A love note to the army God is continues to form before our eyes:
For those who know Remmie, you’ve witnessed how the Lord shines so brightly through her little soul. Though she doesn’t have words, we know she speaks to the hearts of everyone she meets. You can feel it. There is such depth to her and mystery beyond our understanding.
At the beginning of Remmie’s life and the unraveling of her story, we were overwhelmed by the heaviness that comes with a diagnosis like hers. Developmental delay, nonverbal, handicap, disabled, and incurable epilepsy are words that cut straight to the heart and leave a trail of grief with their every stride. But God met us in our pain, our loneliness, our sadness, our confusion, our wondering if God could equip us to provide a good life to a child who needs so much. What we’ve learned throughout Remmie’s life is that it’s not just good, her life is a gift. A gift that we are meant to share with the world in order for all those who are willing to see and listen to how the power of Christ works in her life. He gets the glory for this child and we are humbled He chose us to be her parents.
Our prayer has always been for Remmie to be healed and whole this side of heaven, but if she’s not, we know her story is one that has the power to show people who Jesus is and what He is able to do. In just seven short years of life, Remmie’s story has redirected, re-engaged, reunited, re-established, and re-ignited those who are listening and tracking with her journey to lay knees to the earth in awe of our Creator.
For those who may not know the intricacies of Remmie’s diagnosis, let us explain. Remmie has an extremely rare genetic disorder that greatly affects the way her body develops. Her diagnosis is accompanied by severe seizures that continue to stand in the way of her reaching important milestones in her development. Though Remmie has overcome so many things we didn’t imagine would be possible, there are still so many more we want to see her do. We want to hear her voice call out our names. We want her to be able to do practical life skills and gain more independence. We want her to read one day. We want her to ride a bike and build forts in the woods with her sisters. For the majority of Remmie’s life we have chased doctors across the map searching for ways to help her, but all we seem to uncover is hopelessness and more medication to try. Temporary relief with unknown expiration dates didn’t feel right anymore.
There needed to be a shift, so we prayed the doors would start flying open.
“Tell the story” is something the Lord impressed upon Lyndsey’s heart a few years ago, so she began to share parts of Remmie’s story on her social media—the good, the bad, and the in between. God also told Lynds to “build the army”, so it’s through sharing these glimpses of our lives with Remmie that her little community has transformed into this mighty army who faithfully prays so fiercely for her and our family. If there is a need, Lyndsey boldly calls out to Remmie’s army. The response is always tenfold.
Pray Remmie begins to walk. And she did.
Pray Remmie gets access to a wheelchair. And she did.
Pray Remmie can fly across the country in a private jet for further testing. And she did.
There are so many more stories to tell of His goodness and provision through this army, but the most recent is one that will forever change us. We are wrecked beyond measure. The response to our desperation of brainstorming a way to afford a quality life for Remmie with therapy and respite care as immediate needs, turned into full provision in only a matter of months. Much like a warrior leaping onto a battlefield, that’s what we have witnessed before us. Friends, family, total strangers giving in such a radical way and lifting us up when we were most tired and weary. Our hope has been restored through what God is doing through you. Forming words to tell you how thankful we are isn’t possible.
There are so many unknowns with Remmie and navigating our life with her, but one thing we continue to feel certain of is keeping doctors who see hope in Remmie and watching them map out a plan for her care. Dr. Crawford at Neurosolutions in Austin, TX is the first doctor we found who showed us Remmie’s potential and restored hope to us after years of dead ends. In 2024, we were able to raise enough funds to afford all of Remmie’s home care tools, expensive supplements, and multiple 2-week intensives and VSEL procedures at Neurosolutions. We were even able to add on exosomes to her most recent VSEL, which are stem cells that serve to expedite repair and healing in the body and brain. Lyndsey has also been able to receive more direction from the team in Austin to equip us with the necessary tools and knowledge to continue therapy at home and maintain momentum with her development.
After our most recent 2-week intensive at Neurosolutions, we felt a tug on our hearts to pause and pray for next steps after not feeling the surge of development or breakthrough we felt the first time. The cost of care, efforts to fundraise, and overall stamina we must maintain with home therapies through Neurosolutions began to outweigh the drive to pursue care as whole heartedly as we first did one year ago. Burnout set in, and the hopelessness started to come back after months of Remmie being stuck in development once again.
To be totally transparent, there have moments of utter peace as we walk this road, but there have also been big moments of pausing and pleading for more direction from the Lord when we feel tired, inadequate, and unable to afford the next part of Remmie’s care. While we do not yet have the funds to commit to the ideal care plan for Remmie at Neurosolutions as discussed with us in November, nor do we have the drive like we once did due to the lack of measurable progress and recent uptick in seizure activity, we have decided to take a pause and plead for next steps from the Lord. We have seen mountains moved for us to be at Neurosolutions and we are asking Him to keep carrying us if this is where He wants us to be.
In the midst of waiting on the Lord, we got connected with a local practice that works with rare cases, a follower of mine from Instagram, of all places, and a warrior in Remmie’s army, Dr. Kevin Amen and his wife, Kim. The Lord began to open doors to let Dr. Amen be a part of Remmie’s care team, and she is now currently being treated weekly by him under close surveillance to tweak care to the best of his ability with the overall goal of unlocking parts of Remmie’s brain to allow her to develop and regulate better.
Our reality is this: we have turned over every stone we can possible think of, and much like Dr. Crawford, Dr. Amen has swooped in and offered us hope for Remmie. He believes in her so much, and we trust his abilities with our daughter. The kind of care needed to raise a child like Remmie comes with such a heavy price tag because, for us, insurance doesn’t cover anything we do to help Remmie. To be able to continue the best possible scenario of care for Remmie, to include respite care for her at home, $75k is the current estimated amount we have to come up with annually. Our creativity runs wild with how to accomplish such a lofty goal, but we come back to this every time—it’s not even possible without the army He has provided for us. We are believing He will continue to provide, just like He always has—financially, practically, emotionally, and spiritually. That He would sustain us—whatever that looks like. We continue to seek his wisdom, pray fervently for discernment, and invite you to be a part of the story the Lord is writing through Remmie’s life. We will continue to hope. And be patient. Always.
Our whole hearts,
Grant and Lyndsey
