I thought I would do something similar here. It’s so easy to look at all the low points of the year, rather than the high points.
Here are some of the successes I’ve identified:
- Nat being able to walk again and not needing a wheelchair any more
- Discovering Zac has Neurally Mediated Hypotension and treating it, and seeing improvement
- My first publishing contract and publishing Lizzy’s Dragon
- Zac starting a new school and settling in well
- Zac joining youth group at school and making a new friend
- Finding a new team to help Nat with his CRPS, including connecting with the hospital school to help with his transition back to school
- Zac getting his Blue Belt in karate
- Zac getting awards at school
- Starting this blog to share our journey and raise awareness of CRPS and ME/CFS
- Connecting with the Ferocious Fighters groups for support with CRPS
- The amazing support we have received from our church
- The fantastic care Nat received at the new Monash Children’s Hospital
- Spending lots of wonderful time with my nephews
- Nat sharing his journey on his blog, Standing on One Leg
I’m sure we’ll think of more, especially once the boys get home from their dad’s place, but writing them out like this is a start.
In spite of the issues we’ve had this year, there have been many bright spots and successes in 2017. We are all looking forward to 2018.
I first heard about the Icelandic tradition of Jólabókaflóð or Book Flood about three years ago. As a book lover, I thought it was a great idea, but forgot about it and didn’t do anything about it. This year, in the lead up to Christmas, there were numerous posts about it going around Facebook, so I decided that it was a tradition the boys and I were going to adopt – whether they liked it or not!
Nat isn’t much of a reader. He enjoys books, but there are so many other things he would rather do than sit down with a book. Zac is more of a reader, but he also finds there are other things to do. I also struggle to find long periods of time I can just sit and read without the pressures of life crowding in.
In the lead up to Christmas, I had a lovely time choosing books for the boys, and I ordered the latest book by Nicki Edwards for myself. It was hard not to start reading it early…
According to the meme going around Facebook, the tradition was reading books and eating chocolate, so I added a block of chocolate to each package, along with a new CD for each of us so we could listen to some new music too.
I think the chocolate helped the boys embrace the idea of reading books all evening! Zac was excited about the idea of opening presents on Christmas Eve!
Once we had eaten dinner, we tidied up and then opened presents (yes, I wrapped mine too!). The boys were excited about their books. I chose The Boy and the Spy by Felice Arena for Nat and Nevermoor by Jessica Townsend for Zac.
We made hot chocolate, gave up trying to get the CD player working and looked up one of the new CDs on YouTube to listen to, and settled in for a lovely evening of reading.
I was amazed at how both boys got involved in this. After a crazy year of ups and downs, it was lovely to spend some quiet time together reading books. I’ve told the boys that next year they can get involved in the book buying too. They seemed to be open to this idea.
This was our first experience of Jólabókaflóð and it’s a tradition that we will definitely be repeating.
A couple of months ago, we rearranged the furniture in our lounge room for wheelchair access. Tonight I rearranged furniture again, this time for another reason.
One of the problems with CRPS is sensitivity. With Nat, it can get so bad that even air moving will cause the pain to increase. The couch was in direct line of the reverse cycle air conditioner, so if Nat was sitting there, we couldn’t have the heater or air conditioner on!
We have tried things such as a blanket tent, and tonight it was made of a sheet as that isn’t quite so warm, however we know we can’t constantly put up tents when we are hot or cold. So, I have rearranged the furniture.
The couch is now to the side of the lounge and out of the direct stream of air. This is an experiment to see if it makes any difference. If it does, then I’ll rearrange the rest of the room. Right now it’s looking very small and cluttered, however I’m sure that with a bit of tweaking we’ll be comfortable.
That’s one big job ticked off my list… though I wouldn’t recommend rearranging furniture at 9 o’clock at night!
At the time of starting this post, I have been awake for about an hour. For the first time in a long time, I’ve had a really long sleep in, and I feel almost human again!
When Nat is at home, there are medications he needs to have and exercises he needs to do in the mornings. So many people say that I should be leaving it all up to him, but the issue is that with the amount of pain he’s in, his first reaction is to not do anything, which is completely understandable. He’s also a teenager and, as any parent of teenagers know, he would rather sleep in than get up in the morning!
During the week, I need to get up to go to work, get Zac to school, get Nat to appointments, and do anything else that needs doing. Sleep ins are simply not an option.
Waking up around 11.30am was a luxury I haven’t had in quite some time!