In the beginning, when hospital visits with Mason were becoming more frequent, and to the point at which we were told of Masons diagnosis – we knew there was no way out. Instantly the rest of our year had just been blocked off and we were ‘busy’. Our sole focus is on our little man and there was no wiggle room for excuses or backtracking. It was, as if we had been given the nudge down a waterslide and there was nothing we could do to retreat or deviate…just hold on and wait for the end – whenever that was?
Once that analogy had settled in, we found that being positive about things was the healthiest way to get by, when we had no end point in sight. Our previous posts have opened up with many of the challenges throughout the year whilst supporting Mason in and out of hospital, and it’s easy to be consumed by these on a daily basis. Allowing the negative thoughts to preoccupy our minds would start to drag us down, we recognised early on that we had to flip this around, otherwise we'd likely perpetuate the worst in any given situation.
When people found out about Masons illness, one of the first things that was commented on was his age, how young he was and how can something happen to someone at a year old. Whilst we agreed, by now we had already processed this fact and accepted it, and were already living the busy day to day of his testing and treatment schedules. There were lots of scenarios that could have played out worse, and throughout our year we frequently praised situations based on his age and how things could have been much worse if he was older. The short of it is, we all know that our little people of the planet shouldn’t have to ever face situations such as these, but it happens, and it’s out of our hands. Remaining positive was extremely hard at times but equally rewarding when we reflected on scenarios. We want to share some of the things that we discovered worked in our favour due to Masons age, which may reassure someone who is in a similar position:
Mason didn’t get anxious about travelling to hospital, or before scans, operations, or treatments. We have clocked up a ton of miles to and from hospital and they were tough enough. Most of the time Mase was happy just to be in his car seat, listening to music and spotting animals out the window.
Mason couldn’t talk, he couldn't voice to us that ‘ouch that hurts’ or that 'i'm scared' and didn't want another injection, or the medicine makes him feel sick. There was obviously times of discomfort which we endeavoured to help him with but it was easier without words and meaning. It was unavoidable to overhear some of the older children panic on the ward during the day/night, it’s unsettling to listen to regardless of who you are.
Mason didn’t fear the Doctors and Nurses, or beg us not to let the staff in the room again. He seemed to enjoy the attention from nurses, doctors and hospital teams often playing up to them with big goofy smiles or scowling and showing them his toys. (Maybe playing catch with his toys, possibly when staff weren’t expecting to catch a toy & he just threw it in their general direction).
Mason didn’t know what’s going on, and doesn’t know any different. That’s one less thing for us parents to contend with. He had no clue that there’s something wrong. He’s not worried and doesn’t expect the worst every day, he’s not asking questions or contemplating his fate......yet.
Mason kept on napping through the day. As a one year old, he still loved his morning and afternoon naps. We have kept them going throughout the year and it’s a chance for us parents to grab some time to ourselves, quick shower, cleaning, emails, food…. whatever. It’s an hour or two of silence if we’re lucky in our day where we can try and reset, catch up with work etc....
Mason didn’t miss school or school friends because he doesn’t go to school, and as a result, he’s not missing them whilst in hospital all the time. He hasn’t lost confidence or would be anxious about returning to school following cancer diagnosis and treatment, which may be something that older children struggle with. Some of the older kids on the ward mentioned that they miss their friends, confused why they can’t see them and asking when they can go back to school and see them, it’s difficult to overhear.
Mason is not bothered by the visible hair loss side effects of chemo. In fact his head is silky smooth and he quite liked the touch of his skin, just not when we put his sunhat on him though. He's not a fan of hats it seems.
Mason has visible scarring from his transverse laparotomy. He will grow up not knowing any different and unlikely to have long term negative effects of what his stomach used to look like before. When he hits school it will likely be referred to as a battle scar from sword fighting or a shark bite, which is about as cool as it gets.
Masons diet is fairly simple. Besides the refrigeration and warming up of his milk, most other snacks, smoothies and meal pots (like Ellas Kitchen range) could be stored and consumed at room temperature. We stocked our bags full of lots of different food options so he could pick and choose. He wasn't requesting particular meals or for his food to be cooked or laid out a certain way (as his big sister might have done). It was one less thing to think about when we were on the move or didn't have kitchen facilities.
These were some of the positive things that we discovered and reinforced during Mason's cancer diagnosis & treatment schedule. Endeavouring to be positive was our main tool to 'keep going', it doesn't mean we were happy. We didn't glide through 2021 with a neurotic smile on our faces. Being positive is more like a mindset or an attitude vs. being happy as a mood or feeling.
We hope this can encourage anyone else to seek out those positive 'nuggets' in difficult situations. Write them down, you may need to read through them now and again.
Photo credit: Take by dad, whilst doing a lap of MCR on an old rusty bike, in-between proton sessions. #keepthefaith
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