Our amazing weekend started on Friday. It really started about 10 days ago when we decided to attend a Gizzie family reunion weekend on Phillip Island. This weekend was for my family, including my uncles, aunts, cousins, and my cousins kids.
We hadn’t committed to the weekend earlier as we weren’t sure if Nat would still be in hospital, let alone cope with the 90 minute drive from our house! The boys and I discussed it and decided we would go.
When I looked at the weekend, I decided that we would drive up on Saturday morning, mostly due to Zac having a week at school and then exams this coming week. Nat was quite excited to find that the reason had nothing to do with him and CRPS. My parents offered to take Nat up on Friday when they went. Nat was keen to go with them.
On Friday afternoon, I was sent this photo:
This is Nat, not only paddle boarding, but also wearing a wet suit! Both of these things we didn’t think he would be able to do a few weeks ago. He had so much fun.
I have to admit to getting teary looking at the photo. He has come so far and done so much work to get to this point.
By the time we arrived on Saturday morning, we found out that Nat had been kicking the football that morning. He was pretty tired after that and had decided to stay at the camp site instead of going to play at the beach. He was happy to see us when we arrived. Zac was disappointed to miss playing at the beach with everyone as they were leaving as we arrived.
It was great catching up with everyone, especially meeting some of my cousins kids that I hadn’t met before, and having cuddles with my cousins four-month-old baby.
The atmosphere was relaxed and the kids all ran around playing. Nat had a wonderful time on the trampoline, and just about everyone ended up in the pool!
Everyone was starving by the time dinner arrived! Meal times were a great time of fellowship and catching up.
On Saturday night, Nat was in a lot of pain. He lay in bed describing CRPS pain in his feet. The first thing he did was ask me for a sheet as his feet were sensitive, he could feel everyone moving about in the room next door! I could also hear him talking to himself, reminding his brain that his feet were normal.
He didn’t get heaps of sleep and the next morning his feet were still sore. The first thing he did was put on his socks and shoes. He was a bit unsteady on his feet and asked me to walk next to him, but he was soon steady again. He was sore and spent an enjoyable time cuddling his 1 year old cousin and 4 month old second cousin.
Zac was very tired on Sunday morning. He had also overdone things on Saturday, running around doing the low ropes course, playing in the pool and more. Even though we didn’t get to the beach with everyone, he still had a ball.
During the morning, we had an informal service with some family friends, who had known the family for about 60 years! It was a lovely time of singing and worshiping together, even if half of us had our phones out to look up the lyrics to the songs!
Lunch time was the end of the weekend, and we packed up and came home. By the time we got home, we were all pretty tired, but had had a fantastic weekend.
The boys had overdone things on Saturday, but they both agreed it was totally worth it!
One of the big challenges we have is limiting screen time for leisure. It’s easier on days when Zac is going to school, as he’s at school most of the day and it’s just mornings & after school. When the boys are home all day, they can easily get bored.
Finding things for them to do that isn’t as easy as you may think. There are long periods of time when one or the other of them has been home on their own. Things like playing board games isn’t all that fun when there is only one of you!
We have a list of things on the fridge for the boys to do instead of playing on their iPad or laptop. There are only so many jobs around the house I can leave them when I go to work…
So often, I come home from work to find both boys playing on their tablets and the jobs left undone, so it was a lovely surprise when I came home to this:
The boys had been playing Monopoly for most of the morning! They reported that this was their second game and Nat won the first one. I did interrupt their game so they could hang out some washing…
Zac is pretty ruthless when he plays, buying up as many expensive properties as he can and putting hotels on them, so we don’t tend to play Monopoly very often. From watching the boys, they are each giving as good as they get. Their cash stores are running low, but they are determined to keep playing until one or the other of them is completely broke!
It’s taking a while to break the habit of screen time for leisure, but from this view, I can see that they boys are starting to figure it out. I suspect that some board games may be on the Christmas shopping list this year…
In a future post I will share the list that’s on our fridge. Little by little, we are learning how to live with CRPS and ME/CFS in a way that gives us a life and fills our home with laughter.
When you’re working and have chronically ill kids, managing work is only one part of the equation. There is also managing the house, child care, appointments and more!
