Light for Levi and Lessons

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Light for Levi and Lessons

Levi and Lainey have inspired an international movement of powerful prayer. These prayers provide our family with the resilience & clarity we need to persevere.

Light for Levi: sharing the lessons we’ve learned, the loss we’ve experienced, the love that’s grown, and the light we’ve found guiding us through an unexpected journey. We believe in miracles and we have faith in God's plan. From darkness, comes light. While prayer remains our predominant request, Levi's recovery effort is a tremendous financial undertaking. All funds we raise will be used to support the full recovery of Levi & Lainey.

08/19/2026

I wanted to clarify a little bit about yesterday’s post and Levi’s use of his eye-gaze device, because understanding how he is learning to use it will help answers a lot of the questions I saw.

Yesterday wasn’t about suggesting that Levi independently navigated endless choices and created his answers in real time. It was about finding a way to meet him where he is right now and include him in something our family does together.

For our Rose, Bud, Thorn tradition, Savanah had asked Levi a series of yes/no questions earlier in the day to help determine what he wanted to share. She then programmed his three answers into his Tobii device.

When it was Levi’s turn at dinner, he used his eyes to find his Rose, Bud, and Thorn. He held his gaze on his choice for two seconds, the device recognized his selection and spoke the response out loud.

His eyes make the selection, and the device gives that selection a voice.

We were celebrating making a tradition inclusive at the level that Levi needs it to be right now.

Learning eye-gaze communication takes time. Levi is learning where things are on the screen, how to navigate between pages, how long to look at something to select it, and how to do all of that while also processing the question being asked.

Right now, one of our biggest goals is helping him answer yes/no questions accurately while learning to navigate his device. His school has shared that he is doing an excellent job with this, which is incredibly encouraging. We’ll hopefully capture some videos to share soon!

As these skills develop, we can continue expanding his communication pages and vocabulary. Eventually, instead of having his Rose, Bud, and Thorn prepared ahead of time, we hope Levi can navigate through choices and tell us about his day in real time.

Yesterday wasn’t the end goal, it was just a crack in the door to the world of endless communication possibilities.

These are baby steps, but they matter. Every time we incorporate Levi’s device into an ordinary family routine, the door will keep opening wider,. As we give him the opportunities to practice, learn, participate, and discover that his voice belongs in these moments too.

08/18/2026

Rose. Thorn. Bud.

On the nights when we’re all able to sit around the dinner table together, we have a little family tradition called Rose, Thorn, Bud (a game we adopted after hearing our friends do this with their kids).

We go around the table and share:
Rose — the best part of your day
Thorn — the hardest or worst part
Bud — something you’re looking forward to

It has become one of my favorite ways to slow down, hear what’s happening in each of our kids’ worlds, and really talk about our days.

And then there’s Levi.

When it gets to his turn, I’ve always spoken for him. I would tell the family what I thought his Rose, Thorn and Bud were from the day.

But yesterday, I asked Savanah to add Rose, Thorn and Bud to Levi’s Tobii eye-gaze device.

And last night, when it was his turn…

Levi told us about his day. All by himself. 🥹

He used his eyes to scroll through the images on his device and for the first time, he was able to participate in our family tradition all by himself.

This is a family dinner that I will never forget.

And I have to say… since doing the DeZawa Muse Cells, we have truly seen an improvement in Levi’s ability to communicate on his eye-gaze device. His teacher and therapists at school have noticed a significant difference, too, compared with just a few months ago.

We don’t take a single bit of progress for granted and we can’t wait to watch him continue to grow.

08/04/2026

Happy first day of school to my crew!

I now have a first, second, fourth and sixth grader! I

’m so proud of all my kiddos and praying for them to all have the best year filled with happiness, growth, learning, and friendships.

Also praying that Levi can adjust to his classroom setting and that his communication on his eye gaze device will skyrocket this year! He had incredible sessions over the summer and I can’t wait to see how his continues to show us everything he is capable of!

07/24/2026

Finding peace again in everyday life.

It has now been about six weeks since Levi received his DeZawa Muse cell treatment, and I wanted to share an honest update.

The changes we are seeing aren’t dramatic, overnight miracles. They’re the kind of changes many people might overlook. But when you’ve spent years caring for a child with a severe brain injury, you learn that some of the most meaningful victories aren’t always the easiest to see.

The biggest change we’ve noticed is improved regulation.

Levi is calmer. More comfortable. More at ease in his own body.

We’re also seeing improvements in his visual attention and tracking—something I have prayed for over and over again. As his vision improves and he becomes more comfortable in his body, it feels like those pieces are working together to help him stay regulated throughout the day.

And honestly, this has been life-changing for our entire family.

We first noticed it during our trip to Disney.

Levi spent the day happily taking it all in from his stroller. One day we were there for almost 14 hours, and there wasn’t a single tear. He was comfortable. He was content. He was happy.

For me, that felt like a dream come true.

A couple of weeks later, an opportunity opened for Levi to attend an MNRI intensive in Cincinnati. For the first time since his accident, I felt confident enough to make the drive by myself.

And he was calm.

The entire drive.

I honestly couldn’t believe it.

Then, after Charley’s appointments, Levi happily stayed with us while we shopped at the outlet mall for three hours and finished the day with dinner.

The whole day.

No tears.

No constant need to be held.

I kept looking at him and saying, “Levi, you are being a dream.”

Because for most families, a day of appointments, errands, shopping, and dinner is ordinary.

For us, it felt extraordinary.

The gift of a more regulated nervous system has given our family something I wasn’t sure we’d ever have again—more peace, more freedom, and more opportunities to simply enjoy being together.

