This Mother Is Using Her Camera to Redefine Spina Bifida

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Black and white photo of baby sitting on the beach with arm raised
Redefining Spina Bifida

Although spina bifida is one of the most common, permanently disabling birth defects, most people know very little about it. Many families affected by spina bifida are working on finding ways to help redefine it.

Just over three years ago, my life was changed when I received the diagnosis that our baby boy would be born with spina bifida. Some time in the first 28 days after conception his spine didn’t fully form. He was born with an opening in his spine that required surgery when he was only 4 hours old. He’s since endured a total of 12 surgeries and has spent more than a month of his life in the hospital. I have to admit, three years ago, our family was frightened to learn all of the complications that could happen with a child born with spina bifida. So much so that we nearly gave up on his life, but instead, we decided to give him a “chance.”

Black and white photo of mom holding baby

Over the past three years, my son Chance has inspired me in ways I never imagined possible, something all parents of a child with spina bifida might say about their child. As a photographer, I found myself documenting his life and learning that he was born perfectly made, despite the imperfections we once feared.

Black and white photo of baby from behind

Over the past three years, my son’s story has inspired many, and I’ve come to meet so many other families affected by spina bifida. In 2011, I began to photograph other children born with spina bifida in hopes of creating awareness and supporting our local spina bifida community. I hope that by sharing some information about spina bifida, along with some of the images captured over the past three years, that I might be able to further redefine spina bifida. Hopefully, this may help you learn a bit more about this birth defect that affects more than 166,000 Americans.

Black and white photo of child in overalls

Black and white photo of child walking with walker

Most individuals born with spina bifida face mobility challenges. Usually, the severity of mobility loss is based on the location of the child’s lesion on their spine, how large it is and how many nerves it may have impacted. Spina bifida is often referred to as a “snowflake condition,” meaning that no two individuals will ever be impacted identically.

Two people on a sidewalk, one a young adult in a wheelchair holding his hand out to a young boy using assistive walking equipment

Many parents fear that their children born with spina bifida may never walk, and it’s true some are born paralyzed due to their birth defect. But just because someone has spina bifida does not mean they will never walk.

Redefining Spina Bifida
Redefining Spina Bifida

Many children born with spina bifida require braces, walkers or a wheelchair for mobility.

Two boys walking outdoors

Children born with spina bifida can attend regular physical therapy to help build the strength in their lower extremities.

Black and white photo of little boy using a walker

Sometimes, living with spina bifida is part of what makes them more determined individuals. All of the challenges they might experience with their mobility won’t keep them from living a great life.

Black and white photo of young adult in a wheelchair on a sidewalk

Those who are able to take steps without support certainly learn to appreciate every single step. Spina bifida is a complex birth defect, and though a person may have mobility early in life, more complicated surgeries may be required on the spine, which may further impact their mobility.

Redefining Spina Bifida
Redefining Spina Bifida

These kids are also some of the bravest kids I’ve ever met. Some children only require one or two surgeries when they are first born, and others end up needing many more surgeries and spending countless nights in the hospital.

Boy in blue shirt with dog

Children with spina bifida are often blessed with families who provide the most unconditional love for their children. All of the medical moments along the way can be trying, but sometimes it helps remind us what’s most important in life and bring us closer to one another.

Black and white photo of woman with glasses hugging child

It’s easy to fear how having a child with spina bifida might impact a family. The children with spina bifida I’ve known have some of the most loving, protective and dedicated siblings.

Two girls sitting on the sidewalk

I’m often reminded that the joy within a child with spina bifida is often what gives us the strength to get through the trials that come with living with spina bifida. One thing is for sure: Children with spina bifida are just as beautiful as any other child.

Girl in yellow shirt

Some may question the quality of life of a person living with spina bifida. Children born with spina bifida often go on to lead amazing lives, and hold careers as doctors, teachers, nurses, musicians and writers.

Little boy in white shirt looking up at the camera

Many born with spina bifida are also among the most ambitious and adventurous individuals I’ve ever met.

Boy in white shirt standing in puddle on a street

Some children born with spina bifida are known to experience learning challenges, but I find they are some of the most curious and brilliant minds.

Redefining Spina Bifida
Redefining Spina Bifida

The children born with spina bifida I’ve met are also some of the happiest kids. Regardless of how many medical moments they may endure, they are almost always found smiling.

