Thursday, November 19, 2009

Moving toward an answer...maybe...

We had our meeting with the clinical geneticist yesterday. I have been picturing what this meeting would be like for over 2 1/2 months (that's how long we've had the appointment), and I can definitely say that none of the scenarios that I had played out in my head ended up occurring. I guess I was thinking that the clinical geneticist would walk in and say, "Oh, I know exactly what this is!" or "I think it could be this, this, or this, but we need to test and see". And then there's the worst scenario that I had played out in my head, the one where the clinical geneticist walks in and says, "Oh, she doesn't have something genetic--she is the way she is because you ate lunch meat during your pregnancy! Shame on you!"

No, seriously, I have still held onto that irrational fear that Camille is having all of these difficulties because of something I did during my pregnancy. Was it because I ate lunch meat sometimes? Or was it because I drank a Coke occasionally? Or was it because I carried Henry around for the entire pregnancy? Or because I possibly had a fever at the beginning of my pregnancy? Or because we had such a stressful, sad year where I had done more crying than I had my entire life? I have literally scrutinized every possible thing that I could have done during the pregnancy to cause Camille to be born with the issues that she has, and I have agonized about the possibilities. Even though doctor after doctor has told me that it was nothing I did, I still have not been able to let that go.

I think I finally can now. Although the appointment did not go the way I pictured it going, and although we are still left without a diagnosis, this geneticist and her 30+ years of experience has finally relieved me of my agony about "causing" this for Camille. In a nutshell, she said that she definitely thinks that Camille has something genetic, meaning that it was some mutation on some gene that caused this, and nothing about the pregnancy. Nothing. She also said that she thinks that she has seen one other child in her experience with features similar to Camille, and that she has some ideas on what syndrome Camille could have, but she wants to go back and do some more research and consultation before she tells us anything more.

I guess you could look at this two ways, and Jason and I of course did. Jason, Mr. Positive Optimist, thought that she could know what it was, or maybe didn't really know, but wanted to do some more checking before telling us something and having us get our hopes up, or worry prematurely, about something that might or might not be. Maggie, Mrs. Worst Case Scenario, thought that it meant that she thinks Camille could have something horrible, and she doesn't want to tell us yet until she knows for sure because it is so awfully terrible.

Yeah, let's go with Jason's view instead. So, we are waiting again, which is at least a familiar place to be. We'll let you know when we hear anything further.

Thank you for keeping up with Camille and her story. As I told Jason as we ate lunch after our appointment yesterday, it absolutely blows my mind that my child could have something so rare that no one knows what it is, or that a geneticist who has seen thousands of children might have seen one other who looked similar to Camille. Some might see that as a "poor us" sort of thing--why should we have to have such bad luck? But, although I have many "poor us" moments, that's really not what I think when I think about Camille having something so rare, so different, so unlikely. I seriously think, "Wow! God has given us such a unique child. A child who is different and special, who is just the way she is supposed to be, just the way she was fearfully made. A child who will bring us blessings and joy that very few others get to experience." And as we move toward a possible answer, I hope to keep that thought central in my mind and heart.

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