Month: December 2017
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.
We would like to wish you a very Merry Christmas and a Happy New Year.
Thank you to everyone who has followed our journey this year, especially during 2017, which was a tough year for all of us. We are looking forward to a fresh start in 2018, and will continue sharing our journey on this blog.
Today will be spent with family and friends celebrating the birth of Jesus. The image above is a knitted nativity set that my mother made for us last year.
We hope you have a lovely day.
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.
Nat has has some really good days lately, riding over to his Aunt and Uncle’s place, walking their dog, playing with his cousins, and helping his Uncle make things in his shed. This morning started no different than any other morning. He takes a while to wake, but that’s pretty much the same as every other 15 year old boy!
This morning, we went to church as we do on just about every Sunday morning.
Things started changing as the band geared up to play. The sound had been set in such a way that the bass guitar was louder than usual, or the other musicians were quieter. Nat’s legs are still quite sensitive and he could feel the vibrations of the bass guitar through the floor. It didn’t seem to matter that we were sitting on the other side of the church.
These vibrations caused a minor pain flare in Nat’s legs. He ended up using all the tools in his toolbox to make it through the service. This included having some chewing gum (chewing helps keep his mind off pain), and going for a walk around the block.
He did join in the service, but left the church when it was time to sing the final songs. Standing outside the church, he said he could still feel the bass through his feet!
This afternoon has been quiet. Nat is digging into all the tools in his toolbox in an effort to keep the pain down and prepare him for Christmas tomorrow.
Life with CRPS is certainly a roller-coaster. The main difference is that often you don’t see the ups and downs coming!
We are crossing fingers and toes in the hope that Nat’s pain will settle down and he will have a good day tomorrow.
There have been many days on this journey of ours where it’s easy to get discouraged and think that life will just be a long line of lows without very many highs. Then I have evenings like tonight when I’m so proud I think I’ll burst.
Tonight, Zac went for his blue belt in karate.
This year has had its ups and downs for his karate classes. He missed a term due to ill health and his brother being in and out of hospital. He started back in classes at the start of Term 4. I was quite surprised when I received the invitation for him to sit his test, but they don’t send invitations unless they feel the kids are ready. Zac was keen, so I signed him up.
Over the last 24 hours, he hasn’t been too well. My parents were going to take him to his class last night, however he had fallen asleep as he was wasn’t feeling well! He wasn’t too good this morning, so I emailed the school to say that he was unwell and may not be able to attend. Thankfully, he was feeling better by lunchtime.
Dinner was rushed so we could get out of the door by 6.15. Zac was very excited.
He joined the other kids in the gym and got ready for his test.
As they got started, I watched Zac following the instructions. He looked really good out there, going through his moves with all the other kids. As the test went on, I could see him getting pale and losing his concentration – a sure sign his blood pressure is dropping. In spite of that, I could also see him concentrating as hard as he could on following the instructions. He wasn’t going to let it beat him!
After a break and a drink of Gatorade, he started to feel better and was able to complete the test.
When the test was over, including watching six students achieve their black belts, one of the instructors got up and spoke with the students. He was saying that in karate, as much value was placed on giving it a go and showing up, doing your best and participating, as on getting the moves perfect. His words meant so much to me, especially given the challenges Zac has been facing.
At the end of the evening, Zac wanted photos with his instructors. Each one of them congratulated him and told them how proud they were of him, and they knew how hard it was for him to show up each week and do what he’s doing, and that this evening was a huge achievement.
I’m so proud of Zac and how much he has achieved in his karate over the last few years.