Hi, I’m Josh from Stockport. I’m 32 and I’m type 3. In February this year, I became a first time Dad to my baby boy Arthur and wanted to share my experience so far of being a busy working Dad with SMA.

When my fiancé Bex told me she was pregnant, I felt a total mixture of excitement and nerves. I couldn’t wait to become a dad but did feel anxious about how much I’d be able to do with the baby. I’ve got very limited strength in my arms and knew I wouldn’t ever be able to lift the baby myself or do things like feed him and bathe him.

The day Arthur was born was the best day of my life. The first time I held him was amazing, but I was terrified I was going to drop him! I’ve never been able to hold him completely unaided but we’ve found ways of using cushions to prop him up so I can have cuddles with him without assistance from anyone else.

The first couple of months were really tough and I admit I did worry about bonding with Arthur properly as I couldn’t do many of the things most able-bodied parents do with new-borns. However, as he’s got bigger and more interactive, we’ve found our own ways of playing together and we share lots of special moments. His favourite game at the moment is grabbing onto my foot on my wheelchair footplate whilst he’s lay on the floor and then I reverse so he has to let go…this never fails to get a giggle!

The main thing I’ve learnt so far about being a dad is that the physical tasks don’t really matter. It’s all about the engagement and communication. Arthur doesn’t care that I’m not the one holding his bottle or bathing him etc – he just loves me to be there during these times.

I’ve always been a hard-worker (Bex would say a workaholic!) and have worked for our busy family business as General Manager since 2010. Like many others with SMA, I do struggle with fatigue, but my attitude has always been to keep pushing myself and just keep going, as I’m not great at downtime. Since Arthur arrived, I’ve made a conscious effort to be more present when I am at home and leave work at the office…most of the time! It’s been tough at times, heading into work after a night of disturbed sleep but I wouldn’t change it for the world.

If I’d have known earlier just how amazing a bond I’d have with Arthur, I wouldn’t have worried half as much about being a disabled Dad. I’m not naive and I know there will be some challenges as Arthur grows up but to him, I’m just his Daddy who makes him laugh and that’s all that matters to me.

First published: September 2021