Hello precious friends and family!

I hope this note finds you enjoying some cooler weather and leaning into the beauty that seasonal changes bring.

Thank you for staying in the loop with us and praying faithfully. Please let us know how we can be praying for you this Fall?

Update on Emma: Progress + Seizures

Overall, Emma continues to thrive in ways we never dared to hope. While she’s increasingly behind for her age, she is still making some absolute gains. Her body is stronger, her sentences longer and more complex, and her happy spirit lights up a room. She’s loving cooler weather, “jumpy time” on the trampoline, her Cozy Coupe, and another semester of ballet. She does great in new environments, having visited her cousins’ churches twice in recent months, and she loves to cheer her people on with an encouraging, “Go, James!” or “Go, Annie!” over anything remotely impressive they do.

Managing her epilepsy is our biggest struggle with her health right now. Over the summer her brief absence seizures began to knock her off-balance with a sudden jerky motion. In the last month we have added a third anti-seizure medication to her morning and evening routines to try to get a handle. While the frequency has dropped from dozens per day down to maybe 5-10, the ones she’s having now are lasting longer and becoming increasingly severe. Would you please pray for calm in the signals of her brain and for wisdom and efficacy in the medications that should be helping her?

Emma Will Start Eye Infusions Soon

Emma’s neurology team is working with the Emory Eye Center to get her and the other CLN2 patients started on eye infusions to help prolong eyesight! We are so incredibly grateful to live in a place where teams of doctors (neurology, ophthalmology, pharmacy, CHOA IT, Aflac Infusion Center, etc.) are eager to pursue the newest treatments and willing to rearrange so many systems to serve such a minority of patients. Emma is one of four children who are treated for CLN2 Batten disease in Georgia at Children’s Healthcare of Atlanta (CHOA).

This Season in Our Family: Finding Some Stability

The last few months have held several changes, many gifts for our family, and finding some daily stability.

We welcomed Deacon into our family at the end of July, and she has been all-in from day one. She’s been a blast to have around and to introduce into the rest of our lives. She and Emma are special friends, and we are so grateful for her company and help.

Her presence and availability were immediately necessary as I fell and broke my elbow the week she moved in. We’re grateful I was able to avoid surgery. I’m in PT now and so grateful to be slowly getting back to some normalcy.

James and Annie started back to school at Rivendell Academy and are loving it again. We are so grateful for this incredible community.

We celebrated James turning 10 at the beginning of the month! He’s the best big brother, an enthusiastic golfer, and a brand new fan of Harry Potter.

There have been challenges and travel, but overall, Stephen’s work with Foundation Source / Charityvest continues to go well.

As we find some relative rhythms and stability with Deacon on our family team, no job changes, and no school changes we also find ourselves seeking discernment on deeper questions surrounding how we best navigate the whole remainder of our journey with Emma.

Reflection :: the healing of the nations

In this section, we share a snippet of the work God is doing in our own hearts in case it’s helpful to others.

In the beginning, when Adam and Eve first fell from perfection, they ran to the fig tree to borrow the biggest leaves they could find to cover their newfound nakedness (Genesis 3). Instead of reaching for the Maker, they reached for something made and stitched together a woefully insufficient garment. There was no undoing what they had done.

In the end, when the new earth and the new heavens are joined as one, there are leaves that grow on the tree of life that are given for the healing of the nations. The fruit of that tree will grow month after month, 12 kinds, 12 months, 12 seasons of perfect sustenance. The tree will grow by the watering of the presence of God Himself. And all nations will be invited to reach to the Maker for the covering of His blood.

This promise echoes as my heart’s ache for this season in my soul. We are surrounded by suffering, not even primarily our own. Families separated, cancer diagnoses weekly, chronic pain, lifelong disability, infant surgeries, senseless death, and the everyday toils of work in a world of arid ground.

So many of you who have read these words are in the midst of these seasons as well, whether for yourselves or those you love. Cling with me here? There is a day coming when there will be healing for the nations. Healing. From all that ails.

Even so, come, Lord Jesus, come.

(I’ve started writing again, every once in a while, over on a free Substack. It’s where I plant my tears. I trust He’ll bring a harvest.)

Prayer Requests

• For Emma’s seizures to subside and her adjustment to medications to be smooth and only beneficial.

• For eye infusion details to be finalized and for successful treatment of her retina.

• For discernment regarding the future of our family as we settle into this journey in a deeper way.

• For Katie’s elbow to heal and regain full mobility as quickly as possible.

• For many loved ones around us who seem to be dealing with suffering right now.

Resources We’re Loving

• Fatherland, by Kalley (music)

• A Spirituality of Caregiving, by Henry Nouwen (book)

• Weakness is the Way, by JI Packer (book)