My daughter Eva has Rett Syndrome; a rare neurological disorder that in her case, left her locked in a body that would not work for her from the age of 9 months. I went from being a photographer to being a mum to being a rudimentary therapist, advocate and ranter. This blog is here to share ideas, thoughts, therapies, recipes, advice and sometimes have a rant. or two.

Friday, August 21, 2015


This time 8 years ago...

It's that time of the year again.  I tell Eva stories about her birth and her first few days of life and she promptly falls asleep.   It's like our very own comedy routine.  I get mushy, she yawns and falls asleep.

I have had a teary few days.  I can't disregard that it's partly hormonal (I love that I even know that - that's what happens when you 'go natural') but it's also partly because she's been glum the last few days.  Her friend at school has the same birthdate as her and invited all her friends to her birthday but not Eva.  Hard knocks.  She explained that her mum said she couldn't invite Eva because of her allergies.  Yep, in 2015 allergies are still worthy of fear.  Eva is harbouring some disappointment over it all, as am I,  but on the other hand these are the blessings of going to a mainstream school.  She's going to have situations like this again I'm sure.  We've had a few talks about it and I think she's feeling better.  Then this afternoon one of her posse, A, asked me when Eva was having a party (she decided against the disco party she wanted after finding out all her friends were going to the other girls' party) and I said I didn't think she would.  He said "hmm ok. I think I'll go buy Eva a present tomorrow and give it to her on Monday."  He's such a lovely boy and has been such a great friend to Eva.  That alone is worthy of feeling #blessed.

Finding presents for Eva does get harder every year.  What do you buy someone who can't use their hands and can't physically move things.  It's tricky.  This year I found her a pair of ridiculously sparkly shoes, a dress and a book of inspiring quotes.  I also found a few craft things that she can do with a lot of assistance. Making buttons and making little embroidered necklaces  She has requested to go shopping for her present with us so we will see what happens then!

The other thing she requested (and when I say request I mean we give Eva options on a whiteboard and she chooses) was that I tidy her room for her.  The apple fell far from the tree there - it's not my natural state!  So today I tidied her room and the look on her face when she saw it was just beautiful - so happy! It's easy to forget that she has desires and needs that might be very different from what we expect.  I love discovering who she is and what she likes - it takes such a long time and so much patience to get to it but it's so worth it.

1 comment:

  1. Yes, it's hard on any child when they get left out of the party gang. Has happened to us all! But I think Eva's birthday afternoon tea and family dinner, plus the huge figure 8 and massive sunflower helium balloons, were the real icing on the cake/s, which by the way were delicious!