Probably the first ‘special’ equipment we acquired was her feed pump – which pumps the formula from a 500ml sachet through a long tube and into her stomach.
I hated it until I came up with the idea that I could use a cheap coat rack instead of an expensive IV stand to hang her food – which I thought was terribly clever – and Vegemite discovered she could decorate the coat rack with stickers and Christmas lights.
After that, it became less hated, to the extent that I hardly think about it.
The feed pump was followed by the suction machine… And then the standing frame and the supportive seating – in several different varieties, some better than others - and the bath chair, which never got much use, apart from in the paddling pool in summer.
She outgrew her ‘regular’ stroller and after a number of trials, we found a special needs stroller that worked well for her and provided all the right support. I love it and hate it in equal measure and the fear that she is swiftly outgrowing it because she has such long legs can keep me awake at night.
After the special needs stroller came the hospital bed. She needed a bed where the head could be raised to help with her reflux, and I needed a bed I could raise and lower in order to protect my back.
The gait trainer came next, but wasn’t as successful as the standing frame in encouraging her to bear weight through her legs. Several standing frames have come and gone in recent years as Miss Z grows and her needs change.
And we now have a special needs car seat.
Yesterday, her latest piece of ‘special’ equipment arrived: a raised bath. It is a pretty simple design - a small bathtub on a frame with casters – but it means the world to me. Miss Z loves her baths. Bath time is her favourite part of the day, and the one time when you are guaranteed a smile, and usually a song too. Baths have also been the best way to calm her when she is upset, after a seizure for instance, and they also help to loosen the secretions on her chest, enabling her to breathe better.
But most importantly, they make her happy, which is why I’ve spent a long time debating, discussing and brainstorming with various occupational therapists and physiotherapists about how I can continue Miss Z’s baths as she gets bigger, and therefore harder to lift in and out of the bathtub.
The easy solution is a bath chair, which can be wheeled into the shower, but she doesn’t like showers, she likes baths.
And it was very important to me to give her this one thing that she enjoys.
The solution was amazingly simple, but until I met the right phsyio, I didn’t know they even existed – at least not in a form that fit in our bathroom.
Yesterday the raised bathtub arrived and today we tried it out for the first time. It will take some getting used to (by the end the bathroom floor was flooded and I was soaking wet, red faced and frustrated), but Miss Z’s huge smile as she splashed around made it worthwhile.
It was a small – and in the end, surprisingly simply resolved – battle, but it is still a win. We have a bathing solution that doesn’t involve massive renovations to our bathroom…. yet.
All this equipment is important to Miss Z’s quality of life. Not everything works for Miss Z, but the things that do are immediately incorporated into our daily life and as Miss Z gets bigger, they become essentials. We wouldn’t be able to get around without the stroller and car seat, she wouldn’t be able to sit or stand without the seating and standing frame. This equipment quite literally changes her life, and we are so grateful to have it.
However, with the joy of new equipment also comes sadness.
The seemingly never-ending need for expensive, complicated, ‘special’ equipment is a constant reminder of what Miss Z can’t do. It is a reminder that she needs additional help with even the most basic activities in life and will never enjoy the independence and mobility that her sister takes for granted. And the equipment also medicalises her (if that is even a word) – it makes her everyday routine feel very institutionalized when I have to rely so heavily on specialist equipment.
And it keeps her at arms length from the rest of the world.
Her stroller is supportive and stable, but it also makes it difficult for her to interact closely with other children and more or less impossible to reach out to touch something in front of her. Her standing frame keeps her comfortable when she is standing upright, but with a large base, it also prevents her from getting too close to anything or anyone. And her new bath, which enables her to continue to safely take a bath, also means that baths with her sister will stop – a ritual we’ve had more or less since Miss Z was born.
I am so grateful to have the equipment we do – it transforms Miss Z’s world and gives her opportunities that would otherwise be closed to her.
But with the joy that these opportunities bring, there is always sadness that we need them at all.