‘It’s not fair is it? You did everything right.’
I can see her now in a crisp uniform with a soft sad face. Noone was expecting this outcome at the end of my perfect pregnancy. She was right, the midwife, she’d been with me throughout. I’d done everything right. By the book. Crossed the Ts and dotted the Is of my pregnancy with precision. Diet, check, supplements, check, exercise, check, pregnancy yoga, NCT classes the list goes on. Surely it couldn’t have gone wrong could it, because if you can do everything right and follow all the advice and attend all the check ups its supposed to go right isn’t it, otherwise what are they all there for?
She was wrong too though. Life changing things happen and It’s never possible to be in control of the outcome.
I don’t remember what I said. I make sense of those very early days as fragments now. Snips of conversation that I’ve thought about so much that they’ve been lifted out of their original context. I can still feel them though. I can remember the emotions around them and that they had an impact.
This one made me feel awkward and unsettled because no I didn’t think it was fair- but I knew by this conversation that it was down to genetics and there was no control to be had over that. I also understood that there were ways in which I was very lucky- my daughter and I were alive and at home after a relatively short stay in NICU.
But I also had a sense that maybe I didn’t do everything right- for weeks I’d thought I could feel my baby’s head high in my belly but was told that was the baby’s bottom and they were all lined up ready to come and meet us. Only after a long labour was Lucy found to be breach and her feet after her birth told the story in her posture- she’d been there a really long time.

So maybe I didn’t do everything right? Maybe I should have trusted myself more than the professionals, it won’t have changed Lucy’s chromosomes but we might have had a different and less traumatic birth story.
I know that this idea troubled me for a long time and that my own struggles with seeing our situation as unfair rather than just how it is left a deep impression on my own mental health ‘Why Lucy?’, ‘Why Us’ and ‘Why Me’. (And just in case you’re having the thought that it was us because we somehow had extra resources or that special children are given to special parents then please know that this is not an idea I find helpful or comforting.)
I often think about this statement. Was she trying to reassure me that I’d done nothing wrong? Or maybe reassure herself? Or process her own sadness about an outcome no one was expecting. I won’t ever know. I hope though by sharing this and my reflections that practitioners who read this will reflect on how and where they process their own feelings around their work. That we understand that holding onto an idea of fairness, and deservedness helps no one. If we keep the idea that some people are somehow deserving of a challenging and different life and others not, it impacts how we view, understand and, critically for practitioners, serve the disabled people and their families.
Next in ‘It’s Not Fair is it? You Did Everything Right.’ and other stories.
‘She won’t do her exams and she’ll have to live in supported accommodation’
4 Responses
I can still remember all the poor communication after giving birth, ranging from poor to absolutely wince-makingly terrible. I’ve often felt like making a list for healthcare professionals “NEVER SAY THIS!”
Hi Daphne,
Thanks so much for commenting. This is why the work on education is so important isn’t it. One of the questions I get the more I do this work is ‘but if I”m not saying this then what?’. I’m increasingly thinking it’s to do with taking the time to get to know and connect with a person’s humanity. Tough in busy healthcare settings but doable with reflection I think.
Thank you for sharing this Jo. As a parent of a 25 year old born with a rare syndrome I can resonate with so much of what you say. I shouldered the self-blame regarding “did I do something wrong during pregnancy” until we found out the condition was due to a genetic mutation. But it’s impossible to shake off the belief that I should have somehow predicted every illness thereafter – “there were clues, I should have seen that coming” when the clues were obscure and really only obvious in hindsight. However you learn to spot the tiniest things and these form the vast knowledge that you gather about your child. No-one knows your child like you do and practitioners should respect your knowledge. Many do, especially in children’s services. Post 18 it’s a much harder job. As for the “special children come to special parents” thing I’ve lost count how many times that or similar phrases have been said to me or used to describe me. You’re right – it is absolutely not helpful.
Thanks Carol for taking the time to read and make a comment. I had quite a moment recently when I realise we’re closer in time to adult services than we are from birth. I’m occasionally lifting my head from the sand when it comes to planning for adulthood! (It goes back in soon after at the moment.) Just need to keep trusting ourselves.