The Wrist Band

"Check it, people, I'm cool."
In the years since Savannah's birth, the children's hospital has adorned my arm with wrist bands on numerous occasions. It was fun to wear one for a music show instead. Every time I left the venue and returned, I flashed the blue bracelet.

"Yeah, that's a concert bracelet. I'm cool."

It felt liberating and unreal, as if I'd reemerged from a cocoon into the world of the living.

We'd arranged for Savannah's nurse to come in very early.  We hopped the downtown train, and before first light, entered the Four Season's Hotel for their annual, early morning SXSW benefit concert for the Shivers Cancer Center, simulcast on the World Cafe.

At first, I felt a strange unease to be in a music venue. I shouldn't be here. I'm not allowed to have fun anymore. I am shackled to a child with multiple disabilities who would be so upset by the confusing stimulation of a place like this that she would spiral into painful seizures.  She'd cry and flail and punish us for trying to step outside her routine. We'd have to go home early, frustrated, dejected, and depressed at the the prospect of yet another failed attempt to get out.

Breathe... she's not here... she's having fun at home with her favorite nurse... enjoy this... just enjoy this, I told myself.  The tension in my face dissipated.

The audience was filled with families.  The row in front of us sported five kids around six years old. Their parents passed sloshing plastic cups of screwdrivers and mimosas over each other and wrangled the children, who kept changing seats.
Mixing boards have changed a bit

After the first band, Ruby grew restless, so we went spelunking.

"Let's race!" She exclaimed, "Don't knock down any old people."

"I'll try not to," I said.

She darted down the hall, weaving through the crowd.

I caught up to her at the grand staircase.  "This is a fancy hotel," she said, "Can we stay here?"

"It's out of our price range."

"Let's race up the stairs!"

We sprinted up and back. We galumphed onto the grassy bluff that overlooks the river.  I stood on the path, absorbing the tepid morning sun while Ruby wrestled with a hammock in giggles. We ran to the floating pier and she held my hand with the Congress Avenue bridge glowing in yellow sunshine.  So, this is what parenting a normal child is like, I thought in awe.  It is so easy... so pleasurable, even.

The "Kins" at SXSW
Back inside, the music worked its magic, helping me to forget my troubles, live in the moment, be open to possibility. It wasn't long before I was tapping my toes.

Ruby was thirsty so she went to the back of the room and poured herself a cup of water.  How amazing, I thought, that she can tend to her basic needs all by herself. This life of "normal people" still feels so alien.  When I see a child talking or sitting up unassisted, not seizing at sudden movements, I wonder if those parents know how lucky they are? 

We couldn't have made this outing with Savannah. She would have hated the cold day, the noise, the flashing lights. Where would I have changed her diaper? (You can't exactly hoist a fourteen year old girl onto one of those flimsy changing stations in the "family restroom.")

I am happy for this time spent with Ruby and Tamara because I know there are many people who can't get out. They are too poor, too ill, too crushed under the weight of their obligations. I must always remember not to take these moments for granted... for they are precious. Today the wrist band is blue. Tomorrow, it could be white, stamped with Savannah's name and date of birth, affixed to my arm by the somber woman at hospital admissions.

#AustinTexas #SXSW #WorldCafe #Austin #TexasMusic #parenting #SpecialNeeds #disability


  1. The Seed left some breadcrumbs so I've popped round. Very happy for you in getting out a bit. This life is positively hermetic. Looks like we both share an interest in giving our kids the absolute best we can. Keep up the good work.

    1. Thanks for checking out the blog. Before Savannah came along we went to shows, traveled the world (Savannah was born in Morocco). That life came to a terrible, screeching halt with her birth. I lived as a hermit with her for years. Now that she's nearly 15, we've managed to find ways to make small forays into the world. By the way, I visited your blog and like it very much. Very good work, back at you. Wishing you and your family the very best.


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