I explained she was. And he just looked at them for about 30 seconds before saying to me: ‘That is a very special bond they have. You know what, they will both feel happy and loved all their lives with a bond like that between them.’
It’s something we think about a lot: What will happen to Boo when we die? It’s not that we’re morbid. You just think about this stuff when you have kids, don’t you, and I reckon you think about it about 100 times a day more when one or more of your children has additional needs. Sissyboo shouldn’t have to look after Boo if he needs that level of care when he’s grown up and we can’t, but it makes us both feel a whole lot better knowing how much they adore each other. That hopefully, he can rely on her. Things can change a lot, of course, in the span of childhood. Their relationship will change. We know that. But we just can’t see it souring. They are each other’s best friends and advocates. It is a bond like I have never seen between two siblings before, even with my own sister, with whom I am very close.
And for a few moments yesterday, what we see was clearly visible to someone else. Someone who looked at Boo and didn’t see a disabled child, but a much-loved and extremely loving happy child and sibling.
And it felt good.