The Song That Helps Me Appreciate the Wonder in My Son's Spina Bifida


The drive up to see Henry’s specialists is a long one, and most of the time we need to wrassle everyone in the car and hit the road before the sun’s even come up. Clinic days start promptly at nine. We leave the house at six-thirty to avoid rush hour traffic, we drive 90 minutes (if we’re lucky) up to Park Ridge, and by the time we find parking and grab a muffin for June, it’s time to report to the radiology lab for Henry’s pre-admission ultrasound. By 9, I’m exhausted and we’re usually only still in the waiting room. Clinic days are a doozy.

Every clinic day is different, but we’ve developed something of a tradition. Every time we go to the spina bifida clinic, I swing by Starbucks, purchase a big-ass iced chai latte and pull out Natalie Merchant’s Tiger Lily CD that my husband purchased at Half Price Books last year (it’s always in our car because seriously? Have you heard it? That album is great). I turn on the second track and drive into the sunrise with this song on blast. I even throw in a fist-pump or two if it’s not too early.

I love her songs. I was eight when that album came out, so it reminds me of early fall afternoons as a third grader, watching episodes of Pop Up Video and eating fruit roll-ups while I struggled to do my math homework.

I blast that shit.

“Too noisy!” June hollers from the backseat, but mama don’t care. There’s one song in particular that I have to hear.

Doctors have come from distant cities
Just to see me
Stand over my bed
Disbelieving what they’re seeing 

Maybe it’s too on-the-nose. Mama don’t care. I had heard this song before in the third grade, and it was catchy, and I’m pretty sure the Pop Up Video version made my afternoon, but when I listened to it after Henry was born the entire world melted away and I grabbed my noise-cancelling headphones and blasted it because I was hearing it all for the first time. This is our anthem. And what more appropriate place to listen to it when we travel back to the place where we were first told our little boy would never walk?

O, I believe
Fate smiled and destiny
Laughed as she came to my cradle
Know this child will be able
Laughed as she came to my mother
Know this child will not suffer
Laughed as my body she lifted
Know this child will be gifted
With love, with patience and with faith
She’ll make her way

I adore this song and it resonates in my bones more than any Haas/Haugen song at Sunday Mass. It’s become our anthem. This child will be able. This child will not suffer. He will make his way. It might not be the same way everyone else travels, but dammit, he will make his way.

And it’s haunting — if I could go back in time and tell my old self anything, I would do exactly what Destiny is doing in this song. I would laugh. At the cluelessness of the doctors. In anticipation of our joy. I would whisper in my own ear: He will be able. He will be gifted. He will make his own way. You have no idea. 

I was accused a few months ago of lying. The specifics are unimportant, but basically I got into it with a bunch of strangers in an Internet combox who were asserting that a life with spina bifida is miserable, horrible, and that abortion would be a much preferable alternative. Needless to say, I disagreed. Others chimed in, saying that spina bifida was “incompatible with life” and that I was “minimizing” Henry’s “suffering.” Obviously, spina bifida was awful, and I had no earthly idea what I was talking about. Man. I’m the worst!

Is it difficult, this road we’re driving down together? Yeah. It is. And I want to write more about the difficulties we’ve faced — as a family unit, as a married couple — because sugar-coating our journey ain’t gonna help anybody. My marriage has scars, and I won’t pretend that it doesn’t.

But isn’t that what’s great about wonder? It’s a feeling of surprise, mixed with admiration. We are living this life. We’re walking down this difficult road together, our spina bifida journey. And I fully expected when we got the diagnosis — in all my ignorance — that it would be nothing but hardship and constant misery. And it’s just not. And I’m surprised. And I laugh. He is able. He’s not perfect. None of us are. But we’re able. And we’re making our own way.

And this boy? My smiley boy? So worth it.

I wouldn’t trade this fabulous life of ours, this sometimes-daunting road we’re walking down together. We’re making our own way — with love, patience, and faith. And I wouldn’t trade it for all the gold in Gringotts.


This post originally appeared on wifeytini.com.

JOIN THE CONVERSATION

Related to Spina Bifida

How 25,000 Shoes Helped a Little Girl in Bulgaria Find a Family

When Tracy Jensen and her husband made the decision to adopt a child with a disability, they knew the process would be complex. What they didn’t expect was the outpouring of kindness and generosity they would receive from strangers when things didn’t go exactly as planned. The Jensens have five sons ranging in age from [...]

This Young Man Just Got Into College, and His Reaction Is Seriously the Best

In the video below, Noah VanVooren opens an acceptance letter from Edgewood College in Madison, Wis. And he’s ready to celebrate. VanVooren, who has Down syndrome, is a senior at Little Chute High School in Little Chute, Wis. He made headlines this past October, when he suited up and scored a touchdown in his school’s final home [...]

What Makes This Film Special Is the Story Behind It

When actors arrived to go through the script on his new film “Where Hope Grows,”* director Chris Dowling became nervous. He had a big question for David DeSanctis, who plays a main character, but he felt uncomfortable asking. DeSanctis is 21 years old and has Down syndrome. Dowling had never worked with an actor with a [...]

Have You Worked Out With Zach Anner? Because You Need To.

Zach Anner is a YouTube sensation who posts weekly “Workout Wednesday” videos to his channel. Anner has cerebral palsy — and he’s made a name for himself by making fun of his physical limitations. Watch his latest installment below, where he celebrates making his 100th video and discusses the importance of milestones. Mixed in with [...]