As part of my eldest sons treatment plan he is currently going through serial casting. This is to try and correct the positioning of his drop foot and loosen up some of the muscles that are not working as they should. So basically it is to treat a symptom of the NF2 not the cause.
For serial casting he goes into the Royal Children’s Hospital once a week to have one cast removed and another put on. The idea behind this process is to slowly stretch and reposition his foot.
The process started last Thursday when he had the first cast put on and will continue for at least four weeks. As there are no broken bones or injuries he can walk on the cast but with the current positioning that is not possible and therefore he is on crutches.
One week into the process what have I learnt?
- The crutches that I always thought were super cool and wanted when I was at primary school are not (for parent or child) when they are your reality.
- Everything takes longer and your patience is tested when your child can’t do things as quickly as you want.
- You don’t notice how many little things a child of almost nine can do for themselves until you have to help them.
- You discover that the bath is a lot deeper than you think it is when someone has to sit down while standing on one leg and hanging the other over the edge of the bed.
- And finally as a parent you never get it right when helping a frustrated, grumpy child – you don’t let them try and do things/you don’t help them enough or you need to get something to keep their bare toes warm/why would they want a sock over the cast.
So at this stage of the process I feel very sorry for him and want to avoid him all at the same time. One week down and three to four to go……hopefully it works and the grumpiness, from both of us, is worth it.
Last week was full of big and small incidents that left me drained and emotional. By Friday afternoon one small incident was enough to tip my emotional bucket and leave me in tears. And while the weekend (and my mood) improved I knew that with the boys heading to their dads for a week I was up for another tough week.
Don’t get me wrong, I enjoy the quiet and having some time to myself after a couple of hours it is to quiet and too much time.
However knowing a week away from the boys is tough, and that I was already in a low spot I decided I needed to try and position myself for a good week as much as possible.
Step one: Sunday (last day with the boy) had to be about forgetting the terrible weather and messy house and more about having fun and building memories. Ten pin bowling followed by arcade games and lunch fit the bill perfectly.
Step two: get back to taking food to work so that I save money and eat healthier.
Step three: go shopping for healthy snacks and dinner ingredients. Then add a packet of Tim Tams – just because thy are my favourite and without kids I could eat all of them without hiding.
Step four: cook a huge batch of chickpea and vegetable curry to cover dinners for the next few days as having the motivation to cook healthy dinners for one can be difficult when I get home from work. Was very happy with how it turned out. There is something about slow cooking, curry and winter that all just goes together.
Next steps: fingers crossed for better weather so I can get out for walks. Weatherman is not filing me with confidence – after all it is Melbourne and winter.
And the rest is unknown at this stage.
I am a light sleeper.
I always have been and over the years it has got worse. Having kids obviously has a big impact on sleep, add to that a separation, child with chronic health issues and being an over thinker/worrier and an eight hour sleep is a pipe dream.
For some reason 3.00am seems to be the time I often wake during the night and then is when the brain and thoughts start ticking away. Sometimes it is a particular topic based on events occurring in my life at the time but often it is very random.
I decided to keep track of the weird places my mind goes at this time of night over the last few nights and share them for your enjoyment. Be warned in the light of day some of this does not make sense.
- How do I fill the gaps in the ceiling in the back room of the house without the gap filler falling out? (I am currently renovating my house)
- If I want to reduce screen time in my house what ratio should I reduce it by before it effects the amount of peace in the house?
- How do I best help my eldest son who suffers a lot with anxiety that is increasing due to his health issues?
- There is a charity gala for the NF (the genetic disorder my son has) – if I go on my own will it be a way to meet people or make me feel more lonely when they are dancing and I’m alone?
- Where do I find an 80s outfit for my girls night out in a couple of weeks?
- How do I get my kids to try more food especially healthy food and why do kids hate green food?
- What should I bake this weekend?
- Do I need a hobby or to do a course and when do I have time?
- If they say you should work in your passion to be happy then what do I do if I don’t know my passion?
- I need to start a business that will allow me to not have to get my kids up at 6am and be gone for 12 hours a day…….what is that business? (Many weird and wonderful thoughts on businesses at 3am)
- Did I give tattslotto the correct details as no one has rung me yet?
No wonder there isn’t much sleep happening – who has time. Luckily having a child that didn’t sleep for his first 11 months gave me a lot of practise on surviving on little to no sleep.
Today I have decided to do a review on a children’s book. Now I haven’t read the entire book but feel I can review this through the eyes of my children.
Currently in our house we are trying to reduce the use of screens. We have recognised we are becoming a little too reliant on them but for my children in particular, especially the eldest, it is becoming the constant go to. So as a result we are increasing screen free time. To assist with this I have been buying more books for the boys and trying to find ones that are a little different or focus on topics the boys are interested in.
One that I bought for my 8 year old is called “A funny thing happened to Simon Sidebottom” by P.Crumble. I was purchasing some other books and this one was at the counter. It is the first in what I hope is going to be a series as it has been a big hit. This book is a choose your own adventure but unlike the ones that were around when I was younger this book has quirky images and is very funny with humour aimed exactly at my boys (think gross jokes about bodily functions and dangerous stunts). Even the font used in the book is fun and easy to read. My boys are seven and eight and I highly recommend it for children in this age range. In the four days since he has had the book I believe he has read every version of the story at least twice.