Girl smiling and looking down

I’ve given you so many hopeful things that help you realize these kids really are amazing, right? They really, truly are.

Boy in white polo shirt

It’s much easier to create optimism once you’ve had, or come to know a child with spina bifida. But when a parent is expecting a child with spina bifida, it seems like one of the most heartbreaking diagnoses a person can receive. Most parents only dream of having a perfectly healthy baby. No one ever dreams of having a child with spina bifida. Along with the diagnosis brings instant fear of what may be “wrong” with their baby.

Redefining Spina Bifida
Redefining Spina Bifida

But, just because a baby is born with a birth defect doesn’t mean they won’t still lead an amazing life. Yes, it’s true – they may require additional care. Children born with spina bifida have 13 times greater medical expenses than the average child. In addition to mobility and learning challenges, individuals born with spina bifida are often born with bladder and bowel challenges, curvature of the spine or scoliosis, and some experience osteoporosis later in life. Unfortunately, spina bifida has no cure. A person born with this birth defect will endure the complications of living with it for their entire life.

Father holding baby

Sleeping baby

Mother holding baby

I want to encourage you to help embrace those who are born with spina bifida. The next time you learn someone was born with spina bifida, don’t ask “what’s wrong” with the person – instead, try to recognize that they are just as amazing as any other person.

To see more pictures, check out Redefining Spina Bifida.

Editor’s note: Originally, this story indicated that spina bifida is the most common, permanently disabiling birth defect. This is what the Spina Bifida Association says: “Spina bifida is the most common permanently disabiling birth defect in the United States.” According to the CDC, “CP [cerebral palsy] is the most common motor disability in childhood.” Based on this, we updated the story to reflect that spina bifida is one of the most common permanently disabling birth defects.

 For more information, visit the original post on Illuminate.

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When Your Second Child Doesn’t Have a Disability

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It hit me on our first night home. I was sitting in bed, a three-day-old baby in my arms and the heavy hush of evening all around me, when I felt it. It hit me like being woken up from a dream, like a clock chime at midnight or like a broken spell. It hit me the way truth always does when you’ve been keeping it at arms length.

This baby was so easy – and easy was much harder than I expected.

They tried to IMG_8256-e1433392434393 tell me. Throughout my second pregnancy I heard the words repeated by friends and family, coworkers and acquaintances, over and over again – it’s going to be so much easier this time around. They said it with such confidence, like kindhearted fortune tellers. They said it as if they knew something I didn’t. This baby would be easy. This time around would be different.

I won’t deny that the birth of my first was difficult. My son was diagnosed with Spina Bifida, a permanently disabling birth defect of the spine, at our 20-week ultrasound, and the tide of grief that carried me through those final weeks of pregnancy was consuming and deep. Still, I could prepare.

By the time he made his entrance, I knew his diagnoses forwards and back. I was prepared to have him whisked away from me after his birth. I was prepared for the five-hour spinal surgery and the placement of a shunt in his brain that would take place just days after his arrival. Even when we brought him home and I watched him struggling to breathe, turning from pale to gray to blue. Even when we returned to the hospital in a panic and learned three months later that he had severe obstructive sleep apnea and would undergo surgery for a tracheotomy. Even when it was hard – I was prepared. But nothing could prepare me for this second time around.

Nothing could prepare me for easy.

I remember a moment in the hospital. I was holding my daughter when suddenly the silence was deafening. There were no beeping monitors, no cords, no wires, nothing tethering her to this place. It was lovely, like a dream. The kind of dream where you’re weightless and flying, everything around you is light and nothing is out of reach. The two of us were floating, lighter than air and steady as the breeze.

But just as the beauty overwhelmed me, the sorrow did too. Because sometimes when you’re flying, you look down. And when I looked down, it was like I could see the other half of myself on the ground below. The half of myself that lived in the Neonatal Intensive Care Unit and wept in the night and feared and despaired. And she was looking up at me. And she was jealous. And she was angry.

It’s like I was torn in two.

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Here I was, the woman I wanted to be two years ago. The mother I planned on becoming. The story I would have written for myself – for my son. But I wasn’t that mother, not fully. And I never could be. You can’t go back, you know? You can’t unsee or unfeel or ungrieve. You can’t unlive the life you’ve lived so far. The never-going-backness of it was crushing. I wanted to be up there. I wanted my son and his first few harrowing weeks of life to be up there too. I wanted us all to have it so easy. It wasn’t fair.

