Two thirds of our household currently use a wheelchair.

Given that there are only three residents in Paradise, several things are easily deduced:

1.     We are an even stranger household than usual
   (which is saying something!)
2.     One of us is extremely busy.
3.     Two of us are not.
4.     Leaving the house takes courage and planning.
5.     As does breakfast.
6.     And lunch.
7.     And dinner.
8.     And everything, actually.
9.     Favourite Wife is earning her keep.
10.    Favourite Wife needs a break.
    (Just so long as it’s not a leg that she breaks!)

Little One broke her leg. She came a cropper from her scooter at Vacation Care, poor girl. It’s quite a small fracture apparently, but enough to need plaster for the next few weeks; and a wheelchair too. We gave crutches a try, but they baffled her completely.

On the up side; if you have to use a wheelchair there’s no better home than ours! We’ve got the lot: a selection of chairs, an accessible bathroom (a godsend), gadgets galore, and a wealth of experience. The down side, despite all our fabulous equipment, is bizarre. Take Sunday church for example: We have a special vehicle with a lowered floor, ramp and so forth; but it’s designed for only one wheelchair, and there’s not much room even for a collapsible second. So, Favourite Wife first gets Little One out of the car and into the push chair, takes her into church, hops her into a seat, then leaves her there (with quick prayer – she’s not the sort of kid you leave alone for long) while she brings the wheelchair back out to the car and repeats the whole routine with me. Leaving church is the same in reverse, and I won’t bother to describe the logistics of getting us all in and out of the front door at home!

I’m smiling, but there’s nothing very funny about all this; especially for my Best Girl. For her, although she’d never say so, this is the stuff of nightmares. We were to have gone away for some R&R by ourselves this weekend; probably a quick trip up the mountains, or a couple of days wandering along the rivers and valleys where autumn leaves are brilliantly on show. But sadly the respite carers who look after our eleven year old every month won’t accept her in a wheelchair. The respite house is purpose built for all manner of special needs, so their reasons are more complex than you might think.  The issue revolved around another client booked to stay at the same time, a young fellow who has previously targeted slower moving children such as those in wheelchairs. Crutches would be no better we were told. Without being quick enough on her feet to keep out of his reach the risk of harm is too high, and they cannot allow her into care.

I was initially taken aback by this news. I admit that my immediate reaction was defensive, inwardly questioning the fairness of our family’s needs being put second to those of a young man who puts our girl at risk. But my wife’s years spent working in Special Education have taught me to understand the dynamics. In the classroom the welfare and safety of students and staff depends on continual assessments just like this. In fact, when I broke the disappointing news my wife’s first response was that the other family would need the respite more than us; and I’m sure that’s true. We’ve seen families and marriages break apart, and single parents’ health collapse under the pressure of parenting a disabled child.

I relate this story because it’s a tiny window into the complex and ever compounding world of disability. Few problems are easily solved, and there is often a ‘knock-on’ effect where the solution to one problem leads straight to an intricate string of associated challenges that will be quite foreign to the ‘normal’ world. This is why the cure can be worse than the condition; and why some awful situations go on and on unchanged; and why well meaning attempts to help become quickly frustrated.

Earlier today we three were deeply engaged in the musical chairs I described above, and our parental frustrations with the whole deal evidently washed over onto the child in question. “Your wife”, she growled at me through fiercely clenched teeth, jabbing my torso with a diminutive eleven year old finger to underline each word, “Your   wife   never   listens   to   me!”

She doesn’t know how true that is, except that it’s the world at large that turns a deaf ear; not my little girl’s mum. Each one of us comprehends so little about the unique, intricate, fearful problems that we each face; disabled or not. Perhaps that’s because we know, deep down, that once we understand – really, profoundly understand – we will have to get involved; and the cost might be too high. And so, instead, we celebrate all that is safe and simple and bright. We celebrate celebrity, because it’s dark outside.

Fortunately, wonderfully, I’m sure my little family will come through to calmer waters once again. The amazing respite people have already set for us another (longer!) break; we are blessed in many ways, and never without help.  If only that were true for many more that we know.

Rejoice!