Happy New Year, family and friends!

It’s been a busy minute since we’ve shared a wider update, but there are a handful of kind provisions we’re eager to pass along to you. As always, we treasure your replies and would love to know how to pray for you as well.

How is Emma doing since our previous update?

We’re so grateful for a medium in which to give a full report on how Emma’s doing. So many ask, knowing it’s a complicated question, and we’re all leaning on grace for those micro moments. But it’s a blessing to share here that Emma is truly thriving right now, all things considered. Praise God!

Most notably, we’ve really seen a brightening in her personality and a strengthening in her body over the last two months as she hit the initial point of stabilization on enzyme replacement therapy. We’ve been told 6 to 12 months is when her brain will truly begin to feel better, and it’s proving true. We’re so grateful! Her stamina and focus are improving, her balance and endurance are increasing, and her personality is at its best in 11 months.

Sleep is still a little off of the schedule we would prefer, but sustainable. Em is sleeping 8:30p to ~6a on her own most nights now, as well as napping ~45-60 minutes most afternoons. We’re all in a much better place now than we were 6 months ago. Thank you for continuing to pray toward this end.

Unfortunately, Emma is still having 50+ “micro” seizures every day. If you spend any amount of time with her, you’ll see her eyes roll back just briefly and occasionally watch her almost lose balance at least a few times an hour. We’ve added a new epilepsy med (Briviact in addition to her Onfi) in the last week to try to minimize these episodes. Please join us in praying that this change in medication will only help her? The side effects and interactions of the various medications she’s tried thus far have been tricky to navigate. We’re always searching for the cocktail that offers her the best quality of life.

We’ve also run into some questions about her swallowing and coughing in the last month or so. She is scheduled for a swallow test in March to gauge how well she’s actually doing on this front. Her coughing has become less productive, which has led to some vomiting when she has extreme congestion. Please keep praying for her health during cold and flu season.

Overall, Emma is about the happiest little girl in the world. She loves big, jumps high, and keeps us entertained. She’s loving Minnie, Elsa, Bluey, and Daniel Tiger. She lives for not-school-days with James and Annie. She begs Daddy for “couch!” (aka tickles). And she is surrounded by an incredible community of family, awesome babysitters, church nursery workers, extraordinary therapists, and world-class friends who fill her precious days with love. We are soaking up all the goodness we’ve been given. And there is so much.

January’s update: a childcare miracle for us

If you’ve seen our last few updates, you’ll know we’ve been seeking out a long-term childcare plan to bring stability to our new neurodivergent lifestyle. After many months of piecing together the various team players the Lord has provided, we knew it was time to find one particular person who could join our team on a long-term basis.

Several crucial conversations led us to seriously consider the State Department’s cultural exchange program for au pairs — an arrangement that offers affordable, live-in childcare to US families who are willing to host an international nanny and give her an American experience. The program is highly regulated for both host families and au pairs, and we connected well with the agency that services our area.

In late November we began to interview potential au pairs, and in early December we “matched” with a lovely young woman in South Africa. We continued to get to know her as we prepared for her anticipated arrival on January 24, but our hopes were broken when, on Tuesday, January 7, her visa was denied. Such a big disappointment peeled back the layers on much deeper grief…it was a very low week in this Batten journey for me.

We began to browse the available au pairs again, paying special attention to anyone who was already in the country and wanted to extend their stay (because we wouldn’t run the risk of another visa denial in these instances). All day Tuesday and Wednesday I refreshed my search page…

And at 8p on Wednesday night, 36 hours after our first plan fell through, a brand new option appeared — Leila, 21, Christian, in New Mexico, available on January 24th.

I ran my phone to Stephen to show him her profile, I typed up the fastest outreach note I ever had, and I prayed she would be the Lord’s provision.

