There is a thing in my house.
Strictly speaking, it is things plural. They seem to be arriving by the truck load on a weekly basis and they are lurking in my house bathroom, staring at me benevolently every time I go in. If I’m feeling cross and argumentative (me – mardy? pah!) I might even argue they are glaring at me malevolently but this would be a bit of a stretch.
Of course, the presence of the things may explain my sudden swerve of the family laundry basket, (rather than just pure laziness of course!) such is my desire to avoid the things. I have adopted the ostrich principle – if I cannot see the things, they do not exist and all is tickety boo. Except that is false logic on many counts, especially when the tribe are shouting that they have no clean school shirts or pants. Meh.
The thing about the things is they cannot be avoided. Their very presence means they are the elephant in the room and we all know that elephants take up quite a lot of space….and they can make a lot of noise and mess too.
I have dealt with “the things” before and some of the things we have said goodbye to, I confess to feeling a tad nostalgic about since they reminded me that my children are growing up and gaining new skills. But now the things are leading us on a very different path and one that however much I read about, empathise with and nod sagely about, it’s one that I didn’t really expect to travel.
I know ultimately we will become friends with the things; that they will blend into the background unobtrusively and only every now and then will I have a little jolt that they inhabit our lives. In fact, they will make our lives, more specifically, the Minx’s life much, much easier. They “things” are not the stuff of nightmares but they are certainly not the “things” I day-dreamed of in a Mulberry style handbag kind of a way either. (Hint hubby, I have a birthday coming up in November and e-bay have some great second-hand ones if you need any clues….#just saying#)
So what are these “things” I am being so wordy about? Adaptions, aids, specifically contraptions and devices designed to help and support the Minx and us a family when she is fatigued and unable to do all the typical things that an almost 7-year-old can do.
Don’t get me wrong, I’m more than grateful that we have been offered these things, all free too (yes my US friends – FREE!!) and without any kind of fuss, fight or drama. Some might say, I’m all about THE DRAMA (an outrage, natch!) but when your occupational therapist reads the reports from the professionals and chats to you about every day life and the impact it has on pain, fatigue and energy levels and agrees without a murmur that various devices are needed, it’s a bit of kick in the head…with a stiletto.
By (almost) 7, most typical children are independently able to dress themselves, feed themselves, attend to toileting and bathing issues, albeit at times grudgingly but with minimal input from the wider family. They race up and down stairs with nary a care and their energy is boundless. In fact, having 3 older children, I have been that parent plenty of times, begging for mercy at the end of the day: “WHY won’t you got to bed you little
sh*ts, sweeties??” “What do you mean you are not tired?” #weeps#
But with the Minx the lines are blurred, the boundaries not so clear and every day is a draining juggle (for her and for us) of energy levels, a battle of wills, of do’s and don’t’s. Hubby and I are very clear that we do not want to disable her in any way and it’s hard to be the baddy and call time on a fun activity when she is enjoying herself, especially with her friends. Nonetheless, we are also mindful that we are the ones that pick up the pieces, (literally) that see her struggling with pain and wobbliness of limbs, lying on the floor crying because she’s just done too much, unable to eat/drink or sit up properly. So the “things” will help us in supporting that and I have no doubt that in just the same way as I initially felt about her wheelchair, we will learn to embrace the things presence and welcome the support they will give her for her fight in independence.
Minx already has a specialist supportive chair for eating at the table and we have adaptive cutlery, numerous beakers, straws and items to make eating and drinking generally as easy as possible. We have used all these for a while with great success.
Recently we have collected a little frame for the toilet that she can hold on to, to support herself and balance. She will require less assistance with getting on and off and my back will thank me for sure. We have some nifty bath steps to make climbing in and out easier as well as a bath-board so she can slide herself straight across. All more or less manageable in my brain processing since they are not too far removed from the bits and bobs you use with little ones for their independence.
Then it steps up a gear and there is a bath contraption/harness/thingy (technical terms obvs) for days when she is really weak and fatigued and can’t manage to get in/out unaided. At the moment, it’s sitting unceremoniously in my hall way waiting to be unpacked and assembled. It’s debatable how long it will take me to get my head round that one. I think I will look at it like lego building with my children – a necessary evil but sometimes productive and fun….especially if you follow the instructions straight out of the box.
