I’m sure every parent who has a child with SMA, or indeed any long-term condition, can relate – that look you get when you meet someone who looks at your child with that sweet half smile and that well-intentioned but absolutely infuriating “I don’t know how you cope”.

A bizarre statement, which sends many responses flooding through my mind. Some less polite than others.

I am the very proud mum of two fantastic humans. Smart, funny, kind, determined. They both know what they want out of life and go for it while also making sure they have a lot of fun along the way.

SMA doesn’t define them – it’s a part of them, in the same way as having curly hair. Of course, often a more challenging part (although memories of trying to brush my daughters’ hair after a shower may make me question that). On that note, they don’t always make it easy – I’m thinking battles over physio…!

I am being a little flippant but the point is that for our family, SMA is something that is part of our normality and we do our best to get on with it.

That isn’t to say it isn’t incredibly difficult sometimes, both for the children (although they are no longer that, but young adults), or as their parent. I never want to revisit watching my daughter go through spinal surgery. I remember every day the feelings I had when she was first diagnosed – the grief for the life I had expected her to have, the fear of what the future would hold for her. Especially as I didn’t even know what type she had and she was already two and a half. It was horrendous. It made it very hard to let go, to not succumb to the urge to wrap her up in cotton wool and keep her safe.

When my son was also diagnosed and grew up to have no sense of fear in anything, that feeling flooded back – I used to torment myself every time he went to the park with friends in case he tried doing something or climbing on something and broke a limb, what the long-term implications of that would be. My mind would go into overdrive…

I think I’ve got better(?!) even though I was frankly a mess when I left my daughter at university for the first time.

We had had months of meetings prior to this, sorting out universities, accommodation, funding, support, medical care. Some of it had been straightforward, other elements absolutely not and in fact, still rear their heads on a regular basis five years in. Some of the complications meant that she wasn’t able to get excited about going off to university in the same way other young people her age could, with many things only being sorted out at the eleventh hour and causing unwarranted stress in the meantime.

Leaving her for that first time was excruciating, I’m sure it is the same for many parents but it was heightened by the fear that everything we had put into place was going to work. Would she like her carers? Would she manage in her accommodation? Would she be able to get around the university? What if she got ill? But, as always, she did me proud and the answers turned out to be mostly positive – the rest we dealt with as they reared their heads. A feeling I’m hanging onto as my son is now getting ready to do the same.

But the challenges are not always about the big things.  I’m sure everyone has experienced that immense frustration when a supposedly straightforward process becomes far more complicated than it needs to be, due to the inability of the person on the other end of the line to do their job properly. While we may know it is not always their fault, that the problems often come from lack of training or funding, the result is the same.  Life just becomes more difficult. A simple task can take a day. I learned a long time ago to start processes long before we thought we would need an outcome.

This unfortunately, seems to be part of the normality when living with SMA and the knock-on effects of this can be huge.  Frustration for the young person – why should my driving licence take seven months to come through when my friend got his in three weeks? I am struggling to pay my bill as someone has messed up my PIP, despite nothing having changed in six months. I can’t sit up in bed without help as the OT has said it will take two years to get someone out to assess me for a bed riser. Our young people have to deal with so much more than their peers anyway, so as a parent it becomes difficult to watch when that is made even worse unnecessarily.

There is also the time implication. I want my two to be out doing all the things other people their age are doing. Not spending hours chasing people who haven’t done what they said they are going to do.  Having equipment that doesn’t work as promised or that breaks too easily – waiting around for people to come and repair it, who then don’t turn up.  The pressure it puts on all of you as you try and resolve things that have been made unnecessarily difficult.

As our children become adults they naturally become more independent.  While letting go can be difficult, isn’t this also what we brought them up to do? Spread their wings, fly the nest.  But for a young person with SMA that often, sadly, is more difficult.  Rent for accessible properties is higher if they are even available. Some degree of compromise so often required meaning making do without certain necessary adaptations, so that straightforward tasks such as showering can be an event.  The very real challenges of getting a job, for anyone but especially so if you have a disability, turn this upside down as lack of income doesn’t sit well with the higher expenses that having a disability can bring.

And of course, healthcare. Both of my two have now transitioned to adult services. Like most things, they have coped well with the change although sad to leave behind the people they had got to know over the years.  Me – I was in bits! After twenty years going to Great Ormond Street Hospital with the same team always there to support us, it was a massive wrench. That fantastic team of people had held our hands through so many ups and downs; it was quite unnerving and felt a bit like we were being cast overboard without being able to swim.  In children’s services everything is offered to you, while in adults you have to ask.  It was actually really daunting. However, I quickly realised I should have had more faith, as the new teams have proved great, albeit very different and we have good foundations for learning what we need and how to go about getting it.

I realise that everyone’s experiences are different. I mentioned earlier about the fear for their future.  That can show up in many ways but for me it was a determination to grab opportunities, to do things while we could as we didn’t know how feasible these things would be as they got older.  For us, that often meant travel and we took the chance to go on some great adventures while they were still young enough to be portable!  I’m very happy to say that as they have got older those fears have proved unfounded but I also realise that their SMA forced us to get up and do things that we may otherwise have just talked about.

And for our family that is really the point. Ableist narratives deem sympathy as an appropriate response, whether you are the person with SMA or their parents. They frankly don’t know what they are talking about.

My two have full, exciting lives. I sometimes think about the early days and what I wanted for them. And realise that with or without SMA, that is exactly the same.

We have had our fair share of challenges, both SMA related and otherwise. I’m not negating the impact SMA has had but it is also true that not everything they have become is because of it.  We have good days and bad days. The kids drive me to distraction at times (As I have no doubt I do them!). But isn’t that just like any family?

I look at my two each day and just feel lucky to have them in my life. They are now 23 and 18. They are strong, good human beings, far more astute than I ever was at their age and with the confidence to stand up for themselves.  They have great friends who accept them exactly as they are and they do the same in return. They are thriving, each working towards their own goals and navigating the humps in the road as they arise. The same as every young person their age. They are happy. The rest, we deal with it as it comes.