Maybe it was because Lyla was my second baby and I was more relaxed, maybe it was the intense sleep deprivation. I only remember once thinking ‘oh, my friend’s baby is playing with a toy, Lyla doesn’t do that’, before her grandparents took a deep breath and suggested there might be something up with Lyla – aside from the insane reflux, the crying and the lack of sleep.
When I had Blair I read every single parenting/baby book I could get my hands on, checking the milestones, looking up every new thing. There was none of that business with Lyla. Like many parents I was way more laid back second time around, all babies are different, they all follow their own development path and they meet milestones at different times when they are good and ready, not necessarily when they ‘should’, blah blah blah.
I had a normal pregnancy, I puked, I was exhausted, I had so much heartburn I swear I thought my baby was going to be born with dreadlocks. At 38 weeks the obstetrician confirmed that Lyla was in the transverse position (lying across my belly) and that I would have to be admitted that day. If my waters broke, the cord would be compressed and they would only be able to deliver my baby alive if I was in hospital when it happened and I would need a c-section. So I cried all the way home to pack. I cried because I was sad for Blair who was only 2.5 and he wouldn’t understand where I had gone. I cried because I didn’t want a needle in my back, I cried because I wanted to be in my own bed. I spent a week in hospital before my c-section at 39 weeks, even before she was born Lyla was making me learn to give up control.
The epidural turned out to be a breeze and Lyla was born to the sounds of U2 singing Beautiful Day, (shout out to the awesome anaesthetist who picked the tunes). She was perfect and the recovery from the c section was surprisingly good. I didn’t breastfeed (perhaps that’s for another post) but I had to try every kind of fancy teat known to man before finding that the old fashioned style was the only one that she could latch onto. I had no idea at that time that this was a sign of things to come.
Lyla slept through her christening, she slept for hours – so long as she was in her pram or someone held her – fabulous at 3am. Babies are hard, exhausting work, that’s a given. It’s like being ruled by a loud, extremely cute dictator who pukes on you several times a day. It didn’t help that Blair had been a dream baby, he was the ultimate self-raising child. The boy slept for 12 hours a night with a feed at 11pm from 6 weeks old. Yup, 6.weeks.old. I swear I was so afraid that my new mummy friends would hate me that I didn’t tell anyone for nearly a year!
So when it came to Lyla I was lost. This was normal I assumed. Even when my parents suggested that there might be something wrong with Lyla I was very resistant to following this up. For a while I was defensive, maybe the crying and Lyla’s general unhappiness was just part of Lyla’s personality and I kept saying we would just have to learn to accept that. But the puke, oh my god the puke was biblical. It was only when a friend who was a paediatric nurse suggested that it wasn’t the norm that we went to see a paediatrician. We left that appointment with a prescription for reflex medicine, a referral to a neurologist at the children’s hospital, (just incase…), and a follow up appointment with the paediatrician a fortnight later.
During the next two weeks Kris and I did some research using Dr Google and both came back with cerebral palsy. That poor paediatrician must have been dreading telling us and she seemed very relieved that we had come up with the answer ourselves. Truthfully I don’t remember much about that time, its all a bit of a blur. There were lots of appointments and we quickly learnt that her cerebral palsy was very severe. Initially I had said that so long as she could walk with assistance and be independent and speak so she could be understood that it would all be fine. Over the next few appointments we slowly learnt that none of these things were likely to be in her future and the world didn’t fall apart, the sun kept rising and we kept on keeping on.
It would be another 6 months before we found out the reason why Lyla was born with cerebral palsy. An MRI revealed that she has a rare brain disorder called Polymicrogyria. They don’t know why. We might never know why, it’s just one of those one in a million things. It doesn’t bother me that we don’t know why. Sometimes you don’t know, sometimes you don’t see it coming and sometimes you see it before everyone else does. Either way we all end up in the same place. We all end up doing our best to make sure our kids live their best and happiest life possible.