I fought gravity, saying “No no no. This is what I wanted. This is where I belong. This is the mother I am supposed to be. Not that woman down below. Let her be forgotten. Let her sink away.” But even my fight was in vain and even my wanting was painful. Because that heavy yearning, that pull towards easy, was hedged in by guilt. Because the things I wanted to forget, the things I wanted to change, were tethered in an unbreakable line to the little boy I loved with a fierceness that trembles me.

And so, those first few weeks with my daughter were spent at war. At war with myself and the mothers within me. I tried to strike a balance. I tried to give vent to the grief while drinking in the very beauty that sustained it. I spent my days in a cloud of joy and my nights weeping in the darkness. Every high was a low. Every single easy – the smooth curve of her back unbound by gauze and tape, the morning change of her clothes, where there was no part of her I wasn’t allowed to touch, the steady breathing that just happened without prompting – was a unique kind of hard.

I guess that’s the hard part of easy.

It opens a door to what might have been. It breaks you in two. It takes you on a weekend getaway to Italy, when all the while you know your home is in Holland. And Holland is beautiful, but Italy is too, and now your heart is broken all over again.

Except it’s not. Not really.

You should know that the hard parts of easy get easier. And when you’re divided, you can see in all directions.

I guess that’s what I’ve figured out this second time around. I guess I’m learning to live in two places. I am letting each part of myself, each varied experience, have a voice. I am letting each be recognized. And if you’re a mother like me, I think you should too.

Because, without the flying, we might never see the beauty below.

The linking of rivers. The crosshatch fields of purple and green. The connectedness of each crevice and cliff and crag.

And without standing on the ground?

We might never feel the sun.

We might never see the sky.

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This post was originally featured on What Do You Do, Dear?

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That Time I Defaced My Son's Developmental Questionnaire

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A few weeks back I realized that my son never had his 2-year-old well check. Whoops. Somewhere in the chaos of sleep studies and trach removal and clinic appointments, I just plain forgot to schedule it. But since practicing a better-late-than-never parenting philosophy seems to be working out so far, I went ahead and made the appointment (nine months late) to coincide with his little sister’s 1-month checkup.

Two birds. One stone. No problem.

Except for one little thing – one teeny problem I’d completely forgotten about: the Ages & Stages Questionnaire (or “ASQ” if you’re short on time).

A photo of the ASQ-3 24 Month Questionnaire

Some of you may remember my last run in with this little monsterbut for those of you who don’t, let me enlighten you. The ASQ is given to parents to complete before their little one’s well check. It’s a screening tool designed to identify and pinpoint developmental delays in children. In other words (for you parents of children with special needs) it’s a soulless torture device made up of questions that can only be described as highly presumptuous and borderline absurd.

Pardon my French, but this test is a fart face of the highest caliber.

The questions make it impossible to ignore the things my child can’t do. In fact, it was created to highlight each and every can’t while assuming so many cans that just don’t apply to us. For example, it doesn’t say, “Can your child jump?” Instead, it says, “When your child jumps, does he lift both feet off the ground?” What a jerk, amiright?

A photo of the author's son in a wheelchair with the thought bubble, "Do wheelies count?"

I’ll admit, the form is extremely helpful for catching delays in typically developing children but, when your child’s delays are already identified, the ASQ is mainly helpful for crushing your spirit and leaving you to perish in a steaming puddle of your own tears. If your positive outlook is like a slug, then the ASQ is like a pound of table salt. It melts away your good feelings until they’re nothing but a sticky mess on the pavement grossing out your mom (at least that’s how it worked when I was a kid).

Which brings me to last week when the friendly receptionist handed me my son’s well check forms. Tucked inside was the dreaded developmental questionnaire, which I shoved to the bottom of the stack and actively ignored. Truth be told, I’m pretty sure I could have left it blank. Our doctor would understand and besides, there wasn’t much it could tell us that we didn’t already know. I could have ignored it completely. I considered doing just that. But then I got to thinking…

I thought about all those ridiculous questions. About gross motor and fine motor and jumping and stringing pasta necklaces. I thought about my son and why all this stuff is so important and why sometimes, maybe, it isn’t. I thought about it until I got tickled and then my tickles turned into giggles and my giggles turned into big maniacal chuckles.

What if I didn’t take this thing so seriously?

What if I laughed in the face of all those nevers and can’ts and shoulds?

What if, instead of letting the ASQ control my feelings, I controlled the ASQ?

