03.02.16

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We’re extremely excited to introduce our regular parent blogger to the Renaissance family. The ‘Life in our bubble’ blog series gives a parents view of life with a disabled child.

Our daughter is having her first overnight stay in her new residential setting. She hasn’t officially left home yet but it’s imminent. You can imagine that this a nerve wracking time for us all, a complicated time, and a time that we always knew would have to come one day – but not yet.

We’ve prepared her room: it’s painted in the familiar colours of home and her bed is identical, made up with yesterday’s duvet cover and the zebra print cushion made by a special friend placed carefully on top. We’ve packed a favourite selection of books, DVDs and CDs and instructed the staff on food, drink and routines. We are only a telephone call away and have decided to go about our usual business and simply keep busy. It’s the only way.

I should tell you a little about us. We are the parents of a 22 year old young woman who is everything to us. We have led an intense life together all these years. She introduced us to the twilight world of interrupted nights, endless appointments, special needs this and complex needs that, a world that in many ways has become smaller as we have grown older together but which she has enriched for us with her love and laughter, her sunny spirit, her fight and fortitude. She is a resilient cookie, an inspiring teacher, a bright star and an adventurous fellow traveller on the longest roller coaster ride we could ever have imagined.

I get a call. We haven’t sent enough nighttime meds, there’s one short. Everything is fine but can one of us go over with that extra pill? I tell the friends I am out with that I have to leave right away (they are used to this), and rush home to collect the offending pill. I finally draw up outside the new house, ring the bell, but don’t go in. I don’t want our girl to know I’m there in case it confuses her. The support worker and I speak in hushed tones. It’s going well, she is snuggled on the sofa under a blanket watching a film, had a good dinner and is dressed for bed. I go back to the car, turn on the radio and drive home.

My partner is back from work. Despite intentions not to drink in the week, we open a bottle and drink to our beautiful daughter. We toast her health and to new beginnings. Somehow one glass is enough. We talk of our impressions of the staff. From very early on we learnt that it’s always the people that count first and foremost. If they are right, then everything else will generally follow. We wonder how our girl will be during the night, if she will sleep, if she will be well when she comes home. She is good at keeping it together when she is away from us, but usually goes bang when she gets home.

We don’t talk much more. We are exhausted. It’s been a long day. It’s been a long, hard few months. Well, years really. I’ll tell you more about them next time. By then who knows what will have happened and how we will feel? No doubt it will be good to talk.