I recently read another article on developmental milestones, you know the ones, they tell every thing your child should be doing at the exact age of 6 months or by 2 years and I’m thinking to myself – “Really, do all (or most) children at this age do every one these things” and “if they don’t do it – right at this very point in time – should I be seriously concerned? Is there something seriously wrong with my baby?”. I think these are totally normal questions and reactions from parents, prem parents or not.
The reality is, is that we all want the absolute best for our children and the thought that something isn’t ‘normal’ is scary, terrifying in fact! But for parents of prems this fear is far greater than it would be under normal circumstances. Most of us are told, in the NICU, that our children are at risk of cognitive developmental delays, motor skill deficits, social and psychological challenges, feeding and sensory perception issues, lung disease, eye disease – honestly the list goes on and on. We were told, when Madeleine was barely weeks old, that there would be a good chance she wouldn’t walk, wouldn’t talk and may need life-long care. At that moment I didn’t know if we would take even her home, let alone what life would be life like as time went on. It’s an assault of the senses those first few months and I feel like it doesn’t really get easier – it changes, that’s for sure, but I still feel this relentless sense of dread about whether her extreme prematurity will one day ‘catch’ up on her.
You often hear parents of full-term babies say “well my child didn’t do this or that by that age either” or “my full-term 2 year is tiny too” or “they all catch-up in their own time” and I know this is all mostly true – BUT the fact is that most children born full-term don’t have the baseline risk factors that our prems do. Missing a developmental milestone in a full-term child usually is an isolated consideration, for us premmie parents we are all acutely aware that it could be a part of a bigger (and scary) picture.
Having said all this, we also need to find a way, as parents, to live in the moment a little more I think. My (ex-24 weeker) prem is now 3 years old, and when I look back on my role as her Mummy, especially in the first 2 years, I wish so badly I had spent more time enjoying where she was at, and less time worrying about what she wasn’t doing and what this could mean for her. I was obsessed with her milestones, I researched every possible option we could give Madeleine to help her ‘close’ these gaps. I was, in truth, more like her healthcare coordinator than her Mum and this makes me sad. I genuinely wish I had spent more time just being her Mummy, loving every miraculous thing about her.
Finding a balance between identifying meaningful issues to ensure they get the early intervention they need and just being parents of these remarkable children is difficult and, at least for me, it’s something I have needed to learn how to do. No one teaches or prepares you for the road of parenting a prem, it’s a whole other level of parental stress and worry, but it’s also a profound privilege to have these tiny but mighty humans in our families.
You are all rock-stars and we are all in this together!
With love to all our premmie families, forever changed.
For my darling girls, all three of you