posts

A Gift Named Mallie

Oct 18, 2026 7:06 AM

WRITTEN BY: JOHNNA KAMINSKI

We don’ t know what tomorrow has in store for us, but I can confidently predict it will include some variation of Henry’s shenanigans. I just don’t know in what form the mischief will take place. This week he climbed onto the church’s youth center’s stage and took off his pants. Last week he tried to steal a picnic lunch from a family at the park. A crucial, but complicated, component of advocating for Henry is stepping into the public.

Unfiltered

Sep 17, 2026 7:41 AM

Steve and I grew up in the 80s! We experienced the height of fashion, music, and big hair! We’re part of the last generation that grew up without internet or social media. In 2026 online feeds are full of beautiful people going to beautiful places. There’s a noticeable absence of double chins and muffin tops. Many things online are filtered …our looks, our homes, our words. We carefully cut, crop, and edit our online presence to such extremes that we can, in effect, delete ourselves.

To be continued...

Sep 6, 2026 6:23 AM

Storytelling has been used to pass information and history across generations. There is power in a story-power to make meaningful connections, foster empathy, and spread awareness. We believe sharing stories about Henry on this blog will set hearts on fire for the special needs community. I knew I would have to write about his life in chunks because it’s not easy to revisit. But with hindsight, sharing his experiences has opened my eyes to the moments Jesus was holding our family. This week, a very wise friend reminded me that His promise is “I am with you.” She shared a quote with me, “A good parent doesn’t take the hard out of life, a good parent takes the “alone” out of it.” That thought encouraged me to think about our Heavenly Father in this light. Could He have taken away Henry’s challenges? Yes! Did he? No! Instead, He took the “alone” out of our circumstances. He was holding us in this promise all along.

Autism Diagnosis

Aug 30, 2026 7:14 AM

I've been blessed to meet and develop friendships with multiple special needs families and several online advocates. We’ve carried each other’s burdens, celebrated one another’s successes, and given tearful apologies when we’ve been envious about those successes. (It’s easy to find yourself longing for your child to make the same progress as your friends’ children.) Throughout these friendships, we’ve shared our stories about receiving a diagnosis. Some friends were relieved to have a diagnosis and no longer be gaslit (“this is normal, he’ll grow out of it, you need to work on behavior management”.) Some are frustrated by the amount of time it took to get a diagnosis. Without a diagnosis, an autistic individual cannot receive the support he desperately needs. Sometimes, a diagnosis is like a puzzle piece finally clicking into place, giving a fuller picture as to why a child might be experiencing the world differently. One commonality is that we’ve all found ourselves grieving the loss of the lives we envisioned for our children. I walked into Henry’s neuropsychological evaluation fully expecting to be handed an autism diagnosis. I thought this mindset provided me with a layer of emotional Kevlar. Nope.

Hero

Aug 23, 2026 10:46 AM

“Brave,” “Fighter,” “Warrior” are all words I could use to describe Henry. It’s easy to hear those titles and imagine a firefighter carrying a woman out of a burning building or a mother lifting her car in a burst of adrenaline to rescue her child. Henry has taught me another, perhaps more honest, way to picture my heroes. He’s shown me that those titles can also apply to a child who stubbornly refuses to quit.

No Compromise

Aug 16, 2026 6:54 AM

Everyone who has a non-speaking child knows the phrase, “love needs no words.” Families like ours live that phrase. Henry works hard to communicate his needs with us. We really try to listen closely, read his cues, and decode his body signals to meet those needs. Think about an average day. How often do your conversations focus solely on meeting needs? If I could have one genuine conversation with Henry, I’d treasure every nuance in his voice…his pitch, his tone, and the little southern twang he had before he lost his words. I’d ask every question under the sun and soak up the opportunity to get to know him in a deeper way.

Beat the Heat

Aug 9, 2026 7:01 AM

The best treatment begins with an accurate diagnosis! Armed with the SCN1B diagnosis, a brilliant doctor, and a new care plan, Henry’s seizures decreased from hundreds a day to less than 50 a day. Then, they decreased to around 30 a day. This was a miraculous improvement, and we did have thankful hearts. However, 30 seizures a day is not something we considered winning. One atonic seizure can cause significant injuries. Atonic seizures are also called drop attacks. They’ve been given this name because a person loses consciousness and drops to the ground (face first) as if they’ve fainted. These are the seizures that caused bumps, bruises, chipped teeth and bloody noses/lips/tongues. Typically, Henry would regain consciousness immediately after hitting the ground.

SCN1B (WHAT?!?)

Aug 2, 2026 7:44 AM

This would be a fascinating time to be in medicine! Advances are taking place at warp speed. The genetic testing that revealed Henry had an SCN1B variant didn’t exist when he had his first seizure. Fifteen months after his first seizure, this genetic testing was available and gave us a name for his fight. But, other than a string of letters, what is an SCN1B variant?

A New Chapter

Jul 26, 2026 12:58 PM

A new beginning. A new season. Turning the page. There are a lot of phrases we assign to significant passages of time. I never notice when a chunk of time is important enough to warrant its own title. But today I have hindsight and recognize this is the point in Henry's story where everything began to shift, marking the start of another new chapter in his journey.

The “During”

Jul 19, 2026 8:01 AM

Vlog by Anne Teague

45 Minutes

Jul 12, 2026 3:09 PM

If I had a giant miraculous eraser, there are moments of Henry’s life that I would wipe out of existence. This post is about 45 minutes that I’d love to obliterate with said eraser. I hate revisiting this part of his story. However, it’s my responsibility to speak on Henry’s behalf and my goal to spread awareness, so I need to share the struggles alongside the successes.

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