Bentley Update
I’ve been wanting to give an update on Bentley and our family for the past month, but I held off for a few days after reading about Theo. His family deserved the space, love, and support from this group, and I didn’t want to take away from that in any way.
As another dad in the medically complex world, Theo’s story hit me hard. I have thought about him and his family a lot. It is impossible to read something like that and not hold your own child a little tighter. These kids fight harder than most people will ever understand, and the families behind them carry a weight that is hard to explain unless you live it.
As for Bentley, he is doing okay overall, but this past month has been a lot. After contracting adenovirus, he has still been dealing with some residual issues. He has needed increased oxygen, antibiotics for a trach infection, and increased breathing treatments to help keep him moving in the right direction. Even with all of that, he is still Bentley — wild, strong, stubborn, and full of personality. He keeps reminding us that even when things are scary, he is still fighting.
At the same time, our family got some really hard news. My mother-in-law was diagnosed with squamous cell carcinoma, and we found out it has metastasized into her lymph nodes. She is currently in the hospital and will need skilled nursing care. We are trying to get her moved closer to us so we can be more involved and make sure she is not going through this alone. We had to move her belongings into storage near us, and during that move, a table fell and injured my wife’s ankle and leg. She is now having to wear an assistive boot for stability while still trying to be a mom, wife, daughter, and caregiver through everything.
It feels like this past month has been one thing after another — Bentley’s oxygen and respiratory issues, my mother-in-law’s cancer diagnosis, hospital decisions, moving logistics, my wife getting hurt, and trying to keep our family steady through it all.
On top of that, I launched my own mobile detailing business after leaving the fire department to help supplement the income we lost and build something more stable for our family. It has been going well, and I’m thankful for every customer who has trusted us so far. I’m still learning how to market, gain clientele, and grow it the right way, but we are making progress one job at a time.
I won’t lie, this season has been exhausting. Some days it feels like we are just surviving the next appointment, the next phone call, the next setback, or the next thing that needs to be figured out. But we are still here. Bentley is still fighting. My wife is still pushing through. And we are still doing everything we can to take care of the people we love.
This group has been a place where I can talk about things that most people in everyday life don’t fully understand. Life with a medically complex child is beautiful, terrifying, exhausting, and humbling all at the same time.
Please continue to keep Theo’s family in your thoughts. And if you have a medically complex child at home, hug them a little tighter today.
Thank you to everyone who has continued to follow Bentley’s story, check in on us, pray for us, encourage us, or simply read these updates. It means more than you know.