Tonight in our quest for less screen time the three of us were making pizzas for dinner together. As they were cooking the boys came up with a plan to read the book aloud and at each decision point we took it in turns to decide which way to go. No screens and reading as a family happily at my sons choice – this book is a big winner for me and if there is a second I will definitely be buying it.
My boys went to their dads last night for a couple of nights. I find that when they are gone I usually pack my to do list full. This is for a few reasons. Firstly it is much quicker to get things done when it is just me, secondly the house is quiet and empty without two boisterous boys running around, and finally I hate feeling that I have wasted my time alone when it gets to the end of the weekend.
Sometimes being on my own is very lonely and other days it is about being alone and enjoying my space and my time. I have learnt that there is a big difference between alone and loneliness over the last few months.
So today was another jam-packed day and this one especially so as it is my youngest’s birthday on Monday. Tomorrow night he is having some friends for a sleepover so while I was very busy preparing for his party I was also conscious of enjoying some peace before the craziness of 6 and 7-year-old boys.
So in the business of the day I try to add some elements that are for me and often it is the simple things that are hard to enjoy when busy being a Mum. Today’s simple elements of the day that made me pause and appreciate the day were:
- Making avocado and poached eggs on toast for breakfast and sitting down for a while to enjoy it with a cup of tea.
- Playing music that was all my choice and singing along.
- Sitting down with dinner and a glass of wine to watch something on Netflix.
So in the middle of a crazy weekend I found time to enjoy the peace. lets call it the calm before the storm.
So many blogs and websites that I follow at the moment are discussing self-care and why it is so important for Mums to do something that is for them….to take time out, re-centre and rediscover, relax and rejuvenate.
While I agree wholeheartedly there are occasions where it just feels like an extra pressure being placed on Mums – find more time in your day to add in more things that will help make you a better Mum. As a single Mum of two young boys that works and doesn’t have family support nearby it is something I set out to do but don’t always achieve.
With the last weekend having been the four-day Easter weekend I sat back to review what I had done for self care and have come to the realisation that there is no formula for self care. What I think falls into this category will be totally different to what others think and do. To me self care is about doing things that help me stop, breathe and feel like me. They help prevent me from turning into the grumpy Mummy monster that needs it to be bedtime and they help me appreciate the moments of fun and laughter.
Finally, and possibly most importantly, they stop me from being the woman who is obsessively cleaning her rangehood at weird hours because it is something she can control and manage. As you may guess I have actually done this but my issues with control and organisation are a story for another time.
So in reflection what did I do over four days that fall into this category (disclaimer – my boys were with their dad for two of the days so I did have a bit more me time than normal and therefore the list is longer).
- Nails – I go and get my nails done about every three weeks. It is some time out that is not always peaceful but that makes me feel more like me, more together and makes me happy when I am typing on my computer.
- Walking – when I don’t have the boys I go for a walk – early in the morning if I can. I always listen to music so that I don’t spend the time over thinking as I often do. The loop I do only takes me about 20 mins but it makes me feel more awake, gives me more energy and gets me up and moving on days when it can be hard to get started.
- Smiling Minds – I have always been a light sleeper. Adding two children, a separation and my sons health problems have made a decent sleep almost impossible. I have now started a routine where I take homeopathic formula melatonin when getting ready for bed and then listen to Smiling Minds (the sleep mindfulness meditations on the app) once in bed. It is working really well and I am now asleep before the 8.20 mins is up. I don’t think I need to cover the benefits of sleep. Staying asleep is another story!!
- Music – Spotify is my new best friend (in close second is Netflix). Music gets me out of my head, removes the deafening quiet when my boys are gone and allows me to dance and sing my way around the house.
- Easter Egg Hunt – I set up a great Easter Egg Hunt in the backyard for my boys before they came home from their dads. My youngest had been talking non stop about how he hoped the Easter Bunny would do a hunt. The reason I have added this to the list is that for half an hour the three of us were outside, having fun, thinking of nothing else and I got to enjoy the fact that for a little while longer they still believe in the magic of Easter/Christmas etc. And that is good for my heart and soul.
In the end I think it is important to remember that while it is important you take moments for yourself and practice self-care it has to be what is right for you. There is no point committing yourself to self care that is actually adding more stress and pressure. So I will continue to bake, have beautiful nails, exercise, sleep, listen to music, dance and enjoy my boys as much as I can before they hit teenage years and no longer want to talk to me.
Yesterday was the National Day of Action against Bullying and Violence in Australia. Once again my son’s school took a stance to show that they do not tolerate bullying by having all students wear red for the day and attend an assembly about what to do if you see or are a victim to bullying. I am so proud that they make this an important part of their agenda each year and that on this day as well as others they show that there is zero tolerance for bullying.
My eldest son has NF2, a genetic disorder that causes tumours to grow on the nerves – predominately in the brain, spine and surrounding core area as well as the auditory nerves, and restricts the ability for the messages to get through. Currently it impacts his walking and over time there will be issues with hearing and many surgeries ahead. One of the many things that currently keeps me awake at night is the worry that as my sons condition worsens how will the other kids treat him. Will he become a victim to relentless bullying and how do I protect him? I am sure there are many parents that worry about this as well.
Last night I watched The Project (news program) and they did a very interesting story on the anti-bullying movement with a video that brought me to tears. And at the end asked people to not only talk to their kids about bullying in case they are bullied but also in case they are the person doing the bullying. We must keep both in mind as it is the only way this will stop.
I have added a link to the video below in case you want to watch it. Hopefully it moves everyone else as much as it did me.