As we will shortly be buying the house we moved into, we have been able to meet with the community Occupational Therapist (OT) to look at the stairs. Whilst at times, Minx can gambol up and down them like a goat, at other times, she is unable to even make it up the first step. When really fatigued, or in pain from hyper-mobility, it’s incredibly difficult to carry her because she is like a rag doll, unable to support herself or assist by wrapping her legs round you, or grip for support. Not only does this play havoc with my back and shoulders, I’m terrified of dropping her.
We also know that as she gets bigger it will only get harder if she continues to have episodic weakness or in the worse case scenario, progressively deteriorates – another unknown when living with an undiagnosed child – and since nothing about any of Amelia’s medical issues makes any sense, it is something we have to consider future proofing against.
Lying on the floor IS THE new vogue you know…..
We have been asked to consider both a stair lift and a through floor lift which would go directly into her bedroom since our ground floor accommodation at this point would require major alteration works to offer her a bedroom/bathroom facility at ground level. Plus since Amelia is on overnight feeds and monitering, it’s much easier for her to be closer to us if we need to get up in the night for her. Trust me it’s hellish enough dealing with the beeping (not a euphemism) pump without factoring stairs in a sleep deprived (or should that read depraved!) state into the equation!
I had vaguely got my head around the stair lift idea, largely because I am really struggling with lifting her but ridiculous as it sounds, the through floor lift somehow makes Minx seem “more” disabled. It’s like the time I first heard only of my children talking about his sister to a friend “she’s disabled you know.” It was gut punching.
One dictionary definition of the word disable reads thus:
to make unable or unfit; weaken or destroy the capability of;incapacitate
He was disabled by the accident.
to make legally incapable; disqualify.
We don’t think of the Minx like this at all.
We remember the words of consultant and Doctors telling us she might never walk, run, hold a pen and we look at how far she has come. We look at what she has achieved and continues to do, every day, amazing us with her beautiful drawings and feistiness, her jumping and climbing and we recognise how truly lucky and blessed both she and we are.
We are privileged to be part of the special needs community that celebrates children’s every achievement no matter how big or small and it is not benchmarked alongside their typical peers. Even so, we are acutely aware of feeling fraudulent within that community at times, knowing how incredibly capable Minx is alongside many of her special needs friends.
She even calls attention to herself at her mainstream school. The well-meaning shy smiles of sympathy as I wait with her wheelchair after school followed by the utter incredulity as she on many days bounds out and then leaps on the climbing frame waiting for her brother.
yes, yes nothing to see her……move along please…..feed the monkey at your own risk….
Of course we know the truth and I shouldn’t need or have to justify ourselves to anyone but it’s hard at times not to feel a bit of a lemon. Nonetheless, from bounding around one minute to being slumped and unable to get up another is a regular occurrence in this house and so we need to encourage Amelia’s abilities and achievements whilst balancing them with the mundane every day requirements such as bathing, toileting and eating. Any way that we are her parents can support her in doing that, be that with physiotherapy, strengthening exercises, or the use of specialist equipment, then that we will do.
As the OT explained to us, a through floor lift would ultimately offer Amelia even more independence since she would not have to wait for someone to strap her into the stair lift seat safely, accompany her up the stairs and help her disembark afterwards. She would be able to use her wheelchair straight into the lift and in her bedroom when needed or just use the lift by itself to go up and down when stairs are too tiring so it’s certainly something to think about when our wish at all costs is to encourage Minx to maintain and be proud of her independence.
I guess her independence is one of the greatest gifts we can give her. Nevermore so was this illustrated to me than in her sheer delight when we talked about the self-cleaning washer/dryer toilet option. She has very weak hands and her contractures of the joints in her arms, wrists and fingers means toileting issues are very difficult for her.
I won’t go into gory details but suffice to say, her little face when told about this amazing possible adaption and her incredulousness that she wouldn’t have to call anyone for assistance when she had “performed” was fabulous to behold. Her reaction when we told all the children last week that we had sold our house in Jersey said it all: “Yey mummy, now we can buy the new house and I can have a magic toilet!!”
So I’m off to wrangle with the “things” and re-arrange the bathroom. Knowing the Minx she will want to bling up the various bits of kit anyway and by thinking positively, drawing inspiration from her, I can stop regarding them as public enemy number one and start touting them to Home & Life style magazines as up-cycled life style adaptions. (Tongue firmly in cheek.)
#counting our blessings#
Until next time……..