First set of real wheels

Ever since Zac was diagnosed with spinal muscular atrophy I knew wheelchairs would be part of our lives, so I’ve had a while to prepare for our first “real” wheelchair. Zac was 17 months at diagnosis so was too small for a wheelchair – we got given a sort of buggy with a supportive seat to begin with until he was big enough. The day we picked up the buggy was tough – the realisation that my child was certainly different hit like a tonne of bricks. The buggy was huge & bulky and I looked and thought “there’s no way I can do this on my own”. The first time I went a walk with the buggy I felt like every single person was staring at me and my little boy and as I tried to manoeuvre round shops and public places I was so conscious of having to say “excuse me” while I squeezed us through “non-wheelchair friendly” gaps! I would hear comments like “wish I’d had a comfy seat like that” or “they didn’t make prams like that in my day” – they would make my heart hurt – I would’ve gave anything to have my baby in a “normal” buggy.

Fast forward to now – April 2018 – I’ve been doing this sma mum thing for a bit now and a few weeks ago we picked up our first “real” wheelchair! I thought I would feel nervous, emotional and sad at seeing my little boy in his wheelchair but the reality was very different: the moment I saw him in his bright green wheelchair I felt so proud, so proud of my baby who is now a little boy! His face beamed as he said he loved his “green machine” and I felt relief that he was finally in a supportive chair and no longer looked like a baby in a buggy!

And the mum I was at diagnosis?? The mum who was terrified of the bulky equipment?? Well I can take apart that “green machine” and put it back together in a matter of minutes! The mum that was conscious of everyone staring, now says “let them look” and the mum that was worried about asking people to move so we could get past now says proudly “big wheels coming through”!! As for comments – nothing will offend me anymore and Zac is totally cool with his wheelchair – he’ll answer any comments himself now!! He’s totally cool with his “different kind of normal”

Of course there are moments when my heart hurts and tears escape down my cheeks – every mummy wants to see their child take first steps or hold their hand as you walk to the park. I still pray for a miracle every day and I still believe in miracles but for now the reality is that my little boy needs a wheelchair so I will embrace it and make it the coolest “green machine superhero” wheelchair for my real life superhero living his “different kind of normal”.

Little moments of perfect.

Being mummy to two boys with very different needs is the most demanding job I’ve ever had. Some days it gets to bed time and I feel like I’ve screamed all day – “leave your brother alone”, “come on let’s hurry”, “we don’t hate in this house”, “keep your hands to yourself”, “stay in your own space” are phrases on repeat some days!!

Some days my boys argue, some days they make each other cry, some days they find it difficult to understand each other’s needs, some days they don’t want to be near each other, some days they call each other silly names. These are the days you feel so much pressure to be a “normal happy family”.

Some days my boys make each other laugh, some days they want to cuddle with a movie, some days the play silly games with each other, some days they understand exactly what the other needs, some days they are best buddies, some days they say the nicest things and have the funniest conversations and some days they are a team! These days make you realise you are a “happy family in a different normal”.

Sometimes little perfect moments happen in every day life and in these little moments you are more than a “happy family”, in these moments your heart explodes with pride at the tiny little humans you have made. One of these perfect little moments happened while we were out at the park: “mummy I’m going to push my brother today”. I watched Caleb push his little brother in his wheelchair to the park – he was so proud, so chuffed and his little arms using all of their five year old strength. He was a brother on a mission! As I watched my heart was filled with happiness, it was a tiny moment of perfect. I saw two boys who are so very different, I saw two brothers being one team and I saw two brothers who can conquer the world as “a different kind of normal”. πŸ’™πŸ’™

A day trip…… to the Toy Shop!

It’s day one of the Easter holidays and there are so many places to go, so many things to do, the possibilities are endless – only when you’re living a different kind of normal, life is lived at a slower pace, the simplest of tasks seem to take five times longer than normal and so today we achieved a day trip to the toy shop!

It’s the holidays so for some that means a long lie and lazy mornings – when you’re living a different kind of normal life it’s 24/7 – you don’t get holidays from that!! So the day started as normal at 6am after being up several times in the night – who even needs sleep anymore??!! Chest physio is the first task of the day for Zac followed by meds and feed started. Thank goodness Caleb set his timer and said he was staying in bed until 8:30am – breathing space to get my own brekkie – I did contemplate having Easter egg then decided cereal was better fuel for the day!

We checked the weather and figured it was too cold and damp for Zac to do anything outdoors so inside job it was, the boys were both excited to have Easter pocket money so unanimous decision was made – “we’ll go to the Toy Shop”.

Getting dressed: the operation begins – sma means Zac needs full physical support with personal care so first job is getting washed, then picking out his clothes (he likes to choose himself & change his mind several times before anything actually goes on), and finally physically lifting and dressing. Now to get Caleb ready – this boy loves a challenge so getting dressed can’t just be a normal task, oh no, the timer gets set and he tries to beat his record each day as I count down & remind him which order clothes go on in. Two boys dressed and it’s like we’ve ran a marathon already!! Bags packed and by the time we actually make it to the car it’s 2.5 hours since we said “let’s go to the Toy Shop”.

We drive to a shopping centre an hour away – partly so we can recover in the car from the morning’s marathon and partly because it feels like we’ve accomplished more if we manage a location more than 15 minutes away from home. We listen to eighties power ballads, an hour to chill before marathon number two begins.

We arrive at the shopping centre and operation wheelchair begins – we only picked up this new wheelchair last week but already Team Cam is a well oiled machine – one grabs the frame, the other locks the wheels in, an arm rest each, one side of the back rest each, anti tip wheels on and we’re ready to roll!

There is much excitement as we manoeuvre our way around the toy shop – Caleb our numbers genius shouts out the price of practically every toy carefully calculating his pocket money up. I remind him every few minutes to use his quiet inside voice and much to the amusement to every other shopper he uses his outside voice to announce that he has enough money for a dog poo game & oh how he loves poo!! And of course as we make our way up and down the aisles our big green wheelchair gets quite a bit of attention. Finally the pocket money is spent – iron man play doh and minions game.

Lunch: restaurants aren’t much fun when one of your boys has physical challenges and the other finds busy new places challenging so a bank holiday pub lunch is now a thing of the past and sandwiches in the car is the way forward! Back to the car and operation wheelchair commences again – this time in reverse order and I think we set a new personal best! Sandwiches munched, power ballads back on and the hours drive back home to recover from the second marathon of the day!

We make it home and have about an hour to play with the new toys before marathon number three begins – dinner, bath time and bed!!

So day one of the holidays and yeah in our slower pace of life we’ve accomplished a day trip to the Toy Shop and I’m feeling pretty pleased with that! It’s been a good day in our “different kind of normal”. ☺️