Still

It is still the first annual Cri du Chat Awareness week.

Which is appropriate because Olivia still has 5p- syndrome.

When I was fighting to figure out what was going on with Olivia and her lack of muscle tone, her near constant reflux, her obvious delays, I worried myself sick.

It didn’t matter that this was my second child and I knew how to take care of a baby. I was sure there was something I was doing wrong, that I’d gotten lucky while caring for Alyssa. I worried that there was something acutely wrong with Olivia and if I didn’t find answers, we might lose her.

That right there, that fear that she might have some sort of regressive disease, was what worried me the most.

So when we finally, finally got the 5p- diagnosis when she was two years old, I was relieved.

I hope that doesn’t sound like a slap in the face to other parents out there who were devastated by this diagnosis. I don’t mean it to be anything like that. Maybe if we’d received Olivia’s diagnosis in those early days, weeks, months of her life, I’d have felt that sick, lost sense.

Instead, we got it when she was older, after she’d wormed her way into our hearts. The 5p- didn’t matter so much as the relief that this syndrome is something she can live with.

I was relieved that she was a bad as she was going to get. This was what we got. I felt like at that point, there was nowhere to go but up.

It helped that we had an amazing doctor at our sides. She told me we were doing everything right. The therapies, the big sister, the involved parents and grandparents. Olivia was getting the best possible start.

There is no cure for 5p- syndrome. Doctors can’t go in and splice the missing chromosome back into her DNA.

But while there is no cure, there is life. There is love and there is growth. There is joy and laughter.

One of my first questions upon hearing the diagnosis was whether Olivia could pass the syndrome on to her own kids.

Her doctor looked a little startled by the question. I realize why now. But at that moment, it didn’t occur to me that Olivia might not be mentally capable of having children of her own.

The doctor gently informed me that Olivia has a 50% chance of passing the syndrome on to her children. She paused and continued with, “If she’s capable of caring for children of her own.”

Oh…that was when I realized that perhaps my dreams for my little girl might have to be adjusted just a little in light of this diagnosis.

And that’s okay. While I haven’t put those dreams to rest completely, I have let new dreams form, dreams of her growing up, graduating from high school, getting a job she enjoys, being happy.

That’s my greatest dream for both of my girls. I want them to be happy.

And when I watch Olivia swing on the swing set in our backyard each evening while Alyssa chases Orville across the grass, I know that happiness is absolutely in their reach, no matter what their chromosomes number. 5p- can’t take that away from us.