DIPG- Deeply Impacted, Purposeful Grief

05/27/2026

Tomorrow afternoon we are headed to Ann & Robert H. Lurie Children's Hospital of Chicago. This Saturday they are holding a ceremony and dedication for our sweet Jett. He will be honored with his name on their wall of love for his fight, the people, families, doctors, staff, and other children he impacted. It's such mixed feelings going back. Last time we were there, Jett was intubated and placed on a feeding tube. We lived in the hospital room for 21 days praying for a way home- until a med plane did bring us back to pittsburgh. It's strange to go back without Jett. I wish he didn't have to be honored for this because he was still here. On the other hand, as his mom, I'm proud of how bold and fiercely he lived and all those he encouraged/loved along the way. The goal is to live and love half as well as he did. Forever our hero. Forever missed. Forever loved.
Pray for us- emotions, triggers, and safety travels.
How to do Chicago with out Jett? Prior to his 21 day hospitalization, he LOVED Chicago- all the food, all the things.

05/26/2026

It’s been awhile since I posted. Truth is I have been processing so much grief. I miss my boy more as time goes. Somehow that’s possible. That’s the thing though- none of us should have to miss our babies. The natural cycle of life was broken the minute you get the diagnosis and are told your child’s odds. My heart hurts not just for myself, but for every other parent, aunt, child, uncle, grandparent, brother, sister, etc. that get this news. That has to fight this fight and live this story. I’m praying for all you warriors, and for the bereaved families too. I’m also still praying for a cure 💙🫂

03/15/2026