Please take note…

Having a child as profoundly disabled as Samuel does not mean we have a sad household.

When you tilt your head to one side and say ‘oh you are doing/coping so well’, that is incredibly patronising.

Why are we brave? because we’ve not given him up? We are not brave. Samuel is the one having to deal with daily multiple seizures. He is the brave one.

Telling me that you don’t think you could have a child with Samuel’s disabilities and medical needs is just weird. What are you actually saying?

Despite having a child like Samuel, we are still able to go out and about. We aren’t shut away at home all the time, we can and do regularly venture out into the big wide world.

Don’t feel sorry for us. Telling us that you were so sorry to hear about ‘what’s happened’ is just insulting.

Yes Samuel has a disabled parking badge. Yes he is only two. Get over it.

When you meet Samuel just take his hand and chat to him. Yes he may not look at you, or turn his head to you but still chat to him.

Don’t over analyse what you say to us. We don’t mind you telling us about what your little ones are doing or how they might be enjoying school. We don’t want the world to stop just because Samuel is disabled. The more you worry about what you say and try to avoid putting your foot in it, the more likely you are to say something quite stupid. Just be honest. Ask.

Saying to us, ‘oh it must all be such a worry for you’ is just annoying. Yes of course we are often worried, particularly when Samuel is going through a very rough patch. But his condition is constant. It doesn’t go away and then come back. To permanently ‘worry’ in the way you mean would tie us up in knots. We just take each day and enjoy it to the max. Like everyone should.

Actually we feel luckier than you. Why? Because Samuel is OUR son.

Why ‘must’ we be tired? As it goes, yes we are pretty cream crackered (knackered) a lot of the time, but how many parents of children aren’t?!

If you are curious about Samuel’s gastrostomy button you can just ask to look at it or ask how the pump works. Samuel doesn’t mind.

We are an incredibly happy little family. There is so much love in our house it’s bursting at the seams.

If your child asks why Samuel doesn’t talk, walk or play, don’t be embarrassed or hush them up. Explain to them that Samuel’s brain doesn’t work properly, so he can’t do clever things like they can. Read to them Your Friend Samuel.

Look past the special buggy, the lack of eye contact, the twitchy movements…look at the boy and tell me you don’t think he is the most beautiful little creature.

Yes Samuel will go to school.

When I tell you that Samuel is going to Julia’s House for the day, please don’t do the head tilt and sad expression thing. Yes it’s a hospice. Yes it looks after children at the end of their illness BUT it is also a nursery and youth club where children have lots of fun and adventures. It has just got the most qualified and superb staff around!

Having Samuel is a blessing. Yes I’d mend him if I could, but I’d never swap him. Not ever.


4 thoughts on “Please take note…

  1. Such a heartfelt and thought-provoking post. As someone who’s probably guilty of thinking you are so brave, etc, etc I can see how this is incredibly patronising too.
    He is a beautiful boy and you have every right to get frustrated with people treating him and you differently.
    Sending hugs x

  2. I so agree with your thoughts here As the grandma of an absolutely gorgeous 11month old baby boy with classic lissencephaly (in Australia) I was so glad to stumble onto your blog. Reading it is often like seeing mine and my daughter’s thoughts clarified and written down in a diary. Like Samuel, our darling boy is the light of our lives and the best snuggler around!

  3. Love this post (sorry I don’t get to read your blog as often as I used to these days) Although our circumstances are very different I too wish people would ‘just ask’ and not ignore what has happened.
    I would love to meet Samuel one day for some of his cuddles. Xx

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