Our life is a funny old game. If I had had my tea leaves done or had looked deep into a crystal ball I still never would have believed how things would turn out. Sometimes I can’t even believe it and we live it loud and clear each and every day!
I’ve got the Twitches. The Twitches is what happens to me on new equipment day.
New equipment day is just that. A day when another new piece of technology or a disability aid arrives into our home. Many people see these things as practical godsends. Many people literally see an object. I don’t. I know a lot of my friends with disabled children don’t. For these things aren’t just ‘things’ – don’t get me wrong, they make practical life and communication easier, yet for me they are huge-smack-in-your-face constant reminders of how our family and our life is so very very different and a million miles away from the one we hoped for. They’re given to us to help….they do help…yet they also resonate a very strong message of the difference of our existence now.
I love my home. I love my house and everyone who helped make a building feel like a happy, blessed and beautiful environment. Four walls never got so incredible as the day we were blessed with DIYSOS. One of the turnaround times in my life that was. Amazing.
As for many, our home is a sanctuary, but particularly somewhere where we can get a little bit of that thing people call normality.
Yet even the boundaries of our home blur with hospital..the majority of our visitors who drink from my teacups are therapists. The majority of people who ring my landline are Drs. I have 111 on speed dial. There was a time when paramedics used to pop in..
As much as I adore and love each one of them, the majority of people who share my car park spaces are the carers who help me get the twins ready for the day or ready for sleep at night. (I use sleep in the loosest sense of the word. We are yet to achieve proficiency in this skill). People who I employ get to share in the pure confusion of my bed head appearance as I open the door to them at 7am. People I employ get to see the beauty of my collection of primark pyjamas as they arrive for the night shift.
My bathroom cabinet is no longer filled with the delights of Molton Brown potions and lotions…..but is filled with the production of GlaxoSmithKline and other pharmaceutical company stuff….. Syrups and liquids on prescription for the twins which I collect fortnightly so much so that the pharmacist and I are on first name terms.
There’s a ramp up to my front door. My doors are wider. I’m used to discussions about wheelchair turning circles. I’d give anything for that discussion to be about how fast the twins RAN in circles…..
We could be used as a disability equipment showroom. Like many of the lovely houses in our neighbourhood that resemble beautiful show homes from NEXT or John Lewis catalogues, we could quite easily be subjects of a clinical equipment brochure.
Big postural supportive seating chairs, postural electric beds, wheelchairs, walking frames, bath seats, toilet frames, shower chairs, sleep systems, night time braces, alarms, standing frames, specialised travel seats, splints, adapted cutlery, adapted drinking cups, syringes. In the wardrobes – special shoes, leg splints, gaiters, wheelchair ponchos. In my handbag, always a rogue pack of hearing aid batteries or an appt letter I’ve stuffed in there on the promise I will file it away later. Of an evening, if I have done the drugs round and got them settled in time for Eastenders, I rest my cuppa on the tray of a large functional reclining disability chair where I would much rather a beautiful Perspex coffee table.
Tomorrow, we get ANOTHER piece of equipment to add to the collection. (I used to collect Care Bears when I was little – they were far easier on the eye than all this stuff we collect now and frankly a lot more fluffy).
Tomorrow, Zachary gets his first wheelchair.
I’m not going to go into the emotive conversations I could have here about the fact I will, from tomorrow, have TWO sons in wheelchairs – that’s a whole different blog and actually I need to process this concept a bit first….
But the prospect has given me the Twitches. New equipment day Twitches. Symbolic of ‘how I would wave a magic wand and take away all their challenges and make it better’ Twitches. The Twitches visited me when I started my Collection, and in most recent times when Reuben got his new wheelchair head rest assessment. The head rest that makes him look like a Formula One driver. The Twitches will probably visit me in my dreams tonight..the dreams when I live in a gorgeous beautiful world where Reuben runs freely in his sports day at school and Zachary can hear pins drop. I know for sure they will visit me tomorrow as we meet another new face of another therapist who will hand over another thing for my Collection.
But as we always do, this house aims to thrive on what they can do and not what they can’t. It’s these Twitches that jeopardise my ability to sustain those thoughts and give me the wobbles. The wobbles that give you a gut wrenching heart hurting yearn for it just to be different and ones which make you have a bloody good cry. The ones where to be honest, I’m jealous of all the people out there enjoying their Easter Holidays with their children in the sunshine when we are in our house struggling to do the same.
But…..the Twitches don’t last long. The fact Zachary will probably love his new wheels helps the Twitches to do one. And the Collection can actually been seen so differently if you try hard enough. Reuben’s chair can be pumped up high enough Harry pretends he is actually in a space rocket flying to the moon. His wheelchair has Buzz Lightyear wheels. The Hoist is like a magic fairground ride. Zachary’s prescription shoes make him run like Sonic.
At the moment the twins are laughing their heads off at You’ve Been Framed on the tele, and how could the Twitches ever be the victors when you hear laughs like theirs. However much equipment and stuff surrounds us, the hearts of these children are far bigger than the Collection will ever be. They reign the Twitches in.
As I get up to get the next drugs round done, stubbing my toe on the spoke of the wheelchair on the way, I read a few of the shabby chic signs that friends and family have bought me over the last few years. Ones that adorn my walls amongst the smiley photographs of the boys, with quotes like ‘if life gives you lemons make lemonade’… (And my fabulous one ‘I love all things that glitter and sparkle ;0) )
The one that’s probably the most poignant is the one that welcomes Reuben into his room each night. The one that I know is what we live by, and is far more important than the fears and the Twitches.
The one that says ‘Twinkle twinkle little star, do you know how loved you are…?’