Being a mum is really hard work. Any mum will tell you that and you really don’t get it (and probably can’t appreciate it) until you actually become a mum yourself. But being a mum to a child with additional needs is even bloody harder and it’d be a brave move to challenge me, or any other mum raising an atypical child on that one; I dare you.
I read something written by another mother last week about what it feels like when initially embarking on the reluctant journey of learning to parent a child with a diagnosis. She wrote:
“It felt like I lived on my own island. I was desperate to shout from that island, to write giant letters in the sand and call out ‘Anyone else? Anyone out there?”
Thankfully, I learnt that there was.
When I first started writing about raising Georgia, my now 9-month-old daughter who has Sotos Syndrome, I felt like I was standing on the waters edge of that island desperately staring through giant binoculars searching for other signs of life out there. Fortunately, it didn’t take long before boats started to emerge on the horizon, full of my people. Mothers, fathers, parents, all dealing with the exact same sh** my husband and I were going through; not your average first time parenting sh**.
As first time parents we had to grapple with things most parents never have to. Most first time mothers are probably feeling anxious about their child getting enough breast milk or latching correctly. I had to worry about whether my baby had enough stamina just to suck, or else be readmitted to hospital and hooked up to a feeding tube. While most parents sit back in delight as they watch their child reach those individual milestones ’when they are ready’ or ‘in their own time', we work around the clock with physiotherapists and OT’s to ensure our child will be able to reach those milestones at some point. Most other parents can talk about how many different words their child can say, for us it’s a case of not ‘how many’ but ‘if’ she will ever say them. And while other parents were casually wheeling their prams in to see the community nurse for a routine weigh-in and checkup, we were meeting with a geneticist to face some of the frightening statistics about our daughter’s rare condition: