Happy 10th Birthday, The Smallest Things!
Trustees celebrating 10th birthday. From left: Kerry Myles, Catriona Ogilvy, Sarah Miles, Lynne Peachey (Matt Wilkinson not pictured)
Milestones. As parents, we mark and celebrate them. From first steps, to first words, to first days at school. Parents of children born prematurely will have ‘extra firsts’ or ‘additional milestones’; the first hold, first nappy change, first day in a cot or first day without oxygen or a feeding tube. These first milestones shape a neonatal journey and as we celebrate a big milestone for The Smallest Things, I’ve been reflecting on how interwoven milestones and anniversaries are to the after NICU journey.
The Smallest Things has hit its own big milestone. The big 10 - double digits! We took our first steps back in September 2014, originally set up as a blog and Facebook page to raise awareness of the ongoing needs of children born prematurely and their families after NICU, and to shine a light on what was then a hidden world of neonatal intensive care.
Catriona's first cuddle with Samuel, born at 29 weeks, in 2011
Limbo time
It’s not just anniversaries and milestones that can be different for parents of premature children: time and the passing of time can feel different too. The Smallest Things was launched on the third anniversary of our ‘coming home’ day, right in the middle of that strange period between celebrating a birthday and months before what should have been my due date.
Each year we celebrate my 29 weeker’s birthday at the beginning of August. This year was a big one – we’ve hit the teens! And each year, without fail as the season begins to change, I’ll catch myself remembering that we were still in hospital this time however many years ago. And I’ll marvel at how we must have lost all sense of time while spending the summer in the hospital.
Later, as the anniversary of his ‘coming home’ day passes, I’ll find myself still in that limbo period of time, reflecting on a due date that is still more than a month away.
Samuel (born at 29 weeks) helps brother Jack (born at 34 weeks) with his new school tie
Lifetime membership
After launching The Smallest Things I was often asked, ‘will you always be a NICU parent?’ My reply has always been the same – yes. It’s a bit like joining a club you didn’t sign up for. While you’ll always be a member of that club, the memories of NICU fade and our experience of repeated readmissions to hospital after coming home seem like a lifetime ago now.
The raw emotion of grief for my lost trimester and my feelings of ‘stolen’ time with our baby are no longer with me, and the anxiety and flashbacks of beeping machines and blinking lights rarely make an appearance these days. But the anniversaries stay with you, and marking new milestones always seem to be that extra bit special.
The next chapter
Like The Smallest Things about to start the next chapter, my youngest son, born at 34 weeks, started secondary school last week. As he stood there in his new school uniform, beaming with a mix of nerves and excitement, I couldn’t help but feel an extra dose of pride, thinking about just how far he’d come since those early NICU days and everything we had been through together.
The Smallest Things has been on quite the journey too, growing almost as quickly as my own children! The original blog series (see some examples below from the website and Facebook in 2014 and 2015) highlighted a clear need for a charity that would highlight the lasting impact of premature birth and would raise awareness of needs of families and children born prematurely after coming home from hospital.
Power of the parent voice
We have continued, and will continue, to be led by parents who have lived experience of premature birth and are proud to have bought the voices of parents together to instigate real change.
From an award-winning campaign to bring about new Neonatal Leave and Pay legislation, to awareness stickers for Red Books and Prem Aware Awards for schools, we look back at our own milestones with pride and look forward with the same drive and determination to carry on making a difference for children born prematurely and their families.
Thanks to Catriona Ogilvy for sharing The Smallest Things’ story to celebrate its 10th birthday.