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.

RELATED VIDEOS


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 6 to 18. Their youngest son, Kumaka, was born with Spina Bifida — a birth defect that has both physical and neurological symptoms. Soon after, Tracy Jensen began a blog called, “Dear Life from a Mom of Boys” about her growing family. She became active in the Spina Bifida community.

One of the mothers Jensen met online was in the process of adopting a child from Russia. The woman’s story was uplifting, and Jensen and her husband soon found themselves discussing a similar adoption.

“I didn’t think we would qualify,” Jensen told The Mighty, “but we did.”

In August 2012, they contacted Children’s House International Adoptions, a non-profit adoption agency headquartered in Washington State with programs in 14 countries.

“We told [our case manager] we were interested in adopting a young girl with Spina Bifida, and she sent us several profiles of available children,” Jensen said.

Among them was 3-year-old Sofi — a tiny girl with big, beautiful eyes and an infectious smile.

“We just fell in love with her,” Jensen said. via Tracy Jensen

There was just one problem – the Jensens needed help raising the $35,000 in adoption expenses.

So, the family organized several fundraisers — the most successful of which was a drive dubbed, “Shoes for Sofi.” Its premise was to collect pairs of “gently worn” shoes for Angel Bins, a for-profit company that helps raise money for nonprofit causes by recycling used items.

Their goal was to collect 5,000 pairs of shoes. Many shoes came from neighbors in Fountain Valley, Calif., — but an outpour of support came people from around the country. Every day when Jensen stepped outside her home, she’d find bags of shoes piled up by her doorstep.

“Never in a million years did we think we would see our shoe drive go almost viral,” Jensen wrote on her blog.

The family eventually reached their goal of 5,000 pairs — then, they surpassed it. In total, they collected roughly 12,500 pairs of shoes in just five weeks, earning more than $9,000, according to Jensen. This allowed her to travel to Bulgaria in February 2014 to finalize the adoption.

When they returned, mom and daughter were greeted at the airport by the rest of the family.

10153052_615595008520532_406144967_n

“Everybody loved her,” Jensen recalled. “She fit in perfectly.”

That didn’t change when doctors in the U.S. told the Jensens that Sofi’s original diagnosis was not accurate. Sofi doesn’t have Spina Bifida — she has cerebral palsy, as well as other medical issues, some of which remain a puzzle, Jensen said.

But her family isn’t concerned with the change in diagnosis. They’re thrilled to have Sofi with them and are prepared to do whatever they need to help her.

“[Cerebral palsy] is a different world from the world of Spina Bifida, but that is okay. We will figure it out,” Jensen said. “She was meant to be with us.”

“This story is about love,” she added. “It’s about the love for a little girl and all the people who helped bring a little girl they didn’t even know home.”


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 game of the season. This fall, he’ll attend Edgewood’s Cutting Edge program, FOX 11 reported.

Congrats, Noah! Your joy is contagious.


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 chromosome disorder. Finally, he just said it: “David, can you read?”

“Dowling,” DeSanctis replied, laughing. He licked his thumb and flipped over the script’s first page. “Of course I can read.”

“Where Hope Grows,” which premiered at the Dallas International Film Festival in April 2014, follows the friendship between a former professional baseball player (Kristoffer Polaha) and a grocery store clerk (DeSanctis). But there’s an important story behind the story — how DeSanctis changed the perspectives of the cast, crew and executives he worked with.

“Going into that first day I was ignorant about the capabilities of people with Down syndrome,” Dowling told The Mighty. “You’re inclined to go, ‘Oh, that’s David. He has Down syndrome. No. Down syndrome doesn’t define David. He’s a dynamic, cool dude. He just happens to have an extra chromosome on him.”

produce-david-kris

When Dowling and producers first met DeSanctis at a casting call in Louisville, Kentucky, the 21-year-old didn’t give the best audition. Before “Where Hope Grows,” he’d only acted in a high school play. His personality won him the role.

“David has an infectious, contagious personality,” producer Milan Chakraborty told The Mighty. “His joy and spirit separated him from the other auditions. There was just something about him that assured us he was the right man.”

Throughout filming, DeSanctis continued to prove himself.

“He’s a good actor,” Dowling told The Mighty. “Not a good actor with Down syndrome. A good actor.”

10498129_373097102815150_1063980547553295848_o

On one of the last days of shooting, in a scene that includes 500 extras, DeSanctis did a few takes and then walked off the field. Chakraborty and Dowling went over to see if he was alright. DeSanctis was collecting himself.

“I just can’t believe you guys picked me,” he said. “You’ve changed my life.”

After seeing the film, DeSanctis, who recently began working in a grocery store just like the character he plays, knows the impact “Where Hope Grows” could have on its viewers.

“I want people to walk out of the theater knowing that it’s not about looking at our disabilities,” he told The Mighty. “It’s about looking at our abilities.”

He has big plans to continue showing off those abilities.

“I’m not done acting. I’m not close to being done,” he told The Mighty. “I have to act with Jennifer Lawrence before I even think about quitting.”

Watch the trailer for “Where Hope Grows” below. The film is scheduled to hit theaters May 15, 2015.

*The title of “Where Hope Grows” was originally “Produce.”

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.


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 his hilarity are a few great tips for setting goals and cherishing the little things.


“If I cancan, you cancan,” standup comedian Maysoon Zayid triumphantly says in the December 2013 TED Talk below.

Her 14-minute talk is a combination of hilarity, honesty and inspiration — even though Zayid claims she’s not inspirational. Take a look:

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.