Feeling ‘other’

In an earlier life, I spent a few years working as a children’s nanny. I considered it a huge privilege to be invited into people’s families, to be entrusted with the care and nurture of their children, and to be treated with respect as, effectively, a third parent in their family dynamic.

The responsibility was one I never took lightly. I loved every child I was tasked to care for fiercely. At the time, I always assumed I couldn’t have loved my own children more, or invested more care and time in my own children as I did with my charges. I can now confidently say, post three children, that was a correct assumption. The only difference when I was employed as a nanny between the care I gave my charges, vs the care I now give my own children, was that the nannying hours were more agreeable and there was always a cavalry which would arrive at some point during the evening.

It was no accident that the majority of people I socialised with, when working as a nanny, were parents. I gravitated towards them, as I was only interested in delivering the best care I could, and learning from parents, often close friends of my employers, seemed a fabulously insightful way to mirror the attentive parental care I was determined to deliver.

Fast forward a decade & I found myself & my children, in unfamiliar territory. A landscape I had no experience of, and one from which I was unable to shield my children. Once again, it seemed to me the most sensible approach to take would be to engage with those already familiar with this terrain. However, this time it wasn’t enough for me to only engage with other parents of children with diabetes. I wanted to know how things felt for a person living with diabetes. Were there any pitfalls I may blunder into that I would be able to avoid if I had the knowledge of the reality of how it was to live with diabetes? This search led me in the direction of the diabetes online community. There I found adults who were incredibly generous with their experiences, knowledge and time. That generosity enabled me to grow as a parent and develop the skills I would need to ensure I was supporting my child with diabetes to thrive in the most positive way possible. It was a community I felt lucky to access, and the support has been immense.

Except when it is not.

Increasingly, I have become very uncomfortable in the #DOC. Many PWD see the need to perpetually underline that a parent with a child with diabetes does not know what it is like to have diabetes. Relentlessly. Were that scenario to be reversed, and every parent to point out to people living with diabetes that they didn’t know what it was like to raise a child with diabetes, they would, quite rightly, be angry. Who benefits from that information being highlighted? Believe me, there has not been a second that has passed since my daughter was diagnosed that I have not been acutely aware that I do not know how this feels. Even when I was performing every single element of her care, without any verbal prompts or clues from her, I have never lost sight of the fact I am at the blunt end of every procedure carried out on her. The guilt I felt when dosing decisions I had made resulted in her being the one to bare the burden of the physiological fall out from that. The guilt I feel every second of every day about not being able to swap places with her. To protect her. To protect her sisters from all the crap that comes with this diagnosis. This was not the childhood I had hoped my daughters would all have. But it is our reality. And I refuse to wear my feelings of guilt and sadness on my sleeve, exposing my daughters to very negative emotions, which are mine, not theirs to be burdened with, just to satisfy some peoples’ need to assert I do not know what it is like. Yes, I am Pollyanna when it comes to making the most out of our reality, and we will celebrate the very, very many reasons we have to be thankful and our hearts full and to carry forward in optimistic cheerfulness. Because things could be worse. The missing photographs in their childhood of them with their Granny underlines that for all of us.

At some point in the online community, somewhere, an increasing number of PWD have missed the point about a parents’ participation in the community. The benefit that they can gain from having that input. Seriously, when adults complain that the children’s services are well catered for and that children seem to get all the access to the latest technology, who do you think drove those campaigns forward? Who are the most active group of people pushing for funding to improve treatments? Who campaigns tirelessly for equitable access to every health check to ensure all PWD are receiving optimal care?

All of these were started with parents. Raising their voices and challenging HCPs to up their game. Demanding that politicians invest in a way that makes a lasting difference, not one that will only impact on the length of a single parliamentary round of 5 years. We parents can’t make our children better. But the one thing we can do is fight for each and every one of them. Support them. Champion their cause. And our children grow up. And we don’t stop fighting for them then, either. That is the point at which the adult perspective becomes ours too. Which means those fights and challenges we were embarking on 10-15 years ago, now have a hugely talented skills set to be deployed for the benefit of adults.

I don’t like feeling “other” in a community where I used to feel included. It sucks.

So please, next time any PWD passes judgement on a parents’ choices or methods, try to have some empathy & remember that you may know nothing of the story that is at play in their parenting decisions. My hope is that you will never live their lives and walk their path. But being gentle, understanding and forgiving, rather than judgmental, goes a long way to helping them maintain their sanity, & crucially support their children, in this land.

For they too navigate the land of diabetes, whether you agree with that or not.

Motherless mother & grannyless girls – all members of the community.

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