So the anniversary of Zac starting treatment has just been and we made a little video to celebrate all the milestones he’s made in the last year- as I was watching it got me thinking about all we’ve gone through in the last year and how much we’ve learned from it. So here’s a few simple things I’ve learned in the last year:
1) Take each day at a time:
After Zac started treatment he spent two weeks in intensive care in Glasgow sick kids hospital – it was probably one of the hardest times we’ve ever gone through. We were constantly travelling between hospital and home, trying to balance both boys needs, trying to spend time with both boys, trying to work, trying to survive on little sleep and that time felt like one of the worst times in my life! It was like being in a dark tunnel with no end in sight and there were days I honestly thought I can’t do this but guess what?? The day you’re in always comes to an end and a new day begins in the morning and you just keep going one day at a time. I used to be an organised control freak with events, dates & life all planned – now: one day at a time is my motto!! Don’t ask me to focus on something that’s a few months away – I probably won’t be able to do that anymore but ask me a few days before and I’ll have it sorted! It’s amazing how you change to adapt to your situation and for us life is done “one day at a time”.
2) Celebrate the small things.
We’ve learned in the last year that the small everyday moments are worth celebrating – you don’t always know what the next day will bring so celebrate the small things when you can! Whether it’s Zac being able to lift a toy that he couldn’t before or Caleb achieving something in school these small things are really big things to them so we’ve learned to make a fuss about the little things! There are things some people take for granted but for us they are massive – like seeing your boys splash each other in the bath, being able to feed yourself a yogurt, sitting with your head up, being able to go out as a family and make memories together. Life is for celebrating!
3) Surround yourself with support:
We have been blessed with an incredible family who constantly support us and help with the everyday different kind of normal. Without that support none of us would be able to function the way we do – we are a team and each person is vital to us making it through the day!! Whether it’s my parents sitting with Zac so I can do the school run or family coming to visit so I’m not on my own all day or a friend texting to see how I am, this support is invaluable!! I also have met a group of other “sma mummies” in the last year who are amazing – I can laugh with them, cry with them, ask advice on sma, ask advice on life in general and they have become the girls who totally get everything we go through! There’s very rarely a day where we don’t message to support each other and they have become a part of my everyday now! Friends from the “real world” are also an important part of support – they make me realise that “normal” life still exists and although I don’t get to meet up with friends as often now, on the occasions I do go out I’m reminded that these friends have stuck by me through everything!
4) It’s ok to have a cry:
The last year hasn’t all been miracles – there have been lots of hospital appointments, some days where Zac has not kept well, school appointments, work stresses, money worries, days where you wonder if you’re doing a good job, days where there are tantrums, days where you are shattered, days where you want a “normal” life, days where there are fall outs, days where you run around all day and accomplish nothing, days where the phone rings 5 times each with a different health professional and days where you just want to run away! I’ve learned that’s ok and it’s ok to have a cry, to let it all go, to grieve the life you thought you would have – once you’ve had that cry it’s easier to get your smile on again and then your ready to smash this different kind of normal again, you’re winning again!
5) spend time as a couple:
Doing this different kind of normal life can be a massive strain on any relationship – you’re both exhausted, you’re days are very different yet each one of the roles you play is vital to your family working, you both want to pursue part of your own interests too and the life you planned together is probably very different to the reality you are now living. We’ve learned in the last year that it’s so important to just be “us”. Our Saturday nights have become precious – boys get put to bed early and we have dinner just the two of us! It’s become the highlight of my week either having take away or planning a meal to cook so we can spend time just chilling together!
6) Embrace you’re role:
I’m someone who believes we are all here for a reason, we all have things we are good at and we are all needed in this world. Sometimes it takes us a while to find that “job” we’re put on this planet for but as we go through this crazy life I’ve learned to embrace my role. I never thought I’d be a special needs mum, never planned to have knowledge of a neuromuscular condition, never knew I’d be researching the autistic spectrum but here I am doing all of the above! We never know how things will turn out so embrace where you are now, be the best at whatever you’re doing and know that you have a purpose in life. I’m living my “different kind of normal” to the full and these crazy Cameron boys are my purpose in life, they are my reason for being on this planet and they’ve given me a miracle year.