Category: Melissa


Successes for 2017


I’ve been doing the 12 Days of Christmas for Writers with Julie Hedlund. Part of that was reflecting on our successes for the year. My post is on my writing blog here.

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.


Book Flood – 2017

December 24, 2017

Melissa, Nat, Zac

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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.

Our books and chocolate!

 

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.

 


Rearranging furniture

October 16, 2017

Melissa, Nat

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My couch isn’t quite this fancy!

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!


Where everyone knows your name!


Nat had an appointment at the hospital. This is the second time there this week, and it’s not uncommon that we’re there two or three times a week (or more).

We are usually greeted by the people who work on the information desk. Nat gives me a hard time because I always have a little chat with them. I recognise them on sight, even though I keep forgetting who is who, and they know who we are.

There are a number of people who work in the Starlight Room as well as cafe staff and nurses who recognise us and ask how we’re going!

Part of the reason they know us so well is that the hospital seems to be a second home for us right now. We are there multiple times a week and Nat has had three admissions so far this year.

Another reason is that Nat is pretty unforgettable. He constantly has a cube in his hands and people are amazed at how fast he can solve it. Today we ran into one of the Starlight Room volunteers who shared Nat’s cubing skills with others in the hallway!

 

 

The photos are pretty dark, but you get the idea!

We are often asked how Nat is going with his cubing. I am also asked how my latest book is going after we took Nat out of the hospital for the book launch!

We were talking today about whether or not this is a good thing… It does make the hospital seem a much friendlier place with people smiling and greeting us. On the other hand, the fact that they know us means we’re at the hospital a lot!

Both of us are looking forward to being able to say Good Bye for the final time as that will mean Nat’s healed. Though in the mean time, we look forward to the friendly greetings and the chance to talk about our interests rather than constantly talking about pain.


Sleeping in

October 8, 2017

Melissa

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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!