Recently I experienced first-hand what life is like with a daughter with Rett, day-to-day.
A long weekend away with my son and his eldest daughter with Rett Syndrome. She has hit puberty, and without her younger siblings, it was a chance to focus on her. It seemed like a long time ago when as our first grandchild, it was she and only she that was the centre of our world.
The first year and a half brought the utmost joy into our lives and she was the most spoilt, loved daughter and granddaughter. Her diagnosis and life since has brought us to a place where we tend to forget what life was like before the big R.
When we used to have her overnight and for long periods it was so easy under 4. But now as a pre-teen, carrying her and looking after her intimate care needs is beyond our capabilities.
Tube and oral feeding, holding her hand, talking and reading to her is about the limit of our capabilities. So spending 48 hours with her I witnessed the trials and difficulties of tending to a pubescent, daughter with multiple disabilities.
Firstly, a long car journey requires at least a few stops to extract wind from her feeding tube, and having a drink. Then there’s the personal care. Nowhere at a service station is there any place to put a young adult, to do this.
As a father with a daughter you can’t take her to the men’s public loo and lay her on a filthy floor. So the back seat of a car was the only option but far from the most dignified, especially as my son was outside of the car attempting to do this in the pouring rain.
On arrival, the hotel didn’t have a lift and asked us to remove her wheelchair from the reception area. My son had to carry her up two flights of stairs to our room. I then witnessed her having an enema on the bathroom floor.
I’ve been around in their home when this happens every day but could always go into another room. Not so in a hotel room with the bathroom door open. It’s a very hard thing to watch your 43-year-old son administer. It’s not exactly how I thought his life would pan out.
We showered her together and I suggested we dressed her straight into her pjs with track bottoms and a cardigan so that after dinner we could pop her into bed.
This was quickly dismissed as completely unacceptable as she is a young lady who like us all, should be ‘dressed’ for dinner. So another 15 minutes was spent dressing her. The tights being the hardest part.
Then she was carried down to reception and propped in a chair whilst her carriage was brought to us. After a lovely dinner during which she sat quite beautifully with her linen napkin tucked in.
We fed her orally and through the tube. I think most of the restaurant had not seen anything quite like it on a Saturday night out.
The weekend although with its difficulties was special and enjoyable. But a shock to me in how much longer everything takes now.
In comparison, there was a weekend recently when my disabled granddaughter was in the hands of a carer, which was spent completely differently with her younger siblings.
This was an experience that rarely happens as they are a family unit of 5. So there being 4 looks and tastes completely different. I saw what it looks like to be a regular family on an outing.
How unencumbered carefree and hassle less. Seeing my son and daughter in law enjoying their younger children and being able to watch without one eye on the older daughter and pushing a wheelchair.
So this is what life could have been, interesting. I’m sure they enjoyed this time not as regular parents, but as parents given a weekend off from their routine of lifting, carrying and folding wheelchairs in and out of vehicles several times a day.
The pleasure and relief on their faces, which I am sure they didn’t realise, was most noticeable.
It’s like two different lives can take place in the same family unit.
In my opinion, any parents of a Rett Syndrome daughter, deserve a Nobel prize for getting through a week or indeed a day. It’s exhausting to even watch.