And that is a victory worth celebrating.

07/16/2026

July has been a whirlwind… and now you know why I’ve been so quiet. 💛

If you’ve been wondering where I’ve been, I promise I haven’t disappeared. Life has just been moving at lightning speed, and I haven’t had a chance to sit down and share everything that’s been happening.

The past four weeks have been a blur.

We went straight from Levi’s DeZawa MUSE Cells treatment week to Evansville for Connor’s baseball tournament… which unexpectedly included evacuating our hotel in the middle of the night because of a fire. 🤪 So much for trying to keep our nervous systems calm and stress-free!

We came home for just five days filled with camps, appointments, laundry, and repacking before heading to California for Charley’s surgery. We intentionally added a few extra days before surgery because we’ve always tried to make our medical trips feel like more than just hospitals and procedures. We want our kids to build joyful family memories alongside the hard ones. ❤️

That meant making memories together with our families first trip to California at Disneyland and the beach before surgery, and I’m so thankful we were able to do just that.

Then it was back home for another quick and busy week with camps and Connor’s final baseball tournament of the season before jumping right into Levi’s 7-day MNRI intensive.

To be honest… my head has been spinning. I’ve been craving a moment to slow down, catch my breath, and process everything.

But even in the middle of all the chaos, we are seeing good things. Really good things.

We’re seeing encouraging changes in both Levi and Charley, and I am excited for what’s ahead.

Over the next week or two, I’ll be sharing more detailed updates about everything—from Levi’s DeZawa MUSE Cells treatment and MNRI intensive, to Charley’s surgery, some exciting progress we’ve been seeing, and a few lessons we’ve learned along the way.

Thank you for sticking with us, praying for our family, cheering on our kids, and continuing to follow this journey.

July has been exhausting… but it’s also been full of hope. 💛

06/25/2026

Here is a recap from our first trip receiving Dezawa MuseCell Innovations® with and Erinn Askin MA OTR/L,PAMs.

Omar Novelo
Rezzimax Pain Tuner

06/22/2026

Happy Father’s Day to the one who makes our girls squeal with excitement the moment they see him. To the dad they run to because they know they are safe in his arms. To the father our son wants coaching his teams because he respects him, looks up to him, and values his knowledge and guidance.

To the dad who stays up throughout the night caring for the medical needs of our children, then somehow finds the strength to get up and face another day of work without complaint. To the one who can hold Levi, calm him, and wrap him in a hug that makes him feel completely safe and loved.

So much of what Scott does happens behind the scenes and often goes unnoticed, but our family would not be the same without him.

He is the glue that holds us together, the pillar that holds us up, and the steady presence our children count on every single day. I am so grateful for the way he loves our kids, fights for them, and shows them what unwavering love looks like.

Happy Father’s Day, Scott. We love you more than words can say.

06/19/2026

Today we received an unexpected blessing for Charley.

This morning I had coffee with two of the mama’s who are here with their kiddos (Extraordinary Ella and Beelieve in Benny) for the treatment and talked about how I had really hoped to do the DeZawa Muse Cell protocol with Charley during this trip as well. I truly believe these cells have the potential to improve her quality of life.

Charley lives with suffering every single day.

Most people would never know it because she hides it so well. She pushes through the pain, wipes away her tears, and keeps going.

But the reality is that her body hurts.

She lives with chronic illness, chronic lung inflammation, and a persistent cough. When she gets sick, it wipes her out for weeks, not days like a typical child. Every night, she cries from the pain she feels in her stomach from her G-tube. Yet somehow, she has learned to live a life where pain is simply part of her normal. It’s all she’s ever known.

As her mom, my heart just breaks for her. No one wants to see their child suffer, especially when the pain isn’t something that can be fixed with a dose of Tylenol. It’s simply her reality.

We had originally decided not to move forward with Muse Cells for Charley on this trip because she has recently been sick and was on two different antibiotics this month. It is generally recommended to avoid treatment immediately following antibiotics, as they may affect the cells’ impact. So, we felt it was best to wait and maybe do it in the future.

But being here this week, watching everything unfold, I couldn’t stop wishing there was a way for her to receive them too. If there was even a chance they could ease some of her suffering, I would do it for her.

Then today, I received a bittersweet call.

Unfortunately, Benny was unable to receive his full dose of cells this afternoon. As a result, there were 10 million freshly prepared cells that could not be used.

Shelby graciously called and asked if Charley would like to receive those cells.

I couldn’t believe it. I immediately said yes.

While I hate that Benny wasn’t able to receive his full dose today, I am praying that the cells he has received this week will help accelerate his healing and that his body received exactly what it needed.

Charley absolutely hates anything medical-related. She carries so much trauma from years of appointments, procedures, and therapies. But when I explained that these cells could help her body feel better and improve her quality of life, she bravely agreed.

With no tears, she received 10 million DeZawa Muse Cells intranasally today. She held Levi’s hand, and together we prayed for healing for both of my precious babies.

We don’t know exactly how this will affect Charley, but we are hopeful that this unexpected gift may have a meaningful impact on her quality of life. I also love that she can tell me how she’s feeling, which may give us insight into what Levi could be experiencing as well.

So far, she seems to have had a surge of energy (hence the dance video I posted earlier 🤪). She has reported no negative side effects and says she simply “feels good.” 😌

Thank you, Shelby, Benny, and the entire Cannon family. We Beelieve in Benny, and we are praying for healing for all of our sweet children.
Shelby Cannon BEElieve in Benny 🐝

Address

PO Box Address: , 4000 W. 106th Street Suite #125 PMB 444
Carmel, IN
46032

Website

https://linktr.ee/meagan.chisholm

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