"It’ll get easier when she starts nursery."
"It’ll get easier when you get the mobility car."
"It’ll be easier when she's adjusted to her meds."
Do you ever feel like you're always waiting for things to get easier?
The school holidays have had me run ragged.
Trying to juggle managing the house in conjunction with a very bossy little 4-year-old around has proven harder this year than the previous.
She is much bigger now and with that her movements carry much more weight.
She's stronger and more determined for independence.
The problem with this battle for control is that unfortunately she is still unable to do anything for herself and relies on me (or whoever is with her) to act as her arms and legs for her.
I keep thinking about how things will be when she starts school this September.
Initially I was excited by the prospect of trying to return to work.
But then the reality sets in that it would have to be at a school as how else would I get care for her in the school holidays?
Even if I got a job in a school, what about when she has her jejunostomy surgery?
What if she gets unwell and I'm unable to attend work for a long time?
Am I just putting too much pressure on myself?
It would be so nice sometimes to just have a "normal" life sometimes... you know, the life I took for granted before.
The life where whatever problems you encounter during your shift you get to clock out and go home and rest and forget until the next shift.
Then I thought about how fast these 4 years have gone.
In some ways it goes really slow... but also flies by.
I look at pictures and I think of everything we've achieved together, everything she's overcome and all of the skills she has learned.
She isn't my baby anymore.
She is an actual little girl.
I worry about how she will cope in school for such a long day, with so much going on.
I worry how she will feel about going on the transport bus without, "mummy FM", singing to her and making her special car playlists.
I worry about if she thinks I've abandoned her and if she feels lonely.
The thing I worry most about is her going away from me for all that time and not knowing what's been happening.
I know you get a book telling you what they've been up to.
But I won't hear those words from her mouth.
I won't know how something made her feel or what she really loved most.
So, will it get easier?
I don't know.
People always joke that it's the mums and dads that suffer most and that actually the children adore their time in nursery or school.
But the reality of that does feel a little different in the special needs scenario.
For the last 4 years she has been my entire purpose.
Almost everything I do in life centres around providing great care for her and trying to ensure the best possible outcome and quality of life for her.
When she goes for all of those hours will I still have a purpose?
The school itself doesn't worry me.
I already love the staff, love the school, and it has more than enough facilities for her.
I know she will love hydrotherapy and rebound therapy.
Equally, I know she loves all the switch-controlled lights in the sensory room.
She even loves going to get her meds done by the school nurse because they show her a Doc McStuffins doll every time she goes in.
I have signed up to do some voluntary work where I get to help parents of newly diagnosed children.
This will be a couple of hours a week and I am hoping hard that I can make even a tiny difference to another family’s life like so many have done for us.
I have a few times felt an ache of grief in my heart as I peruse the supermarket, "back to school", aisles at all of the things we don't get to buy.
I half want to buy it all anyway just to say that I did, but I don't know.
The pencil cases, the lunch boxes, the drinks bottles, the bags.
I love it all.
For us lunch boxes are fancy medicine bottle containers, pens are for parent-school journal, and any bags you buy better fit several outfit changes, nappies and all of the many other accessories a child with complex needs requires daily.
Buying shoes that fit her splints was interesting.
When I asked other parents what they bought I got a whole series of frustrated replies.
Parents that have visited just about every shoe shop in their town and tried on copious amounts of shoes only to find them not wide enough, impossible to fasten, or just too comically big.
I think that maybe things don't get easier; they just change.
Often with that change comes a new perspective or maybe a time for sad reflection where you realise how things didn’t go as you originally expected.
I didn't want to fill out an IEP, or an EHC, I didn't even want to know what they were.
I wanted to remain blissfully ignorant as I walk with my child to the school gates, at a school near our house, not far away.
"Can, "random name" come for tea?" I want to hear.
"Please can I have one of those bags? 'Random name's' mummy bought her one," I expected to hear.
I wanted to get her home and ask about her day and her reply with an ignorant grunt... not through being nonverbal, but through being a typical child that is feeling tired and sassy after a long day at school.
Don't get me wrong.
I adore absolutely everything about my little girl.
But that doesn't mean that sometimes I wonder how things could have been.
My eyes have been opened to a whole different world of education and I am very grateful that it exists.
I know that in a few months’ time our routine will be in place and I will have a slightly better feel for what the future holds for all of us and how to continue navigating on the path we have been placed on.
In some ways things will improve from an appointment perspective - physio, speech and language, orthotics, and OT appointments will all happen in school, amongst various others.
Most pleasingly - the standing frame is going to live at school which will take away one huge battle we have each day at home!
Wishing the best of luck to all families of children starting nursery or school, or indeed just moving up a year.