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”.