Additional Needs
I don’t want the care. I need it.
by Sharon F
on 29th April, 2024
Snow Days
Whilst Social Media is going crazy with pics and videos of sledging and snowmen, we sometimes find ourselves in a very different world.
Getting out and about with Heidi (quad CP, trachi, gastrostomy, non-mobile, and the usual list of extras!) can be tricky at the best of times; there‘s no such thing as travelling light!
Wherever she goes she has a suction machine and catheters, feed pump, emergency trachi kit, medicines, then the usual change bag, toys etc. with her.
So, the idea of getting stuck anywhere is pretty daunting.
On Wednesday, the bad weather that had been forecast hit.
We had snow.
Everywhere looked pretty, but my practical head wasn’t so pleased.
I’m often somewhere in the middle between trying to live a “normal” life (I don’t really like that word but hopefully you know what I mean) and being mindful that Heidi does have complex needs and sometimes adjustments have to be made.
The snow however got me thinking all sorts of things; what if it comes down really quickly and we get stuck coming back from school?
Could I push the wheelchair up the hill and carry all the bags on my own?
Would anyone be about to help me?
What if the suction machine ran out of battery?
What if we have to stay over somewhere and I don’t have enough feed or medicine for her?
What if school think I’m an over-reacting Crazy Mama for keeping her at home?!
I was therefore most relieved when the text came through the following day to say that school was closed due to the extreme conditions.
Phew.
Decision made and I could stop debating all possible outcomes and worst-case scenarios.
Our snow day was however pretty uneventful.
In fact, it was pretty much like any other day at home.
It was far too cold and blustery to give Heidi a taste of the magic (cold weather can make her quite chesty, and I’m clearly a bit of a wimp), so instead we sat and looked out from the cosiness of the lounge.
I briefly felt sad that she wasn’t able to sense the excitement that a day off school should bring, but then it hit me that she is going to school (when weather permits).
That in itself is enough.
It’s something that at one time we didn’t think would be possible.
We didn’t think that the storm we experienced early on in Heidi’s life would pass.
We didn’t think that we would see sunshine again.
We didn’t think that we would ever laugh or smile.
We do. We do a lot.
So yes, being stuck in for a few days may not be ideal, but we’ll use that time to count our blessings.
Probably should do a bit of housework too…!
Hope you are all staying safe and warm!
