After watching an interview on Katie with Sam Berns and his parents, Dr. Scott Berns and Dr. Leslie Gordon, Katie asked Dr. Gordon, Sam’s mom, “When did you know something was wrong with Sam?” (Sam has Progeria but like Olivia is more than 5p- syndrome, Sam is so much more than Progeria.)
And the answer was something like, “Almost from the beginning.”
After Olivia’s rough start, I was so happy to get her home. Her eleven day NICU stay was tough but once it was over, I thought we were going to have only sunny skies ahead of us.
But then, just by mothering this amazing little girl day to day, I knew. I didn’t know what I knew, but I knew that there was something different about her.
Her doctor tried to tell me I was a nervous mother. He reminded me that I couldn’t compare her to her older sister, that every baby is different.
I knew all that. Just like I knew that Olivia was different in a way that wasn’t necessarily typical. When she was about three months old I started googling things like “symptoms of autism in infants” and “symptoms of cerebral palsy”.
There was no one thing I could pinpoint that made me worry but the worry was there, a niggling at the back of my mind, something telling me to keep an eye on this baby and remember everything.
I started rereading my copy of What to Expect in the First Year. Sure, I had already parented a child through the first year, so I knew a lot of what should have been happening but Alyssa did a lot of the gross motor things really early so I didn’t want to skew my expectations.
But…Olivia wasn’t meeting any of the milestones. She wasn’t making eye contact, she wasn’t smiling. She wasn’t pushing up when doing tummy time. She just laid there, like a lump. She was an adorable lump but still a lump.
When she did finally start smiling and response to something we actually did, there was much celebration in our house. When she started actually interacting, making eye contact, reaching and yes, even controlling her own head, I was thrilled but still…I knew that she was more than ‘delayed’ as her doctor put it.
I chased answers. I pushed and asked for referrals, all the while trying to find ways to treat the symptoms before we even knew what was causing those symptoms.
Because I knew.
Sometimes, you just know. Even when you aren’t sure what it is you know. You know there is something to know.