Denial

During O's first year, I lived with quite a bit of denial. Our lack of a diagnosis allowed me to do this. I didn't have the accept that there was something wrong with my child right off the bat.

Heck, even her doctors all insisted that she was fine, just a little delayed. They all said she'd catch up.

And like every parent, I wanted to believe that.

When I first heard of Cri du Chat in the comments of a fairly popular blogger, I immediately googled the syndrome, reading the symptoms, looking at all the pictures.

Here is an excerpt from the blog I kept at the time over at www.shareyourstory.org. It's a site hosted by the March of Times.

"This is going to be kind of a rambling, thinking-out-loud kind of post. Please feel free to skip it.

The more I read about Cri du Chat (or Cry of the Cat) the more I wonder if Olivia has it. We have a well-child check up on December 1 with her regular pediatrician and I'm going to ask for a referral to a developmental pediatrician at that time. Will the developmental ped be willing to do genetic testing to see if Olivia has this chromosomal disorder? Who knows? But I want to be prepared either way.

So what is Cri du Chat? It's a chromosomal disorder in which part of the short arm of chromosome 5 is missing. It's medical label is 5P-.

Here are the symptoms. Again, this is me thinking out loud. I'm going to put next to each symptom whether or not I think it applies to Olivia, more for my own benefit than anything.

-The first thing that triggers doctors to even consider Cri du Chat is when an infant's cry sounds like a cat. We most definitely had that one. We were asked by strangers if we had a cat in the carseat when we took Olivia out as an infant. I have to wonder why not one of the many doctors who saw her ever considered this syndrome.

-Feeding problems because of difficulty swallowing and sucking - O didn't really have a lot of feeding problems other than the reflux. She was able to suck and swallow just fine, it all just came back up too much and too often.

-Low birth weight and poor growth - Definitely had the low birth weight thing. The growing? Well, once we got her reflux under control, Olivia started growing just fine and has always been in the 25% for weight and the 50% for length/height.

-Severe cognitive, speech, and motor delays - She obviously has the motor and speech delays but the cognitive? I don't think so. She's pretty aware of everything cognitively.

-Behavioral problems such as hyperactivity, aggression, tantrums, and repetitive movements - Olivia is definitely NOT aggressive or hyperactive. She rarely has tantrums. The only repetitive movement I can think of is that she sometimes likes to bang her head against me. But I think that might be because she likes the way I react when she does it.

-Unusual facial features which may change over time - unless her features change a lot, Olivia doesn't have unusual facial features (maybe I'm seeing them as a mother, though? Anyone who has seen O, do you think she has odd or off facial features?)

-Low set ears - I don't think her ears are low set. Am I just trying to fool myself?

-Webbed fingers and/or toes - Her fingers and toes are all unwebbed.

-Excessive dribbling - This was never a problem. And believe me, I come from a family where babies have been known to drool through multiple bibs a day.

-Constipation - Yep, but now that we've increased her water intake, the constipation is abating.

-Low muscle tone - Definitely have this one.

So, with all of this? Who knows? The thing is, even if she does have this, it's a chromosomal disorder. There is no cure. We're already doing everything that every website suggests can be done for kids with this syndrome. But knowing is half the battle, right? Once you know what you're fighting, you can wage the war."

I feel like, because her doctors missed this for the first two years of her life, I was able to cheat that sense of loss or anguish that a lot of parents feel when their newborn is diagnosed with something like this. Obviously, I didn't want to believe she had it, even with so much of the evidence pointing out that my intuition was right. But I was able to deny the diagnosis without denying my child. At the time I started reading up on 5p-, it wasn't inextricably tied to my daughter. It was some syndrome I'd found online. I could read the symptoms without seeing Olivia.

By the time we did get the diagnosis, Olivia was Olivia. I didn't have to worry about the unknown because she'd already proven a lot of the 'facts' wrong.

I don't know. Why am I even pondering this? I feel like I cheated. Like I didn't have to mourne the loss of my ideal. By the time Olivia was two years old and we got her diagnosis, SHE was my ideal. I knew without a shadow of a doubt that she was amazing, just because she's Olivia. The diagnosis didn't make her any less amazing. It didn't diminish my love for her or my dreams for her future. It was just the results of a test, a label, if you will.

Have I sometimes wondered how O's diagnosis might affect her later in life? Of course. How could I not?

Have I also worried about how it might affect Alyssa? Definitely.

But I watch them together and I know that they'll always be there for each other, supporting each other, driving each other nuts. And Alyssa will always be the big sister. I pray that her sister won't need constant care even as an adult, but if she does? Well, obviously, I'm going to live forever and provide that care.

Okay, kidding aside, all siblings affect each others' lives. They just do. Chromosomes might make some siblings a little more needy than others, but...they don't affect the love.

In the end, it's the love that matters the most. To all of us.