Guest blog from Emma

I was talking to Emma about a piece I was writing for Undiagnosed Day.

‘Does it mention me? You know, you always tell me how well I’m doing?’

I laughed, and told her she was coping well with the whole ‘Alex thing’ but that this piece was more about how not having a diagnosis could be both a good and a bad thing, so it didn’t really talk about any of us in great detail.

‘Well, could I do a bit for it?’

‘Yes, but I might just put it up separately, if that’s ok?’

So this is Emma’s guest blog:

‘My bit’ by Emma

Being the sister of an diagnosed(*) child can be a bit weird because when people stop and say to mum ‘Why isn’t he walking?’ it makes me feel uncomfortable because you’re just torn between saying ‘If he could walk, he would’, or feeling quite embarrassed because he can’t do the stuff you can do.

But a good thing is that you can play with them for longer, generally mess about with them for longer.

It’s true that diagnosed siblings will take up more of your parents attention space, but you have to remember that when your parents do spend time with you they’ll be doing stuff with you that they could never do with your sibling.

When your the sibling of a diagnosed child it can be stressful at times, but overall it’s brilliant.

I cried when I read this (and not just because I was desperate to correct her punctuation).  It’s interesting what she notices in our day to day life with Alex, what sits in her head.  But I’m glad she’s able to articulate how she feels so clearly, to write it all down.

Alex and Emma

Pg 1 and 2

Pg 3

*she means undiagnosed – here, and later on – but you knew that.

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12 Responses to Guest blog from Emma

  1. fisefton says:

    That is beautiful.

  2. Oh Emma it’s so great to hear from you. You are so important and I just bet Alex has a great time playing with you. My sister and brothers are still the most special people in the world to me. You were very brave to write this. Well done!

    Helen- I loved your piece in the Telegraph. It explains this journey so well. I’m looking forward to reading more here.

    Thought I’d share what my teenage son wrote about being a sibling. It was very interesting for me as a parent b/c not all of the facts were correct but they were still his truth. Hmmm..

    Thanks for sharing.


  3. Catherine says:

    That’s lovely! I just read your article in The Telegraph, and it brought me here. We have an undiagnosed daughter, Eliza, nearly 3, who has an older brother and younger sister who are ‘neurotypical!’ Your article echoed my experiences so well, thank you for sharing your story, it makes me realise that we are not alone and reminded me to join SWAN.

    • I’m so glad you liked Emma’s post – she’s really responded to people’s comments. I was a bit nervous about it to be honest :-)
      You’re definitely not alone, there are so many of us, so do please come and join Swan. They’re such a great bunch of people x

  4. Sister with a big heart. A touching essay =) #pocolo

  5. mrboosmum says:

    You know what, Emma and Sissyboo, could be very good friends (although she’s a bit younger). I just loved this.

  6. What a beautiful post from your daughter :) I hope to be able to show this to my niece one day. Elliott, my nephew, has a rare chromosome disorder (1 of only 3 in the world) and we belong to Unique. He is nearly 12 and his sister, Emily, almost 9. My daughter and Emily get on brilliantly. I know Emily feels lonely sometimes. Thank you so much for linking to PoCoLo, welcome on board and I hope to see you again this week xx

  7. Lucas James says:

    This is lovely – what a fab sister Emma is! Sounds like she has a very firm grip on what’s important and what’s not!
    Thank you for joining in with #SquarePeg link up, hope we’ll see you again next week!
    Take care

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