It’s hard not to feel like you have to do everything!
The problem with doing everything means that you’re more likely to fall apart and feel even worse about everything.
Here are some things that I’m learning (and I’m still learning as I often forget!):
- Accept help – there will be people who want to help and support you. Accept their help.
- Be specific – when accepting help, be specific about what help is useful. Do you need someone to clean the bathroom or go to the supermarket, or sit with the kids for a while? Let people know what it is that you need.
- Be flexible – sometimes people won’t do things quite the way you will do things. Let them help. In the long run, it will reduce your stress levels.
- What do YOU need to do – work out what are the things you need to do as opposed to what needs to be done. For example, there are certain appointments I have to attend as a parent/guardian needs to be there, but there are other appointments that other people can take the kids to.
- Quick and Easy – for meals, I go for the quick and easy option. Sometimes this means takeaway, sometimes it’s eggs on toast for dinner. We do what we need to do to get through the day.
- Pay for help – hire a cleaner, a nanny, whatever you need to help. If there are things that are getting to you, sometimes it’s better to pay for help rather than let it get to you.
Life is a juggle, but you don’t have to manage on your own…
What would you add to this list?
I’m a single mum. When my younger boy turned 7, I was told I had to go to work. So I did.
I was incredibly lucky to find a part time job around school hours. It was still hard fitting in work, life, kids, after school activities, housework, and so on.
When you add in sick kids, life gets even more complicated. There are doctors visits, therapy appointments, medication, school appointments, and so on. Fitting all this at work can be a challenge.
I am incredibly lucky in my workplace as I work with my parents, so probably have more flexibility and understanding than many workplaces. That doesn’t mean to say that you can’t ask for flexibility and understanding from your workplace.
Here are a few things I’ve learned about working around chronically ill kids.
- Communication – tell your boss what is going on as early as possible. Even if you are waiting for a diagnosis, talk to your boss.
- Flexible hours – it’s not possible in all workplaces, but see if you can negotiate flexible work hours. If your appointments are set through the hospital, it’s not always possible to predict when they’ll be. If it’s easy to swap days around appointments, it will make things easier than having to take a leave day!
- Flexitime – see if it’s possible to work flexi time. This means that instead of being paid overtime, you take time off in lieu. Again, this may not be possible in all workplaces, but it’s worth asking the question.
- Work remotely – it may be possible to put things in place so you can work from home, or from the hospital. My workplace is starting to set this up, and it was great to be able to log into the hospital wi-fi and do some tasks that had to be done today.
- Reduce your hours – if you are struggling to keep working and care for your kids, see if you can negotiate reduced hours, even in the short term, and increase them again as life settles down.
- Leave entitlements – check what leave entitlements you have. The most common are Annual Leave and Sick/Carer Leave, however your award may have others. See what leave you have and what you need to take.
As a single parent, I don’t have a partner to share the load. Even if you have a partner, see if you can both negotiate changed work conditions so you can share the load. It doesn’t always have to be Mum who attends the appointments or stay home with a sick kid.
If you are in Australia, the Fair Work Australia will have more information on leave and entitlements. Go to www.fairwork.gov.au.
Do you have any more tips I could add to this list?
This morning, Nat woke with a raging cold. He had a blocked nose and sore throat, and his pain levels had increased. Zac and I went to church and left Nat home in bed.
By the time we got home, Nat was up, but pain had increased… Zac and I couldn’t walk across the floor without Nat’s feet being so sensitive he could feel every step!
I’ve been dosing him up with honey and lemon drinks, vitamin C, and all the usual things we do for a cold. On top of that Nat had a warm bath to help with the sensitivity in his feet. The bath seemed to help a bit, though Nat says his feet still feel a bit weird. We are also keeping him moving.
The key to continued recovery is to keep moving. This includes walking as well as doing the exercises that have been set by Nat’s physio.
It seems that every virus he gets does strange things to his body, giving him weird sensations and pain. Moving forward, we need to do everything we can to keep him healthy as it seems that bugs can make things worse. Not quite sure how we are going to keep the bugs away (it hasn’t worked so far with Zac), but we’re working on it…