Hello precious family and friends,

We pray you are well in this Easter season! The hope of Easter stretches out before us in a new and deeply necessary way this year. We received Emma’s diagnosis 8 days after Easter in 2024; we were grateful to celebrate our last “first” since that life-changing day, and how fitting that the one thing left in our first year with this death was the celebration of death’s defeat. May your heart find hope at the borrowed tomb as well.

We’re grateful you’re here for updates and prayer. As always, please let us know how we can best pray for you.

✨Emma’s Make-A-Wish Trip! ✨ 

Our last family update reached your inbox just a few days before we left for a two week explosion of once-in-a-lifetime family fun, and it was unbelievable. Thank you for praying us into and through that special time!

We’re especially grateful to the Make-A-Wish Foundation in Georgia and the many supporters who made our time at Disney World an absolute dream. We stayed at the Give Kids The World Resort and were so blessed by the extravagant care and compassion we encountered there. Give Kids The World is run almost exclusively on volunteer power, recruiting for 1500 volunteer shifts each week! It was such a beautiful and restful place to simply enjoy each other.

Emma, James, and Annie LOVED getting to visit all four parks at Disney World throughout our first week in Florida. Emma delighted in meeting her favorite characters, and James and Annie grew into the ultimate thrill seekers. Leila was an incredible help, and we had a blast introducing her to one of the most American things you can do in America. We ate delicious food, walked a LOT, and enjoyed every minute!

We’re also especially grateful to a very generous friend who invited us to use his family’s beach home as a place to unwind after the whirlwind of Disney, and BOY did we need that! We were spoiled rotten with beautiful views, a quiet beach, and treats from Trader Joe’s. It was a gift to get to slow down and process and just rest together before heading back into the hustle of real life.

I’m not really sure what else to share here other than to say it was deeply humbling and refreshing to spend two weeks resting on the extravagant generosity of people we’ve never met. We didn’t realize how hard we’d been pushing over the last 12 months until we finally slowed down. This trip could not have been more timely or treasured. Thank you so much for praying for us the whole time. If you’re eager for more photos, here’s a little montage curated by iPhoto. 🥰

Infusion Side Effects

Unfortunately, when we reached home after Emma’s infusion the day before we traveled to Florida, she went to bed with a fever over 102. After a quick trip to the pediatrician ruled out all the major viruses, we realized her infusions had likely begun to cause side effects, and this theory has been proven true over the last several treatments. It’s actually quite typical for these effects to be delayed in their onset; Emma’s started ~infusion 16.

We’ve been learning to manage the fever (and possibly aches and pains) with a steady rotation of ibuprofen and Tylenol, and we’ve also been battling nausea/upset stomach with Zofran. Each child receiving enzymes has a different experience, but we’re hopeful this could be a short season.

Em is also experiencing more discomfort and sadness at each infusion. Please continue to pray for special grace on these infusion days, for Emma’s body and for her mind and heart. Her next infusion is tomorrow, April 24!

Reflections on One Year of Diagnosis

We woke up on Monday, April 8, 2024 much like we had every other day of our lives. It’s a date you may well remember as much of North America paused midday to observe the solar eclipse. Later that night our neurologist gave news that darkened our lives.

From the shadow of the moon to the shadow of death in a matter of hours. And suddenly this valley has already been our home for one full year.

But even as those words leave my heart, I know it’s not really my home. In some way, my tent feels forever pitched in this valley, and I’ll be here until the face of Jesus is finally revealed, and yet the psalmist never beds down in the valley of the shadow of death…

“Even though I walk through…”

This pilgrimage to Zion is a journey, an active movement through the sure and stagnant and steep travails of sorrow. And at the same time, maybe I make the most progress when I feel like I cannot take another step…and what seems like a grief splayed on the bedroom floor is actually a carrying through. I’m a rightly limping lamb and He is a wildly sacrificial Shepherd who is here.

Jesus, You. are. with. me.

And so I say here with all my heart, here at the end of one year knowing our baby girl has always been sliding too quickly toward her earthly end, Jesus has been only kind. He has only been faithful and patient and gentle and enough. And somehow, with one whole year of hindsight to look back on, I can see more joy than I’ve ever known before. Only one thing satisfies in the valley of the shadow of death…the Presence of the Good Shepherd.

Thank you for pressing us deeper into trust through your own presence, your willingness to be His hands and feet here in the valley.

Prayer Requests

• For Emma’s continued adjustment to enzyme therapy, that side effects would lessen, and that she would be filled with supernatural power and grace to weather her infusion days without fear or trauma.

• For sleep and energy. This will always be a request, with ebbs and flows of severity. If you think of us at night, please pray for sleep.

• Praising the Lord for some degree of life stabilization in the last month or so. With Stephen’s work transition progressing, Leila’s presence normalizing and empowering our daily life, and Emma feeling better and better, we are so grateful to be finding rest and a sustainable pace of life more often.

• At the same time, we are navigating suffering and sorrow in several deep pockets of our community right now, both inside our family and beyond. Please pray for sustaining grace for the people we love?

• And ultimately, for death-defying joy. This is the calling the Lord continually puts on my heart for my own soul and for our family. Would you pray this for us? Death has lost its sting; we want our whole lives to be grounded here.

Resources We’re Loving

• Loved to Life by Ann Voskamp

• What An Awesome God by Phil Wickham

• The Pour Over — news coupled with hope

Thank you, thank you, forever thank you for being here and walking with us. May your Easter season be simultaneously heavy and weightless with death-defying joy.

You are so loved by our family.

but Jesus loves you most,
Katie