Reflection

I’ve been thinking lately about those months when Olivia was a baby, when I was desperate for answers, when I was doing my own research, reading blogs, googling everything I found from other parents that might explain what was going on with my baby girl.

I first read the name Cri du Chat in the comments section of a popular mommy blog. I googled it and it brought up the 5p- society page.

I read the symptoms and looked at the faces of those kids with the syndrome and my instincts screamed that these symptoms were describing Olivia. But my mommy heart screamed back that she didn’t look like those kids. She had none of the physical features of those.

I apologize in advance if anything I write in this post hurts anyone but I want an honest account of what I felt in those months/years before we got O’s official diagnosis of 5p-. I want to be honest about how I tried to deny my own instincts. See, I’ve written before that when we got her diagnosis, I didn’t mourn because by then, Olivia was over two years old and the diagnosis didn’t change who she was. We already knew she was amazing and knowing she had 5p- didn’t change that.

But if we’d gotten her diagnosis in those early days, before we knew her, before we were already aware of how far she’d come from when she was a screamy, floppy baby? I can’t say I wouldn’t have been sad.

Heck, I was sad and in denial when I first read about Cri du Chat. I was relieved when the first and then the second and even the third doctor insisted there was no way that Olivia had 5p- because she didn’t have the facial features that usually accompany the syndrome. I liked the validation that my child is beautiful in a traditional way, that she looked ‘normal.’ I wanted that more than I care to admit.

I’m ashamed to admit that I said more than once to my mother that I was so glad that Olivia looks ‘normal.’ See, society can be cruel and I know that. And I want to protect my children from that cruelty. I want them to have all the advantages that come with being pretty. I admit that.

But something was obviously wrong with Olivia and even though several doctors agreed with me that she didn’t have the 5p- ‘look’ I knew, in my heart, that she did have it.

It just took a doctor who was willing to look past her beauty, willing to see the frail, sickly child in front of her, to agree to just run the damned test.

And at the time that Dr. S agreed to run the test she said that she’d call me with the results…unless it was something major, then she’d set an appointment so we could meet with her in person to discuss the results.

So when she called two weeks later to schedule an appointment, I was terrified. I think I knew what she was going to tell us. But I worried that there was more. I worried that somehow, I’d be to blame or that they’d want to hospitalize Olivia.

I know, it was totally irrational but I made Tom go with me to that appointment. I needed his moral support and I thought (again, irrationally) that even if the doctor wanted to keep Olivia (so silly!) that he wouldn’t let her. His presence gave me strength. We were providing a united front against whatever the doctor might throw at us.

Of course, on the two hour drive to the hospital, Tom grumped something like, “If she just tells us that this is who Olivia is and that there’s nothing to worry about, I’m going to be annoyed that I had to make this trip.”

I shrugged. I didn’t care if he felt he was wasting his time. I needed him and he was there. That was all that mattered to me at that moment.

Olivia has always been a good traveler and that day it was no different. She felt much better for this appointment than she had for the first one with this doctor.

Sitting in that room, waiting for the doctor, I felt like an eternity passed before she entered. And she confirmed what I already knew.

Olivia has 5p- syndrome.

Dr. S gave us a pamphlet but also warned us against research. And she set my fears to rest when she told us to take Olivia home and let her show us what she could do. She told us that love goes a long way when it comes to helping people reach their greatest potential. She gently told us that we were already doing everything Olivia needed from us. We were providing therapies, we were taking care of her basic needs, we were loving her.

Tom raised his eyes at me to let me know that his own fears had been confirmed. He was wasting his time. Ha! I still didn’t care. I needed this. I needed to hear what this doctor was telling me and I needed him to hear it too.

See, he didn’t care what was wrong with Livie. He didn’t need to know because in his mind, even without a doctor’s confirmation, we were doing all we could to help her.

But I wanted answers and I finally had them.

We also managed to finagle a spot on a neonatal cardiologist’s schedule that day. He was right there in the same office performing ultrasounds on pregnant women, examining their fetus’ hearts. There was a cancelation, he fit Olivia in for a twenty minute exam of her heart.

And it was fine, just like Tom was sure it would be. The murmur she had at birth was even gone.

So in the end, the day we got her diagnosis was a good day.

Mostly because I’d mourned the very possibility of 5p- so many months previously. I’d had a chance to face it and the fears and sadness and yes, even guilt that come with it before it was a reality.

Once it became a reality, it was no longer so scary, so big. It was just another part of what made our little girl amazing. So we took her home and she’s been showing us what she can do ever since.