I’d love to know how everyone else goes about their holidays and what they get up to with the extra time.
Don’t get me wrong - I love that we get more time to spend together, and I also love not having to get up early enough to be fully ready and packed for school by 07:45 each day.
But wow it's hard!!
I have found myself several times recently, telling people that I wish I could clone myself!
My poor mum broke her knee over the weekend, it was actually quite gory and very worrying. Like any grown-up daughter, I immediately wanted to be there. I want to be there now.
Helping make meals, helping with chores, generally keeping her company whilst she's relatively immobile. But it hasn't been as easy as I'd expect.
I rearranged our orthotics appointment for the second time, had to cancel a medicine trial that required us to be in the hospital, and generally abandoned all jobs.
I don't care about missing those things, the important thing is that my mum is okay.
But it makes me sad that because my child has such complex needs and such a busy life that I can't always just drop everything.
It's not the mum breaking her knee thing though, I mean about any unexpected thing that happens in life.
I feel that I can't afford to get ill ever. I feel like when it's school holidays you somehow have to double your capacity to get things done.
When trying to help, people say things like "well, jobs can wait"
But actually, a lot of our jobs as SN parents can't wait.
I can't just not change dirty bedding (daily job), I can't not clean syringes and draw medicines, I can't not spend my time placing orders for feeding supplies, booking appointments for wheelchair adjustments, booking shower chair services, planning for our next check up at a far away hospital, filling out forms for grants we need and so on. You get the gist.
It's full on. All of the time. It is unrelenting.
I do it because I have to. And because I care. But do I think my work load is too much for one person?
The holidays for us generally start out quite well. I throw myself into it full pelt, determined that we make lots of great memories and that I keep her busy.
I want to be able to tell the school about all of the lovely days out we had.
But usually part way through the first week, the burn out starts to set in. I start to get behind on dishes, washing, I get a bit lazier and clumsier.
I become more reliant on YouTube. I start to falter in my planning and start to cancel on people because I'm having a wobble physically and emotionally.
It feels like an internal mental battle.
Part of me going "come on, you got this. She needs you, and you want to have fun don't you? Forget the chores" but then the other side of me is crying out "slow down woman, you are only one person, there is only so much you can do and you can't give 100%, 100% of the time."
During term time I am just about coping and keeping up. There are still nights of no sleep, of medical intervention, of heavy lifting and awkward dressing.
But the difference is I can slow down a bit in the day as I catch up on essential jobs.
Today is a school day and already I've struggled hugely to get motivated.
Yesterday was quite a full-on day for me and my family and we also got a terrible nights sleep!
By midday today I forced myself to the shops, walked the dog, emailed a nurse about PEG ends, did some clothes washing, oh and broke our slow cooker pot (oops).
Normally by now, I would have done way more than that, but today it just couldn't happen.
This time next week those jobs will still be there.
But thrown into the mix will be my amazing but also very expectant and demanding daughter!
You never know which Amy you will get from day to day. Some days she is happy to accept that mummy needs to get things done, and she's happy to go to the pharmacy and shops.
Other days no. She wants my 110% attention.
Sadly there is no independent play for Amy. She needs me there all of the time to help choose toys and to help her operate them.
We have a great time doing it but I can't do it for 10 hours a day!!
Recently she's started to really enjoy using her goto seat on the floor of her bedroom as she can reach out for all of her toys instead of just eye pointing (as seen in the picture!)
So I turn to indoor shopping centres, or wheelchair friendly park trips... but those things are tiring, and without getting too political and angry about it - places simply do not have the facilities to change children like ours.
Some do, but often those places are further from home and therefore involve further planning, packing, travelling, and anxiety.
An easy option that I wish worked would be the cinema. But she hates it! We have tried live shows too with little success.
I am hoping as she gets older she starts to expand on what interests her.
One thing she recently learned to love was gardening. I never in a million years would have expected it. At weekends we often go to garden centres and her great auntie joins us in smelling nice plants and looking at pretty flowers.
For Mother's Day, her and daddy had a lovely time planting some flowers for me.
She also made a secret garden at school this week and when she was showing it to me she somehow managed to uproot some pansies and launch them and soil all across the room. It was so funny.
I think this holiday I will have to try and pace myself.
I will have to focus on only jobs I HAVE to do, I guess sometimes, some things can wait.
I will need to lower my expectations of myself - it's okay to not be perfect all of the time.
I will have to be more patient with my daughter and with myself - she gets frustrated and deserves more of my time.
I need to make sure I don't overplan, because epilepsy and illness don't care for my plans.
I need to accept that part of Amy's neurological status, that there will be uncontrolled emotions, and crying, and seizures. I can't always fix what's wrong, I just need to be there.
I definitely would like a zoo trip. She enjoyed it last time, and one of our local(ish) zoos has amazing facilities.
There is also this amazing place near us called Reubens's Retreat and they run events for families like ours, this week Amy is going to a music therapy group with her respite carers.
I am very excited for her (and also planning to rest up for the weeks ahead!).
I am also very excited that Amy's cousins are visiting from London and she hasn't seen them since she was tiny.
So we have a lot to look forward to, and I need to keep reminding myself of this and to keep positive.
I don't want to spend a lot of my time wasting time to get to bed time because I'm tired, I want to enjoy life with my family in spite of the extra challenges thrown our way and make memories.