Saturday, April 10, 2010
God is still good
There is a twist to the story that I haven't shared yet. The week Olivia was alive we met with the genetics team to discuss what the lab found as far as her official diagnosis was concerned. Like you know they confirmed that she had Trisomy 13 but, in the doctor's exact words, there was a twist to the story. Olivia had a translocation. The non-doctory way to tell you what that means is that basically instead of a normal third 13th chromosome she had a 13/14th combination (I think). I'm still fuzzy to what exactly it is but in my understanding (again, I THINK) is that a part of a 14th broke off and had something to do with buddying up with that third 13th causing what they call a translocation. I need to do more research on it. Anyway you can imagine my blood running cold as I'm sitting there, after just having to have the what to do/what not to do discussion about treating my daughter, and hearing the doctor say that this translocation could be brand new in Olivia or it could mean that one of us has a balanced 13/14 which means we are healthy but would make this hereditary and raise our chances of another Trisomy 13 baby. It also means that it could affect our siblings and their chances of going through the same thing. I was, AGAIN, completely devastated. Dr. Z suggested that we both have blood work done and we agreed since the new responsibility to our families was added to the equation.
I'll pause here and tell you that our blood work came back normal! However, I didn't find this out until yesterday. I have been living the last several weeks, actually months, in fear of what I thought I knew. I thought for sure they would find one of us to be carrying it. I just knew it. I've been praying about it, crying about it and half sick over the fact that I could, and in my mind already did, have a greater chance of going through this again. Being hereditary would only mean that instead of a one percent chance of recurrence I would have a five percent chance. Not big but still way too high for my taste! And I read later it would also mean that I would have a twenty percent chance of spontaneous miscarriage. Having already had one miscarriage several years ago I was sure it was connected. This was my life now, so I thought.
We hadn't heard back and I dwelled on whether or not I should call and find out. Did I want to know? I finally bit the bullet, picked up the phone and sat there feeling like I was going to puke until I heard the genetics counselor say the labs were normal. I bawled, but I'm sure she is used to that! She said that with a translocation the chances are actually smaller than the normal one percent that everyone has. "The chance of it happening the first time or again is as close to zero as we can get without actually saying zero", her words! Of course I'm delighted but I find this to be very sobering. So I basically had almost a zero percent chance of this happening? I really feel like God was saying to me "I chose YOU. This was 100% my plan for you." There are so many emotions that come with knowing that. I also feel like I can really allow myself to heal now. I don't have to live in fear and this chapter is closing. I can breathe and move forward.
I'm still doing ok. I have good and bad days. Today was a good day. Yesterday was a great day after hearing that news until Satan attacked and I found myself driving to the cemetery in the dark, kneeling on the mud and crying crying crying until I couldn't cry anymore. Funny how he got me real good right after that phone call that left me feeling very happy and comforted. He's a real stinker like that.
I want Olivia and everything reminds me of her. I miss her so much and I know I will always feel this way. I know it will get better but this will always be part of my life. SHE will always be part of our lives.