Ethans new wheels

Summertime is here! And what a Summer so far!


Many thanks to the junior and leaving cert students for their sacrifice to the sun Gods for giving us this weather ; look lads, even as far back as the ‘intercert’ we all sacrificed to the sun Gods, don’t worry next year it’ll be a new group sacrificing.

The smell of freshly cut grass, the burning charcoal on the grill and the planes darting through the cloudless sky all remind us that Summer is indeed here.

Summer; a time when the beach beckons and kids run wild. Ain’t it a good time of the year?

This will be our first Summer using a wheelchair to help Ethan get about.

Ethan got his very first wheelchair two weeks ago. It shouldn’t have been a big deal to us, but it was. We knew he would need one eventually, we just didn’t know eventually would come so fast.

He loves the chair, mainly because his little legs are unable to walk for more than ten minutes at a time. He has become quite unsteady on his feet and that in itself is a worry. The chair takes that worry away,we know he is safe when he’s in his chair.

He still walks with us but stops suddenly and makes his way into his chair, we now cannot go anywhere without his chair.

And yes, we knew all this would happen…eventually.

Eventually seems to have caught up to us quicker this year than any other year.

We have been using Ethans adaptive buggy for the last few months while we waited for his wheelchair; we knew Ethan was losing the ability to walk and no matter how we discussed this we never said it aloud, instead we’d say things like “Ethan is more comfortable in the buggy, imagine how a fitted wheelchair will make him feel, it’ll be great for him” And that is the truth, it is great for him, for us however it is a stark reminder of what Hunter Syndrome is doing to our once whirlwind boy.

My two week experience with his wheelchair has been an eye opener.

I have only ventured into our own community thus far.

People stare at wheelchairs. They don’t hold doors open when you are entering your local pharmacy or leaving it, they will wait for the staff to come out from behind the counter to help you. Kids are told ‘come away’ while the parents move their kiddies away from the chair, making every possible attempt not to look at me or Ethan. And no, the parents were not moving so we could pass more easily, they moved their kids who were staring from the grass as we passed by on the path. I ask you, is this normal behaviour? I honestly don’t know!

I have noticed that regardless of the empty car parking spaces in our local shopping area, people park their cars and vans up on the kerb of the path. They especially like parking where that dip is on the path and those irrelevant double yellow lines are. I guess it is a lot to ask of them to park in the spaces provided and walk the less than 2 minute stroll over to the shop door.

Twice in two weeks I’ve pushed Ethan and his chair over to that dip in the high path while a car has been blocking most of that dip. I’ve stared right back at those sitting in the car watching me and Ethan. I even told one of them “That is not a parking space” while she just rolled her eyes.

Other times I have had to hike Ethan up onto the kerb while a van parked across the dip which was designed for wheelchairs and buggies.

Is it just me but are these people real? I mean , are they for real…do people think this is ok?

I am nervous with the wheelchair and trying my hardest to learn how to control it and lift it (correctly) when I’ve no option;basically when there is no dip in the path. There is a knack in pushing a wheelchair, up and down steps especially and I can tell you it’s not easy, especially when the temperatures are in the high 20s. I have never sweated so much in my life!

I am building myself up to going out into the ‘real’ public and pushing Ethan and his chair around our beautiful city of the tribes but having pushed him around our little cocoon of an estate, I am more nervous about going out with him in his chair. Are my feelings normal? I don’t know.

Time will tell.

Yes,Summer is upon us we will be going to the beach, the promenade and cruising through our city because it is that, it is our city too, chair or no chair.

This Summer, Autumn, Winter and Spring please use the parking spaces provided for you and your car as those dips are not designed for you…the double yellow line is a good indicator of this.


This was originally published on Familyfriendlyhq

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