Respite…..should I say?

Perhaps it is wrong to admit it.
Perhaps I shouldn’t even say it.
The guilt eats me up inside every time I send her.
…but we need it. Right?

Ok. Here goes.
Deep breath…..
I had a lovely weekend whilst my girl was at respite.
There. Done. Said.

Why do I feel so bad even saying it?
Surely respite is there to help this happen?
I know what it is though.
It is because we are saying we don’t have a lovely time when my girl is with us.
That is COMPLETELY not what I am saying at all.
We have some amazing times as a family.
Sometimes though, we just can’t relax.

Going out with my girl in tow requires military precision.
Is it definately open? Does it have a website? Are there pictures to show my girl? Is it going to be busy? Is it wheelchair friendly? Are there toilets? Are there potential meltdown triggers? Is it safe if she bolts? Are there areas of open water?
There are a whole list of things to do before we even go.
Then whilst we are there:
Is she calm? Is she getting anxious? Is there somewhere quiet we can go for a break? Do they have the right food in the cafe as she refused a packed lunch? Are there toilets?
Not to mention the crowds:
Are they accepting? Will they understand my girls need to go first for everything? Will they understand her need to win everything? Will they understand that her rudeness and shouting are not bad behaviour? Will they stop and stare in a meltdown?
….the lists just go on and on.
This list doesn’t mean that we don’t have a lovely time when we go out as a family, what it does mean is that we are on full alert the whole time and so unable to shut off and relax.

So when my girl is away at respite we can just get up and go out.
My boy not needing the same preparation and input as my girl.
All the above takes so much out of my boy….
….but admittedly, we are controlled by my 10 year old girl.

Control.
That is what makes the days hard and the days out harder.
My girls inability to give anyone else control as her anxieties are unimaginable.
I know why, I see why, but as her anxities increase, so do mine. A vicious cycle.

So yes, I had a lovely weekend.
We walked through woods a wheelchair could not access.
We climbed over trees that are not featured on websites.
We ventured where leaves flashed and reflected the suns light and a meltdown would have definately developed.
We walked along streams and fast flowing waterfalls.
The guilt my girl could not, could never, enjoy the same tears me up inside.
I have to remember my boy.
My boy who exists in his sisters shadow.
My boy who has had a lovely weekend just being 8 again, exploring and making swords out of sticks.
Throwing stones into water, carving branches into dens.
Just being a boy, not a carer.

Special needs parenting tugs your heart strings in so many directions.
Sometimes it is hard to explain what emotion I am even feeling.
Sometimes I feel emotions when I don’t think I should be feeling it.
I am being so engulfed by exhaustion and guilt that enjoyment feels like the forbidden fruit.

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