I won’t be able to lift her forever.
I won’t be able to lift her much longer. That hurts.
Both physically, and emotionally.
I realise there will be those parents out there who are still able to carry their 16 year old up the stairs, and to you I take my hat off!
But that isn’t us.
Amy’s movement disorder is characterised by constant unpredictable and very strong movements.
Every transfer brings both danger and discomfort to both involved.
There is of course the added risk factor of the two feeding tubes that can’t wait to wrap themselves around any piece of furniture they can and cause emergency button changes.
It’s hard to explain really.
But having a non mobile child makes me want to be able to lift her forever.
I don’t want to rely on hoists.
The world doesn’t have enough hoists, and if I agree to hoist her from now on – it isolates us further from the outside world.
It’s a tough pill to swallow that she isn’t my baby anymore, she is a growing child.
She is only going to get bigger.
Holding her is a nice physical thing we can do.
With all of her harnesses and straps it’s hard to cuddle her when she’s in her chair.
I love the feeling of holding her close and carrying her; but it isn’t sustainable.
People gasp when I carry her – they can’t believe how she is almost as tall as me.
Their gasp is usually followed up by “oh my goodness, watch your back!”
Leaning over her bed to dress her each morning has me grunting and groaning like an angry walrus.
I especially struggle now to lift her from her mats on the floor and into her chair.
From about the age of 9 months I’d say it has been an almost constant onslaught of new equipment arriving, being measured for equipment, equipment being adjusted and so on.
Initially this was incredibly overwhelming.
Where would we keep all of this stuff? Will it ever calm down? Will we ever not need all of this stuff?
It is a huge learning curve.
I remember confiding in one of our specialists and saying “I really wish she could sit up unaided” and I think they misinterpreted me as their response was “oh don’t you worry, we’ll have her sitting!”
Naively I took this to mean that one day she would sit up unassisted and was thrilled.
I imagined our house without all of the seating, I pictured holding her without having to work with/fight against her stronge extension reflex and dystonic movements.
7 years on and the equipment is bigger than ever and continues to grow.
Gone are the days we could just lift her into a bucket swing, or leave a pram in the car and just carry her (along with various medical equi[ment!).
I can’t believe I used to complain she was heavy back then!
Holding her now can mean a black eye, a nose bleed or a fat lip.
Changing her nappy can mean kicks to the face.
She is getting so much stronger as she gets bigger; her limbs hold more weight than ever before.
It takes time to adjust to how things are likely to look in years to come.
It’s hard to imagine that her next growth spurt will render me unable to perform any transfer without hoisting.
My problem with hoisting is this.
Amy is like any other child in that she never likes to be in the same spot for long.
If she were mobile I am confident that she would be in every room, on every piece of furniture 100s of times a day.
She relies on us to perform those transfers and help her navigate her way around the world. Hoisting takes time!!
Every transfer will need to be warranted and carefully considered.
Some days she goes in her chair and within a couple of minutes is crying and shouting because she wants to lay on her mats on the floor to then want to be sat on your knee on the sofa.
Our day is often made up of many transfers.
She has an expectation that if she wants to be elsewhere, then she should be, imminently.
It must be so frustrating relying on someone else to anticipate what you’ll want next and I want to be able to be there all the time and keep up with the demands.
I was once told she isn’t safe to hoist alone.
When Phil is at work I will have no choice but to do these transfers by myself.
We have had several different sling assessments now to try and minimise the risk of her throwing herself out of the sling or causing one of us injury.
It surprises me that a small person can cause so much destruction!
Unfortunately, she doesn’t have any awareness of danger.
Dressing her involves rescuing her several times from the edge of the bed and manoeuvring her to safety.
She cannot be left alone on her mats on the floor, nor can she be left unattended in her chair as she does things like rip hair out or cut her face and neck.
So I anticipate that when I do eventually bite the bullet and begin to hoist, I should probably get round to working on my fitness levels and improve my reflexes!
I’ve received several warnings from other parents and also our team that I need to be careful.
To protect my back. To hoist every time, not just sometimes. They’re right.
They’re the ones who have had the slipped discs, the back problems, the inability to care for their child whilst they recover from injury.
I go to sleep many nights promising myself that tomorrow I will start hoisting her.
I also promise to eat better, drink more water, complain less and so on.
But it’s easier said than done in the cold light of day!
We are lucky enough to now have hoist tracking in two rooms in our house.
We have carers here that use it regularly. It requires two people really to do it – to control the hoist, and another to ensure Amy’s safety and prepare where she is being hoisted to.
Phil recently bought an inflatable bath.
We have a small wet room and miss baths dearly.
Yesterday Amy went in it for the first time. It was the longest she’s been calm and without music/iPads for a very long time.
She kept doing beaming smiles at us as if to say “this feels amazing, thank you”.
It was such a beautiful moment.
It then made me sad to realise how hard it had been to get her in and out of the bath and that this isn’t something we can feasibly do in years to come.
There is no prospect for hoist tracking in that room, and it’s too small for a portable hoist to fit in.
It’s bittersweet making these memories.
I sometimes wish we could just win the lottery and build a huge purpose built house with tracking and level access facilities in every room.
Because she isn’t going to change, but the environment around her needs to.
I’ll do it one day, I know I will.
I’ve been told that often parents like us often don’t start hoisting and continue to lift when they shouldn’t.
I know I’ll need to start breaking this habit to cut corners, as long term it won’t be good for any of us.