Milestones can be tricky to navigate in life. Rather than markers on the road, they often become obstacles. Things to encounter and embrace, or struggle through. My own relationship with milestones in recent years has been a challenge and the casual parlance with which I used to regard them has been replaced with at best, distaste and at worst, distrust. When you have a child with a developmental delay the discussion of milestones becomes fraught and can seem hopeless. Lately, I have consigned them to a mental drawer with an incomplete baby book and a forgotten cross-stitch project. We make our own markers now and we work hard for them.

With a healthy cynicism about arbitrary milestones, I pondered my upcoming ‘Big Birthday’ earlier this year. I was drawn to thinking about who I wanted to be rather than what I wanted to do. While I think the social narrative around ageing is improving, it is true women have some biological realities to consider while also having seen enough of life to know what challenges might lie ahead.

As a parent carer, ageing brings its own challenges, and I am thinking about the longevity of that. While my son gets bigger and heavier, I am wary of how I move and handle him, how I keep him safe, and how I prevent injury. I need to be healthy to care and have the energy to keep up with him. I want him to access playgrounds, soft play, theme parks, fairgrounds, and leisure pools. I want to manage the hurdles of taking him abroad for therapy. I want to be resilient for the unexpected challenges that come my way. I want to be mentally sharp and emotionally balanced when I have to advocate for him and challenge authorities who have different priorities. This is not a new quest but one that is ongoing. In spring, I found myself a bit in a rut. Thanks to a great trainer, I knew what I had to do and how to do it, but I needed microfocus and a period of sustained accountability to get into a good routine. None of that sounds very ‘self-care-y’, but as I have said before, self-care is not always what you want to do, but what you NEED to do.

My biggest inspiration for doing things that feel hard and keeping complaining in check is of course, my son. Earlier this year he had a big operation for hip dysplasia and spent 4 weeks in a pretty horrendous cast. This is on top of years of inpatient treatment, surgeries and therapies. As I frequently come up against conflict with the local authority I remember what he has endured and how he is vulnerable but also, tough. Which is the approach I take to advocacy. Being strong enough to insist we can access the support we need but vulnerable enough to articulate why we need it and admit our infallibility. I have spent three years pleading with the local authority to get wraparound care organised for him in the summer holidays. Like most parents, his dad and I take two weeks of holidays, compared to his six. To be clear, the reason why this is more of a challenge for parent carers, is because holiday camps and out-of-school clubs that mainstream children can attend are not accessible for all children. Our son needs a hoist and plinth for changing, one-to-one support and staff who are trained in delivering buccal medication. This year has been worse than ever and one day of term remained before I had certainty that there would be any kind of provision.

In the last three years, I have been off work (ironically) in May or June with the stress/stress-related illnesses of sorting all this because it raises some pretty tough emotions, memories and pretty depressing thoughts. Even my most tried-and-tested coping mechanisms are withered and worn by it. This year has been different. Because I set myself a challenge in April that I would complete in May and June. I embarked on an ‘8 week lean’ programme at a local and independent gym. It was recommended by the brilliant trainer I mentioned earlier as the gym she would always trust to send clients to. Getting ‘lean’ was a side effect of what I was looking to achieve. I wanted to make habits that would build a good routine and see me physically and mentally thrive in the hardest part of the year. I wanted more energy, clarity and stamina and yes, I wanted the changes I made to my activities and diet to change my shape physically to a body I was more confident in. So how did I fare?

This year, I stayed in the lean programme, stayed in work and despite so much uncertainty remained pretty resolute and focused on my goals. My energy levels are better and so is my motivation. The lean programme has created a good routine. I have managed and wanted to keep it going for myself in the most challenging part of my year. Daily measures include calories, nutrition, exercise and steps. Daily check-ins build a cohort and momentum. The gym itself offers a challenging but supportive environment. The first sessions of feeling shell-shocked were soon replaced by an appreciation of the process and progression in exercises.

The fitness industry talks about ‘non-scale victories’, signs that whatever changes you make to your lifestyle are helping you beyond numbers on the scales. This might be losing inches in your body measurements, clearer skin, lifting heavier weights, having more room in your clothes, sleeping better etc. These can be more impactful and realistic than a weight goal and for some people, more meaningful than being stage or photoshoot-ready. I was clear that my programme would not have before and after photos, but energies.

For a long time, my focus in training and looking after myself is being the best possible parent carer to my son. So I can lift him, carry him into soft-play, change him, take him abroad for swimming therapy and be mentally and physically up to the challenges and provide opportunities. I want to be fit enough to do this for many years to come as long as it is safe for us both. Turning 40 is a pretty big reminder I can’t take that fitness for granted and I wanted to celebrate while feeling at my best. I imagined how I wanted to feel on my birthday and I wanted energy and strength. In the two days before my big birthday I took my boy swimming, carried him onto a fairground ride, drove him around in a dodgem, lifted him into a swing and introduced him to his new holiday club which started this week. Tonight we tucked a tired and happy boy safely into bed and being able to do that for a long time is my biggest motivation.

Note: I am aware having a gym membership and making this investment Is a privilege not accessible to all parent carers, nor is the time to go. Having two adults in the household in employment is less likely in households with a disabled child. We both remain employed due to the kindness (and relative fitness) of our son’s grandparents who collect him from school on working days. We have understanding employers and job roles that can adapt when needed. This is due to having established careers before our son was born. This arrangement currently does not have a back-up plan and the only out-of-school club offering the care he needs in our whole city opened only this week and is funded for a fixed period by a charitable trust.