Me, My Boys and a Bus.

I’m about to face my biggest challenge yet as a special needs mama. Since Zac’s diagnosis in 2016 I’ve faced many challenges and my mindset has very much been “let’s do this” – I’ve learned the physio he needs, set up feeding regimes through gastrostomy feeding, researched the medical terms and all that surrounds sma, mastered various bits of equipment and worked out how to make daily life work for us all in some sort of way but the time has come where I’m about to take on a new challenge. This challenge is not one I can say “let’s do this”, this challenge makes me want to run away and this challenge makes me feel sick with nerves. I am about to face the giant challenge of the WAV – wheelchair adapted vehicle. For someone who hates driving and has always driven tiny cars the bus that has arrived in my drive way seems like a giant to tackle!! Driving lessons for me were one of the most terrifying things I’ve done and I am someone who only drives because it’s necessary – a big van is the last thing I would’ve ever picked to drive and yet it’s here right next to my house and I have no choice but to take this giant on!

At 4ft 11″ my first challenge is actually climbing into this bus – it’s like climbing a mountain! Once you’ve jumped your way in though it’s actually pretty cool – there’s all the important things you want in a bus; fancy phone holder, sunglasses pocket, place to hide your purse, under seat storage for stashes of chocolate and a cool little fold down table with cup holders!! There’s heated seats, DAB radio and fancy temperature controls to set a different temperature in the front and back of the van. It has a sparkly, glittery non-slip floor and coolest of all the driver seat has a wee back massager!! Seriously though it obviously has everything Zac needs to make getting around much easier – his wheelchair comes up the ramp and clips right into the bus, there’s plenty of room for the multitude of equipment he has and it’s going to make daily life so much easier for him. So I’m going to be getting to grips with this bus – I need to learn the controls and will be practising how to clip a wheelchair in countless times. Then I’ll have to tackle the actual driving and how I’m going to park this bus in a supermarket car park (thankfully I know a good driving instructor).

So the new challenge begins – I feel like I should have L-plates again! If you see me, my boys and our bus out and about please be patient with us – I may be struggling to park or hesitating at a junction but I will be trying my best to get used to this hardest part of my “different kind of normal”.

P.s I always pictured myself more in an Audi TT.

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To Zac: On the eve of your 3rd birthday

To Zac,

It’s the eve of your 3rd birthday and the excitement is building in the Cameron house! It’s a bit of a miracle milestone you won’t yet understand but the rest of us do and that’s why we put you up to bed early to start planning your big day. Caleb sneaked back out of bed to help and I’m sure you knew something was going on as you shouted about 10 times for position changes, a drink, blanket on, blanket off, a story, you needed the door adjusted a certain way…..

You see, here’s the thing – your first birthday was surrounded by some mystery; “why isn’t he sitting up yet?”, “why hasn’t he crawled?”, what presents should we buy? We were in that limbo stage of waiting on tests, waiting on hospital clinics, wondering if we’d done something wrong, wondering what your future looked like. Of course we celebrated and you smiled away but you struggled to stay up in your hi-chair and you were exhausted after the celebrations.

We “celebrated” your 2nd birthday in hospital – intensive care to be exact! There wasn’t much party atmosphere as you had a serious chest infection and were on a lot of breathing support. The night before you turned 2 I left the hospital in tears – I phoned as soon as I got home and the nurse told me she had decorated your bed with banners and balloons – it devastated us all that we weren’t the ones doing the decorating. You opened a few presents on your 2nd birthday and the docs agreed to remove your ventilation for a few minutes so you could have a taste of cake. You were so poorly that only mummy & daddy were allowed to see you that day – your big brother was so upset that he didn’t get to help you blow your candles out!

So now it’s the night before your 3rd birthday and me & Caleb have filled the house with batman banners and balloons! The table is set with batman party plates ready for a birthday breakfast – we know you’re highly unlikely to eat a birthday breakfast but the rest of us are excited to eat toast off batman plates!! We’ve made a sign that says “Zaccy is 3” – Caleb did want to say “Zaccy is 2 + 1” you know how he is a quirky numbers man!! Daddy has built you a swing in the garden and we’ve piled all your presents up on the couch.

It’s the night before your 3rd birthday, tomorrow there will be no mystery – you are who you are, we know exactly what presents to buy you because at nearly 3 you are a master at telling us what you can do. We no longer need to wonder what the future will be – you guide us through the everyday one day at a time.

It’s the night before your 3rd birthday, tomorrow there will be no sadness – we’re all together at home and you’re stronger than you’ve ever been.

So we’re all ready for you turning 3 tomorrow – your 3rd birthday is for celebrating, you can eat cake whenever you want, you can see whoever you want, you can swing on your swing, you can play batman all day, your brother will help you open presents & blow your candles out and little one we will enjoy this miracle milestone of you becoming a 3 year old!

Love mummy x

A miracle year.

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.