We Took Many Walks During His Sister’s Short Life. This One Stood Out.

Three years ago on March 21, our baby daughter, Hannah, passed away. Not a day goes by that she isn’t with me. She’s 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. There are a lot of stories written by moms who’ve had children die. As we were grieving Hannah, those stories gave me hope that I would survive this heartache. This story is about our child left behind.

While we were living through Hannah’s journey, my husband, Greg, and I were consumed with seizures, 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 became the glue holding us together.

One thing in particular kept life sane for Wes and me: strolling. Wes has always been the kind of a kid who loves to be outside. Me too. When Wes was baby and he started crying, we’d go outside and sit in the grass and wait to see what might happen. An ant crawling up his leg, a breeze rustling the leaves in a nearby tree — all of it would calm him and me, the very frazzled mom, and we could continue with our day.

When we moved from our cozy home on Bainbridge Island, Washington, to a little rental in Seattle so that we could be closer to Seattle Children’s Hospital, nature again became our salvation through our strolls.

Our walks could be short or last for hours. It gave us time to connect, unwind, be silly and focus on each other. Wes would grab his cute yellow Crocs, 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 was racing, her eyes were rolled back and her breathing was erratic.

Greg and I jumped into our routine. He called 911 as I put the hospital bag pulled together. He went down the long staircase to wait for the fire truck and then the ambulance to arrive. He walked the crew through Hannah’s issues, while 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, while sirens blared through a quiet Saturday morning.

While we were 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 a 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, grabbing 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 ran and laughed with a huge smile on his face. The fear and despair of Hannah’s seizure lost to the beat of the bass.

We approached the big ball fields near Green Lake. Hundreds of women and men in purple t-shirts were walking around the track, while the DJ played music to keep the crowd going. Wes joined in the parade. He couldn’t believe his good fortune to be with this crowd. The DJ put on Salt-n-Pepa’s “Push It.” He laughed and danced like there were no worries in the world. Me too. What joy — so needed and so loved. Out of the hundreds of strolls Wes and I took, that one was tucked into our hearts like a precious treasure.

I think of Hannah’s pure love for Wes and how she would watch him with her eyes shining. Her focus on him was 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 grow up, become a mom and her disabilities would disappear. His thoughts sustained us throughout 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, Mimi, a few years ago. Wes tells Mini stories about how much fun Hannah was and that she was 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.

The Mighty wants to hear more about relationships and special needs parenting. Can you share a moment on your special needs journey that strengthened your relationship? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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