Minutes later, Leila responded to say she would love to chat — her TWIN SISTER had just matched in Columbus, Georgia (the second-smallest au pair region in the COUNTRY). We hopped on a call and I learned that Leila was hoping to extend in the area surrounding New Mexico, but she had decided to open her profile to families in Georgia so that she might find an option closer to her sister (who happens to be named Georgia and now lives in Stephen’s sister’s neighborhood 9 minutes away!!!!).

Several days and conversations later, we made plans to pick Leila up from the airport on Sunday, January 26th, and she’s been with us ever since! WE ARE SO GRATEFUL! Leila has jumped right into family life (as has Georgia several times), and it’s been the biggest blessing, not only to have the help we’ve been praying for, but to get to enjoy the fellowship of the Church from another part of the world. We’ve had some hilarious moments of recognizing just how American we are, and many conversations recounting the Lord’s kindness that led us all here. We’re grateful for the opportunity to host Leila for the next 6 months, expectant that the Lord has better in store for us than we dared to ask or imagine.

Thank you for praying us into this provision.

February’s update: losing our first Batten friend

In the midst of drafting this update, we’ve lost our first Batten friend, Millie. She left the land of the dying as February 11th began, and we’ll miss her until we’re Home with Jesus too. We had the privilege of grieving and worshiping with her family and friends on the morning of Valentines’ Day. It was a heartbreaking foreshadowing of a service we’ll host for Emma one day, and yet it was also the most hope-filled surrender of our own ambitions for Millie and Emma. One question lingers long and palpable — how do we walk in this “not our will, but Yours be done” tension for years on end?

I’ve just begun to read a timely work — Prayer in the Night, by Tish Harrison Warren — that beautifully captures the ache of believing that there really is a powerful God and He really is good and yet He really cannot be trusted to keep bad things from happening to us. Somehow, despite His sovereignty and His kindness, His job description does not entitle us to every escape from the pain of this world. In fact, Jesus promised the world would be full of trouble. Why does it feel like He’s breaking a promise when I experience the fulfillment of that one?

Warren points out that we don’t ultimately want an answer to our questions — we need His presence. Even if I could comprehend my world and my heartaches and their ultimate equity and redemption…what I need more than anything, what actually undoes the essence of my brokenness and pain, is to be with my Maker in the midst of it all.

Maybe this is why Jesus made another uncomfortable promise — “Blessed are those who mourn, for they will be comforted.”

Answers don’t unbreak a heart. But the Person at the center of the Story is still coming to be here in the middle of the mystery until He turns the page to the final chapter. The scars of Jesus bear witness to His willingness, bid welcome all my questions, bring solace to the ache of my now.

Wherever you’re grasping for hope in the mystery of your own sin or shame or suffering, it’s my prayer right now that He keeps the promise and comes close to you too.

Upcoming in March: Emma’s Make-A-Wish trip to Disney World! 💫

In early March we have the opportunity to take Emma to Disney World with the Make-A-Wish Foundation, and we are beyond grateful. She loves Mickey Mouse and Elsa. James and Annie are also absolutely thrilled, too.

Would you please be praying for this trip? We’ll be at the Give Kids The World Resort March 1 - 7, and we are asking the Lord to make it a healthy and beautiful week for all.

Resources we’re loving

• Prayer in the Night by Tish Harrison Warren

• All I Can Do is Say Thank You by Cecily

• Resurrection Hope by Aaron Williams

Prayer requests

• Please join us in praying for the Ramsey family as they grieve the loss of their precious daughter, Millie, to CLN1. Ashley was my first real Batten friend and has been a champion on our team from day one. How our small town held two Batten babies in the same season is a rare affliction…but I’m grateful we get to walk together. Please pray for Ashley and Austin, and their big kids, Ford and Evelyn.

• Please pray for a healthy and holy trip to Florida in March for our family. This trip is nestled into a 3-week vacation for Stephen, the first real slow-down in our lives since his career shift.

• Please pray for Emma’s transition onto new medication for epilepsy.

• And please keep praying for sleep and health during cold and flu season!

Once again, and always, thank you for your love and generosity toward us in this season. We’re still not alone. Praise God.

Love and gratitude,

Katie