Irritated

I must admit that I have been feeling a bit irritated lately. After our hopeful visit with the clinical geneticist who left the appointment telling us that she had some "very good ideas" on what Camille might have, we got a call from the genetics counselor last week who told me that Camille has "officially stumped their genetics team." Huh? Excuse me? Did I hear you right? Apparently, the clinical geneticist that we had met with spent the week after our appointment researching her "very good ideas", and came up with nothing. As sort of a last ditch effort, they want to do one more test (more on that below), but otherwise, they have essentially given us a diagnosis of "unknown genetic condition". They encouraged us to have Camille examined by other geneticists in the state to see if they can determine what her condition is, and we are planning on doing that soon.

The final test they would like to do is a skin biopsy, and what they are looking for is something chromosomal. Yes, chromosomes. Again. I feel like we are going backwards in some ways. Apparently, most chromosomal syndromes can be detected on a blood test, which Camille has had. She has actually had two separate chromosomal blood tests, one from Scott & White and one from Cooks. Both came back normal, even on the more sensitive microarray test done at Cooks. But, sometimes, if the chromosomal problem is mosaic (meaning not present on all of the cells, but only on some of the cells), then the problem will not show up on a blood test, but will show up on a skin test. Since everyone originally was convinced that this was something chromosomal, they want to check to make sure that it isn't, hopefully once and for all.

So okay, we'll do the skin biopsy. Fine. That's not what has me irritated. What has me irritated is that I want some answers, and I'm not getting any. And it is looking like I may never get them. All I'm getting is a "Well, we'll try this one last test", a test which it really seems like no one thinks will turn up anything.

And nothing that any of these genetics people (nice as they may be) are saying is helping. I don't care if they are only able to diagnose about 50% of children who are suspected to have a genetic condition. This is my child we are talking about. My sweet child who has been poked, tested, scrutinized, and evaluated countless times, apparently for nothing. Statistics are meaningless when you are talking about your child.

And I guess what is really at the root of my irritation is that I feel like I have already accepted so much, and I just plain don't know if I can accept this too. I've had some real long conversations with God lately that go something like this: "Okay, God. I've accepted that my child is different. I've accepted that she may never do most things that other children do. I've accepted that she will likely have health problems her whole life. And I even have a good attitude about it. Well, most days. There are the days when I see those babies who are around Camille's age, with their bowling ball sized heads, and their giggles and smiles, and they are drinking from their bottles or nursing with no problem at all. Those days are hard. Most days, though, I'm good. But now this? Now I have to accept that I may live my life not ever knowing what makes Camille the way she is? I may have to wonder every day how her 'unknown genetic condition' is going to affect her life expectancy, her health, her development? I'm going to have to tell everyone we meet who gives me a curious look when I tell them that my newborn-looking baby is really a 6-month-old that 'She has something genetic, but we just don't know what?' That's what I have to accept now?"

And so, I'm irritated, and trying desperately not to be. I know that ultimately, I will accept whatever happens because I have to. But it's all just really hard right now. It's a darn good thing I have so many things that take my mind off of this.

Things like Camille rolling over (and over, and over, and over!);

Things like Henry saying, "I love you, Mama", at random points throughout the day, totally unprompted, and then when I ask him for a kiss, he'll get a gleam in his eye and kiss me on the knee or the arm, obviously thinking himself to be completely hilarious;

Things like having Bones-watching marathons with my hubby (If you have never watched this show, you are missing the best show on TV! Go out and rent the first 4 seasons on DVD, and I promise you will be addicted!);

Things like returning to church after such a long absence, and feeling such amazing support and concern from our church family;

Things like sitting in the dark, looking at our Christmas tree that Henry so sweetly "helped" me decorate, thinking about the birth of my Savior, and the sweet peace that His coming brought to the world, the same sweet peace that He gives me everyday, even through all of this.

And really good things like that always trump even the most nagging irritation.

At least on most days.