Dear Newish Member of the Team

Welcome.

It is good to have someone new on board. Thank you for choosing to come alongside families like ours. I am sure you must be good at your job - you wouldn't have been chosen to come and work here otherwise.

I know that a large part of your job is supporting families - my family and others - who have children with complex health needs. I'd like to explore what is meant by support. Whether or not you are doing this intentionally, your interpretation of this comes across as aggressive pity (a combination I didn't know existed until we met you!). I don't need pity - none of us need pity. I love this life, I love my girls and they are the light of my life, they bring meaning to my day and joy to my soul.

That doesn't mean it's always easy. Of course it isn't! But could you please wait to see how I am feeling on any particular day before jumping in with a sideways sympathetic head tilt and telling me I must be so tired? In fact, could you please not tilt your head sideways in a sympathetic "you're so brave" smile at all? It's very annoying, and it gives me a crick in my neck when I try to meet your eyes.

I'm not brave, and I'm not special.

My girls are, although I don't tend to make a habit of telling them that very much either.

Whilst we're talking about the girls though, both girls have pretty decent understanding. They don't need to hear me being told how difficult they must make my life, how hard it must be to care for them, how awful it must be to have to deal with the things their disabilities throw at me. They hear that all day long from bus drivers, from doctors at hospital appointments, from random strangers in the street. They really don't need to hear that again when we turn up at support groups and social events. And they certainly don't need to be made to feel that they are a burden or a torment. Why should they have to hear their mother being pitied for parenting them? No one pities them for having me as a mother; in fact when people do talk to them, they tell them how lucky their are to have me. Have you ever met a child who considers themselves lucky to have the parents they have?

Oh - and small side note whilst we're on the topic of mothers; I am the girls' Mum. I am the "real" parent - the one who puts them to bed and gets up to them in the night and kisses them in the morning and packs lunch. If you must inquire about their other parents the term "biological", "birth" "first" or "other" would be better than "real" or "natural". I am neither unreal nor unnatural. Or at least, I like to think I'm not.

The trouble with your pity and your constant sympathy, whether or not you've stopped to think about if that's actually what I need at that moment in time, is that it leaves me nowhere to go but into relentlessly cheerful mode. I don't like being relentlessly cheerful - it's exhausting. And I'm often running low on sleep as it is. I don't mention that in order for you to tell me how awful that must be, or to marvel at how wonderful I am to cope so amazingly well, I mention it as a factor in how angry I might get with you next time our paths cross.

Please relax. Forget your preconceptions about how you might feel if you were in my situation. Actually, forget how you have felt when you have been in my situation. Just sit back a minute, and see how I am doing myself. Most of the time, what I need from your service is practical help, supplies, advice, perhaps a pair of hands. What emotional support I do need I will usually get from my friends. Obviously, if I turn up in tears, you have my permission to be sympathetic! But please don't try to push my conversation into areas which might bring them on. It's not what I need and it's not what I like. This life is for living, and the vast majority of the time I like to get on with doing just that. And so do the girls.

I'm sure that once you have learnt how to do that we will get along just fine. Thanks for listening,
Tia