These thoughts have been rolling around in my head this last week and I had to put them down on paper. Please forgive my elementary attempt at hermeneutics. 


Joy and Sorrow has become the theme of my life. Two simple words to describe such complexity. It is the reason I love the movie "Inside Out". A revelation that joy cannot exist alone, it requires sadness to be relevant. Even at Waverly's funeral, my dear friend and pastor, gave a homily with this idea as a primary focus.

Many years ago when Waverly & Oliver were diagnosed I was angry (still am at times, don't get me wrong). My ability to pray was destroyed. I didn't want to pray for a cure. It felt hollow and naive. Genetics has played its part and there was nothing we could do to change that. I cringe when people say they pray for healing. I would ask instead they pray for strength, comfort, clarity, sleep, wisdom. This thought isn't to get in a theological debate about God's omnipotence.

As I was coping with diagnosis and a ferocious amount of anger, a very wise friend reminded me to keep the communication route open with God. She told me to cry, scream, and wail - He would understand. Years later, lots of twists and turns, wrestling with my faith, I find myself so grateful for that advice.

I was recently at a retreat. The speaker referenced the verses Romans 8:26, 27. It resonated with me and took me back to those dark days. 

"Meanwhile, the moment we get tired in the waiting, God's spirit is right alongside helping us along. If we don't know how or what to pray, it doesn't matter. He does our praying in and for us, making prayer out of our wordless sighs, our aching groans. He knows us far better than we know ourselves, knows our pregnant condition, and keeps us present before God." - Romans 8:26, 27 The Message

As I sat there staring at these beautiful verses , it occurred to me that instead of being reminded of this powerful message, I was constantly told to sit on the following verse, Romans 8:28. This is a verse that anyone who has darkened the door of a church has heard. And in my opinion it is one of the verses that can be used to belittle sorrow and shame hurt.

"That's why we can be so sure that every detail if our lives of love for God is worked into something good. " - Romans 8:28 The Message

I am in no way a biblical scholar. I haven't spent time studying Greek. But I have been in the church my entire life. And while I have learned songs, memorized the verse and heard countless referenced to "all things work together for good to them that love the Lord"; I have rarely seen the inclusion of the verses prior.

For years my prayers were wordless sighs, aching groans from the depths. And that is ok.


lesley said…
Well, I have been reading your blog since Waverly was little, noting that our girls shared the same Hanna clothes, somehow feeling a connection. Not sure why but it was definitely there. Then you moved to the DC area, close to my old hometown, McLean. Then I moved back to this area and we now frequent the same Childrens Hospital. And now my daughter, after 20 years, has a diagnosis. BPAN, a subset of NBIA. Long story short, I will lose her to a genetic condition. Not tomorrow but in the next few years. I will lose her to dementia and increasingly painful dystonia and parkinsons. Everything looks different now and I now understand why I was drawn to you and your family. Thank you for sharing your precious children and your private thoughts. You never know who is going to benefit. And feel less alone as a result. Thank you, Lesley, mum to Sarah.
Geoff Martineau said…
Wow, thank you Shannon.
Elise said…
Thank you for sharing this, it was something I needed to hear today. And it reminded me of this poem by Mary Oliver, about finding the way back to the Way.

After Her Death

I am trying to find the lesson
for tomorrow. Matthew something.
Which lectionary? I have not
forgotten the Way, but, a little,
the way to the Way. The trees keep whispering
peace, peace, and the birds
in the shallows are full of the
bodies of small fish and are
content. They open their wings
so easily, and fly. It is still

I open the book
which the strange, difficult, beautiful church
has given me. To Matthew. Anywhere.

by Mary Oliver

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