Monday, October 27, 2014


I can't believe that after 12 years of wondering, agonizing, and planning together, we might finally get the SCA3 test results tomorrow. I say *might* because this process has involved so much waiting, it's hard for me to imagine there won't be further delays. So it's possible that after all my melodramatic pontificating, tomorrow will be just another day. But if it's not, I'm hoping for the best and preparing for worst. So here are a few of our next steps as preparation if things don't go as hoped for:

- Ask the genetic counselor for a retest with another lab to confirm the results.
- Provide the results to the endocrinologist and genetic counselor so that the genetic probe can get set up. I'm still not 100% sure how I feel about IVF but I can at least get the process kicked off while I think about it.
- Adjust our health, life, and long term insurance policies accordingly.
- Start house hunting for a home without stairs for easy accessibility. Ideally, we'd like a ranch style home but that comes at a huge premium in the Bay Area so we'll have to see what we can manage.
- Pray for peace, hope, and understanding to maintain our spiritual grounding and mental sanity.

Jeff worries that our communication might break down and I'll shut him out. When we had our first serious talk about SCA3 as college juniors, I struggled with what I should tell him and what I should keep to myself. I was afraid that whatever I said might compel him to get tested for all the wrong reasons. I desperately wanted to know if he had SCA3 but I didn't want him to get tested and possibly ruin his life if he couldn't handle the results. There was a one hour train ride where we sat in silence because I couldn't trust myself to say the right thing. The memory of that train ride still haunts him. I had to remind him that I wasn't shutting him out, I was demonstrating a tremendous amount of maturity for a 20 year old under a lot of pressure!

It's hard to imagine that after tomorrow, our lives could be changed forever. I wish it didn't feel so binary - that it has to either be great news or terrible news. There is no in-between. It feels like my heart is about to burst from all the suspense of waiting. Hoping that it doesn't drop, break, and shatter from bad news. Feeling too scared to anticipate good news. I don't know if I will be ready to talk about it right away. We'll just have to take it one day at a time.

Woolamai Beach, Australia, 2011
I normally post random travel pictures to accompany these serious blog posts but this one is oddly appropriate. It seems like Jeff is facing the great big unknown all by himself but it doesn't mean he's alone - I'm behind the camera taking this picture. And I've got his back.

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