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on a new journey

Yesterday I had a blissful moment where everything seemed perfect and I almost forgot the large envelope that waited for me on the kitchen counter. I grasped at that moment, trying to forget the possibilities and uncertainties and predictions the envelope would release. Fleeting are perfect moments like that one -- I'll savor them while I can and will myself to open the envelope when I'm feeling stronger. For now, I'll describe what that (still unopened) envelope contains.
I got the call just over a week ago. A geneticist told me that my daughter's genetic testing had resulted in a diagnosis of Wiedemann-Steiner Syndrome or WSS. Today is the annual awareness day for WSS so it's fitting to begin opening up about this journey we've just begun. My initial reaction to that call was gratitude that we had an "answer," that we'd stuck with this prolonged and confusing process towards diagnosis, that so many of my daughter's symptoms now had a name. I felt validated that the grave behavioral challenges we've wrestled have an unusual explanation. I always sensed they did and felt people often didn't believe me (by the way, if you're reading this, you're probably not one of those people ;) ).
Soon I began feeling overwhelmed as I fixated on the mild to moderate intellectual disability associated with WSS. I ended up crying in my car at our church picnic. God, with great humor and grace, placed a friend in the car next to mine who also was crying. We had a good, ol' cryfest and prayer time together. My daughter has not struggled with a couple significant symptoms of WSS (e.g.; cardiac and digestive trouble) so the intellectual disability isn't entirely predictive for her but it probably explains her struggles at school. This diagnosis introduced an opportunity to adjust expectations and to hope against hope that our daughter will beat the odds in her own unique way. She loves unicorns and, given that there are only a few hundred diagnosed cases of WSS worldwide, I told my husband this confirms our daughter truly is a unicorn.
This post would be incomplete without a reflection on how this impacts my faith. As I write this, I'm listening to "Alabaster" by Rend Collective. The lyrics, "I will bow my life at Your feet," present a welcome exhortation. That's the posture I want to cultivate. I get overwhelmed by the questions around what this diagnosis means for the rest of our lives and how we ought respond. I serve a God who knows those answers and compels me to trust Him. I take in comfort Psalm 46:7 that says, "The LORD of hosts is with us; the God of Jacob is our refuge." I've been reminiscing on previous tough times I've encountered. They're hard and yet there's sweet communion and intimacy that comes with relying more on God's provision now than I do in the easy times. Misty Edwards' songs have been a welcome comfort in this season so I'll leave you with "Fling Wide."

P.S.: As I write this, I realize some dear friends are reading our news here for the first time so this last bit is for you. Writing is one of my ways of processing my thoughts and feelings. Writing this allowed me some space to sort through where I'm at. I'd love to talk with you more about it so call me. :)


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