It happens to all parents of disabled children. The questions and comments from other people who don’t quite know how to interact with us now. I haven’t really had any negative comments yet but there have been a few times when I’ve been a bit stumped as to how to answer.
I think the hardest one has been someone saying (before I actually told them about MPS) ‘At least it’s not xxx, because that would be really bad.’ In those sort of situations mostly I feel sorry for whoever has said it, as I tell them a little more and they realise that Hunter Syndrome is not something to wish on any child.
Below are three of the most common things I get told and also the answer I should give if I wasn’t feeling shy/uncomfortable/too tired at the time!
I’m probably asking too many questions
To be honest, I really don’t mind. Despite being an introvert, I’ve actually always been quite open about things. The fact that I blog about our life with Hunter Syndrome shows that I don’t mind putting things out there. Mind you, the same won’t be true for everyone with a special needs child. Take your cue from who you’re talking to and as long as you’re coming from a place of genuine interest and caring, I’m sure you’ll be forgiven a lot.
It’s not as bad as what you’re dealing with
Never say this to me. Your problems are your problems, whatever they are, and as a friend I want to be there for you, just as I hope that you would be there for me. OK, if you need a good whinge about how your child is not yet fluent in Russian despite three month’s of private tutoring I might not be the best person to talk to. But that’s not very likely from my friends anyway. So please, let’s leave my issues aside for the moment, and tell me what’s bothering you. To be honest, it will probably do me some good to think about others.
I don’t know how you do it
Um…that’s a simple one to answer. I do it because I have to. Sometimes it is easy. We have our routines for treatment and trips to Manchester. He watches far more TV than I would really like. Sometimes it is more difficult. When he wakes up and starts shouting just as I want to go to sleep myself I may mutter a few choice words. When we’re out and he disrupts some other children’s game my heart sinks as I know they might not understand. When he runs off in the opposite direction to where we just parked the buggy I have to make a snap decision as to which one to temporarily abandon. (The buggy usually wins that toss-up: whoever steals it is more likely to get some stinky nappies than anything valuable.)
It’s not the life I would have chosen. But it’s our life. He is hard work, yes, but he is also undeniably, unbearably cute. I couldn’t choose not to love him, therefore I do it because I have no other choice. You would too!