Finding My Strength: How my sons’ muscular dystrophy changed me

It all started when I took my oldest son to a paediatrician as he had (what I thought was) a habit of walking on his toes. He had done it for as long as we could remember him but I always thought he would just grow out of it. But now it was to the point where he couldn’t actually flex his feet far enough to allow him to get his heels flat on the ground when he was standing. I made the appointment figuring he would maybe just need some physiotherapy to help stretch his legs out and help things get back to normal. Boy, was I wrong! The appointment day came along, we were in there for about 5 or 10 minutes, and I will never forget the words that came out of the pediatrician’s mouth: “I think I know what it is, I hope I’m wrong, but, I don’t think I am.” After being referred to the children’s hospital and undertaking a few tests, it was confirmed that both my son and our 4 month old baby both had a condition called Duchenne Muscular Dystrophy, a muscle wasting condition that affects all of the muscles in the body.  It usually results in the need for a wheelchair by around the age of 10, and eventually affects the heart and lungs. It is 100% fatal, with few boys living past their mid 20’s.

Life completely changed. Every dream for our future dissolved and and everything I thought we would experience as a family was suddenly impossible. Looking back to that time is really hard, but I can see how it was a catalyst for a journey of personal development that would reveal what I was truly capable of. The diagnosis itself was something that took quite a while to come to terms with. I was literally living day by day, not thinking too much about the future and just focusing on whatever needed to be done in the next moment. I kept myself as busy as possible but there were times where my mind would start to wander. Breastfeeding in the middle of the night was sometimes the hardest. Just me holding my little boy close, sitting in complete silence. There were countless times where it led to buckets of tears while I tried to figure out ‘why?’ I was overwhelmed with grief, part of me feeling like I was already losing my babies. Then there’s the daily struggles. The (what feels like) neverending hospital appointments and constant searches of clinical trials that might possibly result in a cure for our boys. For me there is also constant anxiety about making sure they are safe. With muscular dystrophy, an injury can rapidly speed up the timeframe for which a wheelchair is required. Something as simple as a broken leg can lead to time spent  without using muscles which leads them to deteriorate faster than expected. I can’t even count the amount of times I’ve wished we had the luxury of saying “Oh well, if anything is broken we’ll just put in a cast and carry on.” But we don’t and it’s not easy.  Have you ever tried to tell a five-year-old boy to be careful, not to jump off there or climb on that? So I usually end up hovering and being that ‘helicopter mum’ (and yes, I’m happy to label myself that!) just to make sure my boys can still be boys and hopefully have fun without injuring themselves.

While contemplating all that we were going to be facing in the future, I had no idea how I was going to be able to return to my full time job as a primary school teacher. Not only was I worried I couldn’t cope with the added workload, I also had no idea how I’d be able to work AND still fit in hospital and specialist appointments and make sure my boys’ needs were met at home, school, and in the community. But more than any of that, I needed to spend every precious minute I could with my children.

So, returning to teaching wasn’t an option, but raising a family on a single income was becoming more impossible every day. We were living paycheck to paycheck, struggling to pay the bills, not being able to go on holidays, and never able to treat our children with special occasions.  It wasn’t the life we were hoping for. So I started looking for other ways of bringing in an income. Thankfully, I had a friend who had started her own business, working from home, and…

Being a mum of children with special needs can often be isolating. It’s easy to feel like you’re in this alone, like no else one understands, or like you’re better off just staying at home because you don’t want to put on a happy face. But now I’ve become part of an amazingly supportive community where I have made so many wonderful friends and where I can just be me. I am so grateful to have these mums in my life, even though they may not ever realise how much it has helped.

It has also taught me that I am capable of so much more than I ever gave myself credit for. I have been able to inspire others as they follow me on a journey of personal development and see me change as I focus on the positives in life. Now I get the most out of my day, have the mental strength to stay on top of my boys’ many needs, and I have the strategies I need to ease my anxiety when things become overwhelming. I am the strong woman that I have always wanted to be and the mum my boys need. My sons’ diagnoses have been the greatest struggle of my life, but everything that has followed has shown me that you can rise to meet every challenge.   As many of you who have children with special needs understand, what we face is definitely not easy, but what I’ve learnt in my time so far as a mumpreneur is that with focus, inspiration, support, and a positive outlook, anything is possible.