There are a million articles out there in special-needs-parent-blogger-land about things to say or do for a parent of a child with special needs or who is medically fragile. But none of them cut to the real heart of what every parent of every child who is medically complex need: space.
No, not space to think, or relax, or to talk about their feelings – although those things are undoubtedly good. I mean actual space, you know, to put stuff. Because what no one tells you when your child is first diagnosed (or not actually diagnosed, as in our case) is you should prepare for their stuff to take over your house, starting immediately.
When we bought our house, we thought there was loads of space. I thought we would never fill the huge closet/storage space under the stairs and two-car garage, let alone the built-in wardrobes, laundry room (with closet), and other spaces. But we have. Mostly with Miss Z’s stuff.
It occurred to me today just how much storage space Miss Z requires when her nappy delivery arrived.
The Queensland government funds “continence aids” for children 5-years and older. A huge thank you to them for doing this – especially since once your child outgrows Huggies, the costs rise significantly. So well done them. Except, that the system for receiving continence aids means that you receive a bulk delivery of nappies every six months. That is a lot of nappies to arrive on your doorstep all at once. It looks like this:
We also have to order Miss Z’s formula from a supplier. Fortunately, we can choose to order whether we want a one or two months supply. Since we don’t have the space for 16 boxes of formula plus a box of giving sets plus a box of bottles to give her water, I can only order one month at a time, which isn’t the end of the world, but does make me feel like I’m forever on the phone ordering more…
We also receive Miss Z’s mic-key tube extensions, syringes and suction machine supplies once every two months. I’m responsible for organising this order, so at least that gives me a bit of control about what and when we receive them.
The formula and the medical supplies, along with the nappies, are stashed in the space under the stairs. They pretty much take up the whole cupboard and much of the storage space.
Since Miss Z spends most of her time upstairs, we keep smaller amounts of all these supplies upstairs, rather than running up and down stairs every time we need new formula or a syringe. They are stashed upstairs with her medications, the spare bottles of medication (because missing a dose of a seizure medication isn’t an option), the emergency seizure medication kit, the supplies for the G-J tube, Z’s diary, and other bits and pieces (because there are always lots of extra bits and pieces).
And that is just the medical supplies (well, most of them)! As she grows, Miss Z needs an increasing amount of equipment, too.
Some of it is small and follows her around every day – such as the suction machine and the feed pump. I recently picked up a new suction machine from the hospital. They proudly informed me that the new machines came with their own carrying bag. And then they presented me with a large, black bag that resembled a voluptuous old-school laptop bag. While it is well-intentioned, and I’m sure someone, somewhere will find a carrying bag useful, I’m never going to take the time to disassemble and pack the machine into its bag for transport. We might need it en route after all, and it is a lot easier to have it sitting beside her than trying to open a bag and attach the relevant bits when you’re trying to suction her in a car on the side of the road. Plus, the bag needs to be returned when I swap machines next year for servicing, which means I need to find a place to stash it – and where I’ll remember where it is a year from now.
Not all of Miss Z’s equipment is small, however. We have needed to start using a hoist to lift and transfer her in the playroom, where she spends most of her time (although truthfully, QB and I still just lift her ourselves most of the time, but at least we no longer have to worry about damaging the backs of Z’s support workers). The hoist is helpful, but it is huge. And there is nowhere to put it. At the moment, it also serves as a drying rack for laundry and if I forget to take off the sling, the cat uses it as a hammock.
We are also starting the process of modifying our upstairs bathroom to be accessible for Miss Z. For the past year, we’ve used a raised bathtub to bathe her, but that is becoming increasingly difficult as she gets bigger. An extra bathtub obviously takes up a bit of space. It’s a good thing it is on wheels, so it can be pushed back and forth, depending on if you need access to the bedroom door, sink or toilet…
The other big piece of equipment, Miss Z’s new wheelchair, lives in the new elevator. Handy how that works out! And so far, we’ve managed to avoid a standing frame or walker at home – instead arranging for her to use one at school, which we can borrow on the school holidays. However, if her progress with the walker continues, I suspect one of those will be on the list soon.
And I won’t even mention the garage. I have rather a lot of stuff stashed there – both current equipment and things we no longer use. QB is constantly after me to “do something” with it all. I’m currently in denial. Or hiding.
The point of this all is that Miss Z needs an awful lot of stuff to meet her daily needs. And that stuff takes up an awful lot of room.
So the next time you wonder what you can do for that parent of a child with special needs? Offer them closet space. Really, it’s what we need.