Three years ago on March 21, our baby daughter Hannah passed away. Not a day goes by that she isn’t with me – always on my mind and forever in my heart. She was beautiful, with chubby cheeks, sky blue eyes and raven hair. Hannah had debilitating seizures and a degenerative disease that took her from us at 16 months old.
But the story I want to share isn’t about Hannah dying. This story is about the child she left behind.
While we were living through Hannah’s journey, my husband Greg and I were consumed with seizures and CPR, airlifts and ambulances. For our then 5-year-old son Wes, gone were the days of lingering at preschool and playdates in our backyard.
And yet without being conscious of it, we were also caring for Wes. The things in life that didn’t seem to really matter before, all of a sudden were the glue that held us together.
One thing, in particular, kept life sane for me and Wes: strolling. These walks, sometimes short, sometimes hours long…gave a framework for Wes and me to connect, unwind, be silly, and focus on each other. Wes would grab his crocs (these cute little yellow ones with the little monkey he picked out for himself that he wore everywhere), stand at the door and say “mama, can we go for our stroll now?”
Wes and I took hundreds of strolls during Hannah’s short life, but I have a favorite. It had been a really rough morning. Hannah woke up with a seizure that racked her small body, her heart racing, eyes rolled back and breathing erratic. As was the case when this happened, Greg and I jumped into our routine. He called 911 while I got the hospital bag pulled together. He went down the long staircase to wait for the fire truck, then ambulance to arrive. He walked the crew through her issues, I called Seattle Children’s and spoke with the on-call neurologist to let them know we were on our way again. I’d take over duty at Seattle Children’s once Hannah was out of the ER and in her room. Greg left with Hannah in the ambulance – sirens blaring through the quiet Saturday morning.
While on the porch listening for the last of the siren’s song, Wes and I heard a faint ‘thump thump thump’ of music. Wes got this little gleam in his eye…”what is it, mama?” he asked, shaking his little rump to the beat. “I don’t know!” I said, unaware of any reason for the music. “Let’s go see!” Wes shouted, already throwing on his crocs. “Right behind you!” I said, and grabbed my shoes and jacket.
Wes practically pulled me down the stairs and up the block to the main road. As we moved closer, the music got louder and louder. Wes was running, laughing with a huge smile on his face, not sure of what he would find. The fear and despair of Hannah’s seizure lost to the beat of the bass.
We approached the big ball fields near Greenlake. Hundreds of women and men in purple t-shirts were walking around the track, the DJ playing the best music to keep the crowd going. Wes joined in the parade. He laughed and danced like there were no worries in the world…I did too. What joy – so needed, and so loved. That memory became one of hundreds of strolls Wes and I have tucked into our hearts like precious treasures.
I think of Hannah’s pure love for Wes. How she would watch him – her eyes shining, her focus a bit deeper than with any other person in the world. During her life, Wes would ask questions about Hannah’s future, and assumed she, too, would get to grow up, become a mom, and her disabilities would disappear. His magical thinking sustained us through Hannah’s journey…his love for her and hers back to him didn’t break our hearts – it made them grow immeasurably. He got to know his sister, living together with her through the last months of her life.
And now, three years later, Hannah continues to teach us. We had another daughter a few years ago, Mimi. Wes shares stories of Hannah with her, talking about how much fun Hannah was, what a great sister. We are grateful for all that we have in our lives. We still sit in wonder of our amazing baby. And I count my blessings for my sweet Wes. My child left behind.