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Living with Rett Syndrome: Playing Mary

Beth Johnsson

photo 6 300x225 Living with Rett Syndrome: Playing MaryToday, a quiet and simple note came home in Hannah’s school bag. ‘We have chosen Hannah to be Mary in our Christmas play. Please can you send in a blue dress.’ Now, this is probably a special moment for any mum of a little girl, but when that little girl cannot talk, hasn’t played with or been able to hold a baby doll for three years, and has so far not managed to walk independently onto the stage in any school show,  the moment is quite literally breathtaking.

I think I actually gasped and held my breath before erupting into whoops and applause. Hannah was undoubtedly chuffed, whether because she understood the reason behind the celebration or just because she likes nothing better than a good old-fashioned riot, it didn’t really matter. She was happy, we were happy, she was happy, we were happy. It’s a vicious circle, only with a sunnier disposition.

The regular reader is waiting for the ‘ but’, the other side of the coin to this moment of celebration. I wish I could say there isn’t one, but of course this is living with Rett Syndrome, and double-edged swords are part of the package. A few weeks ago I wrote about the parents’ evening which ended in tears, having realised that Hannah’s time at her wonderful school is coming to an end.

We are a few weeks down the road and the process of finding a new school and constructing a transition is underway. Practically, it is being dealt with, but emotionally, it is not one of those things, so far, which time makes easier. The school’s harvest festival show two weeks ago was brilliant and painful (I sat in the front row and battled unsuccessfully with unanticipated tears the entire way through). I know that Hannah has been chosen to be Mary partly because they all know this is her last Christmas with them, her last chance to be centre stage, their way of showing how special she is to them. I also know that, if I struggled to hold it together during jolly renditions of ‘dingle dangle scarecrow’ with Hannah far left of the stage as one amongst a number of ‘farmers’, I have got no chance next week.

You see, I’m a sucker for Christmas anyway. Children and Christmas, in particular. Children singing Christmas carols gets me every time, and in the years since Hannah’s loss of speech, the effect is tenfold. The first time I actually properly sobbed in public was the Christmas concert at Hannah’s nursery in the December after she was diagnosed. The sound of 20 three-year-olds singing carols, and the resounding silence of my little girl standing amongst them, was too much. The fact that my two sons are now able to join the throng, belting out ‘Jingle Bells’ with the excited enthusiasm of children who understand ‘Christmas’, is both magical and painful, like everything else.

So, take the basic ingredients of Christmas and children, add the knowledge that my little girl has not ever sung a song, the fear that she may never, the hope that she might, the pride in everything she is despite the obstacles in her way, the joy of seeing how loved and valued she is, the anguish at knowing she has to say goodbye, the guilt that I feel about taking her away, the uncertainty I have over whether it is the right thing to do, the frustration that I cannot even explain to her what is happening and why, the happiness that she has had three beautiful years, and the totally selfish sorrow I have that I, too, have to part with this wonderful place, and the result is, well, a bit of a mess. A happy, proud, devastated mess. A mess that will be me, next Thursday.

I have no idea what Hannah as Mary will look like; I suspect the baby Jesus may suffer a little (that’s kind of the point thought, right?!) and the occasional lob, bite, poke in the eye will probably be written into the script. Since I’m told that aliens also feature in the play, I doubt that a crowd-diving baby Jesus will surprise or offend anyone! What I do know is that Hannah as Mary will look absolutely perfect to me, and that I will be there, front row, clapping and sobbing both inside and out, bursting with pride, thankful for my little girl and praying for her miracle. After all, that’s kind of the point too.

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