The boys are starting back at school on Thursday. In some ways I suspect we’ve been in a bit of denial… as I’ve only just ordered all their school supplies and books, and picked up their blazers from the dry-cleaner… that I dropped off 3 weeks ago!
I know we’ve had the whole of the holidays to get organised, but much has been recovering from 2017! I think when we stopped after Christmas, it all caught up with us and were too tired to do too much more than rest, then work started again.
There has also been quite a bit of anxiety for all of us with the lead up to school. Last year, Nat went to school for three days, then had a pain flare that ended up in a week in hospital and led to him being in a wheelchair for much of the year. While we’re pretty sure that’s not going to happen again, we can’t help but be anxious. In the back of my mind, ordering stationery and text books made school seem real. When it hadn’t been done, we could almost forget that school was on the horizon.
With school only a couple of days away, it was too late to put it off any longer! Thankfully, Officeworks has a fantastic service where I can just drop in their stationery lists and they pack it for me. We may not have the books for the first day back, but we do have enough of the basics to get them started for the year.
There’s only two more sleeps until school goes back.
I’m sure that once the boys are at school, life will settle down again. I’m looking forward to that.
This morning, we had appointment #3 for the week. This time it was with the Rehab specialist for Nat. We had seen her from time to time when we went for Nat’s physio appointments, but this was the first follow up since his last hospital stay.
We arrived at the hospital early, finding that most of the school traffic was clearer than it normally was in the morning! Usually, an early arrival doesn’t mean much, however this morning the doctor arrived at work just as we did, so we were able to see her at 9.15 instead of 9.30!
She was really pleased with Nat’s progress, especially the fact that he wasn’t using a wheelchair any more. She was amazed that his feet and toes were back to a normal colour and size. The last time she’d seen then they were purple and swollen. Every other time we had seen her, Nat was in socks and shoes.
He is average in height and weight for his age, and all his reflexes are good. We talked about how it wasn’t that long ago when his pain was too high to test his reflexes! Everything else was going well.
Our next follow up is in six months, giving him a good start at school and to see how he’s going. It also means we are still in the system in case we need support next year.
Today was also the last day of school for the year.
Zac had a lovely day, though his team lost the trivia competition due to too many questions about celebrities! On the drive home, we reflected on the year. He has had a great year at school and doesn’t regret changing schools at all. He is looking forward to Year 9 next year.
This afternoon I picked Zac up from school. He was bright and chirpy and happy. He had enjoyed school and had a good day.
Nothing special happened at school.
He had all the usual subjects, including ones he doesn’t particularly like.
There was no lunch order as they don’t have canteen on Tuesday.
It was just a normal day.
But Zac was happy and bouncy.
It’s been quite some time since he’s been like this. Usually school leaves him flat and tired. Generally life leaves him flat and tired, especially when there is worry and anxiety added on top of the usual ME/CFS symptoms.
This was such a boost to all of us. We have been living in a flat mood of worry for so long, having a spark of happiness was such a change. Such a lovely change.
We have been living with ME/CFS for over four years. An article I read shortly after his diagnosis said that most kids recover around the five year mark and I’ve held onto this hope that Zac will fit the mould of the “average” child with ME/CFS. Days like today give us hope that he will be returning to life as a teenager, a life like the other kids in his class.
May there be many more days like this,
Today is the start of a new school term. Zac went off happily enough, though still quite tired. We had run out of Hydralite bottles, so we stopped off for some Gatorade on the way to school.
We make sure that his lunch box contains a lot of high salt foods, such as chips, ham and cheese croissants (he doesn’t like sandwiches), and salted caramel popcorn for a treat.
Having all this helps get him through the day. He finds it hard sitting with his feet down all day as blood pooling is an issue. This is especially hard during a double period when he has to sit for the whole time.
We are still working out what strategies work for Zac and what strategies don’t work! The aim right now is getting him to school for the day. It’s also hard as many teachers are expecting him to do all the work his classmates do – when he’s only at school part time!
This year he is not doing a language or PE, but other than that, he’s doing most subjects. He also has Wednesdays as a rest/homework day. By the time he gets home from school, he’s usually too tired to concentrate much on any homework. This is also something we are working on.
So far, we have been living with ME/CFS for just over 4 years. I read an article that said the average time kids had it was 5 years… it’s something to be working towards and we have our fingers crossed.
One of the three projects Nat has chosen to do is one on Statistics. It’s something he’s always found interesting, and this gives him an opportunity to explore statistics and examine the stats for something. We are looking at doing something with statistics to do with cubing. Nat hasn’t quite decided what aspect to explore yet, but that will come.
My dad, Nat’s Opa, also enjoys statistics. He has bought a basic statistics book and they have been having a good time working through this book and getting back to basics about stats. Some of this is work Nat’s already done at school, and then they are going further.
When I came home from work today, this is the scene that greeted me:
They were deep in discussion about statistics, something to do with n-1.
I suspect one thing they are enjoying about this is finding out about all the things that they don’t cover in school, that they have both been asking about (such as n-1).
I’m looking forward to seeing how this project develops and what comes as a result of all this learning.