The story of Olivia Hope

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.


  1. oh, jenny...i love you. in the sea of grief sometimes the waves will knock you right over. i'm glad you are having good days already! if you need anything at all don't hesitate to ask. *HUGS*

  2. Fretzie...what a load to carry and then be able to pitch! What a rollercoaster. I pray that the hills will gradually get smaller and smaller and that your ride gets smoother. Hugs to you friend.

  3. Jen, I was delighted to hear your results. You had me on edge reading until you said the results were normal. Praise the Lord.
    I wish Hezekiah and Olivia were buried beside one another so we could have those cemetery cries together!
    Love you girl

  4. Thankful - with you - for the good news. I'm sure your emotions will be running the gamut over the next days, weeks, months - even years. It's encouraging that you can see the hand of God, yet also see when the evil one is trying to destroy your faith. Really. Sometimes it's hard to see that when you are in the midst of it and that can really throw you off center. As always, thanks for sharing - I hope you are healing as you share.


  5. God is so great! Since Olivia was born until now I was thinking " what if it turns out that our side is carrying this? What will that mean for you again and for me and nathan?" but God provided again! I'm so glad I have such a well grounded sister! Olivia's stpry has impacted so many people, probably more than we will know! The Lord isn't done with you and andy yet.
    There's a quote I like that says : Gods promises are like stars: the darker the night the brighter they shine
    Love you!

  6. Jen, As we were worshiping the creator of each of us and the universe yesterday I saw you and Andy over there. My heart rushed immediately went out to you as we were playing/singing 'How Great is our God' and even though I don't normally sing when playing, I couldn't help myself and the tears were just streaming down my face as I sang and sang, my drumming thoughts went on 'autopilot' knowing that He is Great and knows each one of us by name.

    You and your family are an incredible blessing to our fellowship. I am so thankful of your Godly decisions and choices and the beauty and love you have shown in caring for and loving Olivia. The all too brief time that you had with her, giving her warmth and love and the joy that you shared with her is etched into eternity and in more lives than you know.

    God has deeply blessed you and us from knowing you.