04/30/2026
We are so very PROUD of our besties!!! I cannot wait to see what comes of this trip!
And I may also be crying laughing already at the thought of the look on the Congress member's faces when he tells stories about him and Liam....
Levi also may have a habit of bluntly telling people Liam is dead 🙈🤦🏼♀️. But you know what, whatever it takes for him to process his grief! That's ok! 💚💚
April 30, 2026
It's been a minute but we are still here and still marveling at how viral Levi's story has gone. I knew that God would do something big with Levi's story and even though I've trudged through this season of life kicking and screaming the entire way, it's been nice to see a slight silver lining so soon. I think God knew I needed to be thrown a bone because if you've followed us for awhile, you know it's been dark. And while our personal lives are still like a bad joke most days (I'm looking at you, Spirit Airlines and our hot water heater that died today....and our flashing and shingles that recently blew off...I'll just stop there 🫠), it's been really nice to see some positives. Life has definitely been lifing over here.
I never expected when Levi rang his bell that our small town story would go nationwide being picked up by NBC Nightly News with Tom Llamas, People, Inside Edition and beyond. His story has literally been views hundreds of thousands of times across the country. I figured that we'd had our 5 minutes of fame and that was it but we received a pretty exciting call last week that puts us on a pretty big stage for sharing Levi's story 😳. Branden, Levi and I have been invited to accompany the government affairs team from Akron Children's to Capitol Hill in Washington DC to advocate for the importance of quality children's hospitals and Medicaid for children in the United States. We will be meeting politicians and attending a national conference with the Children's Hospital Association in June with other families and hospitals not just from Ohio but across the nation. We are so excited and honored to be able to represent Akron Children's at this event and to advocate for all children. I never expected that Levi's diagnosis would put us on a NATIONAL stage but man, if there's ever a kid who's story deserves to be shared, Levi feels like a pretty awesome candidate. He absolutely makes me want to pull my hair out some days (oh 12 yo boys 🙃) but my goodness, he's a really cool kid that is doing some really amazing things. I have no doubt he will charm the pants off of everyone he meets in D.C.....aaaaaaaand will absolutely mention his love for Michael Jackson, offer to moonwalk and nonchalantly tell people his best friend is dead 🤦♀️. Maybe I should make some bingo cards with Levi-isms for the trip 🙈🤣
So stay tuned. What started off as his Buddy Walk for Down Syndrome team then became his cancer-fighting village name, Levi's Legion is morphing yet again. God is good (and yes, I'm still salty about how we got here but I'm working on it. Just keeping it real over here 😉).
Oh, and please pray that the man of the hour/day/month/year stays healthy the next 10ish days. His rescheduled port removal date is now May 11 and we REALLY need this date to stick. He's had a perpetual sinus infection for nearly six months and a CT scan confirmed it's never actually fully resolving so they are going to do a sinus wash while he's under as well so we can hopefully get him on the upswing. If he gets sick again (stupid allergy season), the date will get push to June which really starts getting close to our summer vacations and he is going to be big time angry if he can't swim in the ocean or Torch Lake for the third summer 😬. He has been so looking forward to these trips and being a regular kid again and I REALLY don't want to break his heart again. We'll keep ya posted!
Thanks for being the best village ❤️
