Still Olivia

I’m wearing striped socks all week long to honor Olivia and continue to share how Cri du Chat has affected our lives. (Oh, who am I kidding? I pretty much always wear striped socks. But this week, it's for Cri du Chat awareness week. Yeah, that's why I'm wearing them.)

I’ve said before that I’m glad we got Olivia’s diagnosis when she was two years old. I know others are grateful to get a diagnosis at birth or even before because they can start with therapies and interventions.

This is not the wrong reaction. My reaction isn’t wrong either. We all have our own reasons for feeling the way we do.

I am glad we got O’s diagnosis later because it gave me a chance to know her, my sweet girl, before I knew anything about her diagnosis. I never had to grieve the child I thought I was having because she was right there.

When Olivia was born nine days past her due date and needed to spend eleven days in the NICU, I learned pretty fast that she was going to be unpredictable. She fought her swaddle even at two days old. She cried her sad little cat cry at the drop of a hat. I could be in the cafeteria for a small break from the monotony of sitting by my baby’s bed and another NICU parent would see me and say, “I was just up there, your baby was crying.”

Everyone in that place knew her cry.

But it didn’t signal anything to any of us, not me and my husband, not the doctors, nurses, therapists already in to see her. She just had a unique (to us) cry. My mom and I even mused about what her voice might sound like in a few years.

Then she came home and she kept crying. She cried and cried and cried for months until we finally got her on medication for reflux.

During the few and far between moments when she wasn’t crying, I started researching things like, “early signs of autism” and “what if three month old isn’t making eye contact?”

I knew something was up with this baby girl but I didn’t have any answers yet. She was small, she was angry, she was in pain. She rolled early, at about six weeks. But by six months, she still wasn’t holding her head steady.

When she was nine months old, I asked for an MRI because I feared she had cerebral palsy. She seemed to be weak on the right side. She was finally making eye contact at that point but she wasn’t sitting independently and there was absolutely no sign of her thinking about crawling.

Her MRI came back fine. Her brain was not damaged in any way.

At that point, I’d Googled her symptoms and Cri du Chat came up several times. I suggested it to her pediatrician and to the chiropractor we were taking her to, just to get a ‘professional’ opinion on the idea that she might have this.

They both declared her ‘too pretty.’ I think this is actually kind of insulting now. All kids with 5p- syndrome are beautiful. So O doesn’t have the typical features, so what. That doesn’t make her prettier than any other child with this syndrome.

By now, we were treating her symptoms even without having a diagnosis. She was in physical therapy, developmental therapy, speech therapy and occupational therapy. Each therapist came to our house weekly. We were so lucky to get amazing therapists on the first shot.

And Olivia continued to be sweet (now that she wasn’t in constant pain and screaming for hours on end) and she grew, she was thriving. She was making us fall in love with her each and every day.

So when we finally got her diagnosis, it didn’t really matter. She was still Olivia, still our silly, sweet, funny, sometimes extremely loud but always loving, cuddly little girl.

I know parents sometimes mourn the child they thought they were having, especially when they get their diagnosis early on. I get that. I don’t begrudge them their grief.

I just feel lucky that I didn’t ever experience it because she’s always just been Olivia. And now we know why she’s always felt extra special to us. She’s doing what most of us do with less DNA. If you ask me, that’s a pretty amazing super power.