25.02.16

The ‘Life in our bubble’ blog series gives a parents view of life with a disabled child:

I am pleased to report that generally things are going well with The Move and our darling daughter is settling well in her new home. We call it her “other home” when we speak to her about it. As long as we are around that’s what it will be. We aren’t contemplating letting go yet, it’s too soon, there’s so much for everybody to learn and things will evolve in their own time.  We have been hanging out there with her, separately and together, getting to know the staff, the place, the vibe, watching her put her stamp on things, her personality oozing out and drawing everyone in. All this is still a work in progress of course and it’s early days. Ask me next month for stories and I’ll have some no doubt.

The huge space in our lives seems to be filling seamlessly, much to our surprise. This is due in part to unforeseen responsibilities we have had to take on recently, but also because we have both been working a ridiculous amount.  It’s so much easier to carry on without interruption, to see something through, isn’t it? We can do that now. Do we need to be so busy though, are we simply making up for lost time? Or filling the space where our anxieties would otherwise lie? By all accounts our daughter is sleeping better than she has done in a long time. We have yet to sleep through.

It’s the first weekend without our girl. Her first weekend without us. It’a cold and windy. Raining. A pyjama day for me. But what about her? She is due to go trampolining but isn’t up to it. She is building up to something, we’ve seen it coming. It’s time to be especially vigilant. So will she have wall-to-wall DVDs all day? Will someone read her stories and make her laugh? Will she get the TLC we know she needs? We are assured that we will be called if needed, she is in good hands. We have to trust them.

I decide it’s time to go through the ever increasing pile of papers that have sprung up all over the house in recent months. Time to sort, file, discard. I need to make some sense of a life that has so often been identified by care plans, risk assessments, consultant updates and hospital letters, learning goals, activity sheets, charts of this, that and the other, appointment schedules, logs. Amongst the award letters and factsheets I find photos, birthday cards, lines copied from a poem.

I look at our daughter’s most precious moments, aims and achievements, the so-called failures, trials and errors, those attempts at clarity in such uncharted waters, reminders of the obstacles impeding her progress and challenges she faces daily. I marvel at the distance she has travelled through sheer determination and force of character. I see names on these papers of people who know parts of her but rarely get the whole picture, some who have lingered and others long gone. I find a photo of her smiling at us.

I reduce the pile to a minimum. There will always be more to add. And I go for a hot bath.

View the previous life in our bubble post.

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