Our wonkers, bonkers life

I wanted to call the post Wonky Bonky as this is a little pet name that I have for Gabe, but it sounds a little rude and I didn’t want to give anyone false hope. If you are disappointed then I think that you are in the wrong blog. I am really sorry but you’ll have to turn around, go back to google and start again (best of luck!).

Phew! This is about something all together different. The life that we have found ourselves living. The one we didn’t sign up for and on paper should be all doom and gloom; full of unimaginable horrors and hardships. Life with an undiagnosed disabled child. But more often than not, things around here are not morose (even if they are far from mundane). In fact life tends to be slightly bonkers, and sometimes it is even all a bit zonkers too.

Who are you calling bonkers?

When I was at school we used to go on a residential week to Colmendy in Wales. During the trip we would visit a place known as higgledy-piggledy land. It was basically a field with small hills across it where we could run free. Great fun but ever so easy to trip and land on your bum. Well that is the best way to describe life with Gabe. It is higgledy-piggledy land all year round. And as long as we navigate the harder bumps along the way we are doing just fine. In the earlier, darker years we couldn’t see where we were going and spent a lot of the time flat on our face (usually thumping the ground in frustration).

It probably helps that Gabe is crazy in a good way (aka wonkers bonkers). As I write, sat in my preferred working position on a cushion on the living room floor, he is trying to get his floppy little body into a crab position and shouting “oh no” every time he comes crashing back down. When I reach to tickle his tum, he giggles and does his version of legging it away (rocking back and forth on his side – going no where fast). Only to start his failed gymnastics once more. One thing for sure is that Gabe likes to do things his way. And they are funny little ways.

These silly hands – what do you want?

Let me give you another example (and this is one that seems to make my nine year old nephews crack up). Gabe has a bit of a love/hate relationship with his hands. They basically annoy him as they are weak and over sensitive. Sometimes he will just hold them in front of his face and yell at them. He likes to wriggle his fingers and looks at them in awe (this particular trait has sent nearly every consultant asking for his latest eye report). Anyway, we were in church one Sunday (being the good Catholics that we are) and I was holding Gabe up so he could look behind my shoulder. I heard one titter from a teenager behind and then another muffled guffaw. I didn’t give it a second thought until I turned to see my very own wonky bonky boy treating the whole of the congregation to a two finger salute and then with a grin changing it to the single version. This is not the first time he has done this. I often gaze fondly down on him when out shopping expecting to see my blond angel slumbering or drinking in his surroundings with a serene smile on his face, only to see him loftily holding two fingers up at the passing world.

It doesn’t take much to make this boy giggle either. He is my very own giggle ball – you know the ones that you throw at the wall and they vibrate with laughter. I don’t have to go to those lengths but a little blow in the face (I mean a puff of air in case you were still thinking about the wall throwing) can normally do the trick – that or even a cough can set him off. And once he starts it is infectious and five minutes can pass with him laughing at you laughing at him.

The biggest sign he is a bit bonkers is that his preferred position is upside down. In fact the most grudging of grudges can be halted by turning the boy the wrong way up. Flinging himself backwards is his hobby of choice and he is not fussy when he pursues it. Carrying him down stairs, walking across ice, cutting his hair – dangerous nah – a back flip he shall do (maybe he was a gymnast in a previous life).

It has been anecdotally said that children with hypotonia are generally good natured – that is probably because they can’t actually be bothered causing trouble. It is all too much effort. The best description I ever received of this crappy condition (that means his muscles don’t respond to his brain quickly enough) was to imagine I had just come in from a busy day shopping and had just kicked off my shoes and slumped on the sofa. The relief from that relaxation. Then to imagine someone calling me to go and answer the door. The effort of getting back off the sofa is the effort it takes my boy to do the most basic movement. We love it when Gabe is naughty (it is a mark of normality) but the best Gabe will manage will be rolling to the DVD player to knock the stray DVDs off the top. Or putting his hand in his bowl of food and smacking it on his head.

If we ignore the fact that Gabe is massively developmentally behind and we forget the days when he is ill, not eating, having a crisis, or acting strange (putting them all in a purple folder in the back of our mind) then life is not all that bad at all. We joke about things a lot and who cares if our humour is black. You either laugh or you cry. And we are beyond bored of crying so now we are choosing to laugh. If some days we can’t muster up the effort then we can always fling to the ground tickle on the ground the wiggliest, giggliest of giggle balls.

Gabe says: “Peace man!”

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