So, after the little ones were (glory of glories) both asleep for the night, I grabbed a pen, sat down at the table, and got to work.

Suck a lemon, ASQ. I‘m going to make you fun if it kills me.
(And, yes, the following is indeed the copy I turned in at the doctor’s office.)

Looks like these kids need a makeover…

A photo of the Ages & Stages Questionnaire

That’s more like it…

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Image of a child sitting in a drawn-on wheelchair holding a sign that says "That's how I roll"

Good question…

Note added to ASQ: "We have never seen him walk, run, or climb, so I'm not sure. He has chosen to abstain from these activities as a form of protest against his mother's long-time ban on nose picking."

Note added to ASQ: He uses teleportation (answering the question: "If your child wants something she cannot reach, does she find a chair or box to stand on to reach it (for example, to get a toy on a counter or to 'help' you in the kitchen)?"

And of course, his very own addendum (just like last time). Because the other questions are a grossly inadequate representation of his greatness…

"Addendum for Simeon," a list written on the ASQ

I own you, ASQ. Eat. My. Shorts.

Special needs or not, I think everyone deserves their own specialized questionnaire. So tell me parents, what questions would be on your kid’s addendum? Are they a phenomenal dancer? An expert ice-cream sampler? A wheelie-popping-daredevil? (Or, if you’re not a parent, what questions would be on an addendum made specifically for you?)

This post originally appeared on What Do You Do, Dear?

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To the Mother Crying Over Her Baby's Spina Bifida Diagnosis

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Dear me on diagnosis day,

The ultrasound technician, the maternal fetal specialist and the neurosurgeon finally all exited the room, and I see you break down sobbing, alone with your husband. The floodgates have been reopened.

After seeing three different doctors at three separate practices, each with their own ultrasounds and testing, you’ve been given three different spina bifida diagnoses for your unborn daughter, each progressively worse. This one, the third and final diagnosis, brought with it a good chance that your daughter would never walk. I know you’re absolutely heartbroken. You spend the remainder of your pregnancy crying. Every day, you cry. You mourn for the healthy, happy, perfect baby girl you’d always wanted but would never have. You dread her differences that will make her stand out from other children. You fear she won’t get to do all the things other people will do. You grieve for her additional struggles in life. And you’re overwhelmed with all the aspects of care she might require.

Looking back, I see you, a heartbroken mother whose soul is being crushed by this diagnosis. Everything you’d envisioned for the future is changed, and coping with that struggle is often more than you can bear.

Come here, let’s leave this hospital room. Let me show you your daughter now, as a 7-month-old.

baby with spina bifida

She’s absolutely beautiful, isn’t she? Look how she smiles in sheer delight just at the sight of you. That smile illuminates the whole house with happiness. She’s perfect in every way. She’s completely, without a doubt, the healthy, happy, perfect baby girl you’ve always dreamed of. She is the best thing to ever happen to you. There’s no more need to cry. There’s no need to mourn your daughter’s future life. She will be fine. She is fine. You will be fine, too. Her life will be just as fulfilling and beautiful as you’d envisioned for her. This diagnosis is less scary in person than it is on paper. She will have some struggles, but it’s nothing you can’t handle, I promise.

As I leave you in the hospital room, wipe your tears. Please, don’t spend another night crying. Celebrate your pregnancy and get excited for the arrival of your perfect daughter. I can’t wait for you to hold her. And she can’t wait to meet you.

mom holding baby

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This Kid's Mister Rogers Costume Is Definitely the Cutest One in the Neighborhood

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This. Costume. Is. Awesome.

OK, we may be a little biased — after all, one of our Mighty contributors, Mary Evelyn Smith, made it. But seriously, it’s stellar.

Check out the photos below of Simeon decked out as Mister Rogers. His wheelchair only makes the costume better.

“Let me tell you: this kid digs Fred Rogers,” Smith writes on her blog, “What Do You Do, Dear?” “He requests an episode each night after dinner and regularly begs us to serenade him with tunes from the show.”

You’re definitely the coolest kid in the neighborhood, Simeon.

collage of boy dressed up in a mister rogers costume

father pushes around boy in his mister rogers costume

Read how Smith made Simeon’s costume and visit her blog for more awesome writing.

Mary Evelyn Smith on The Mighty:
On Learning My Second Child Can Move Her Legs
When a Little Girl Felt Sorry for My Son
If I Could Have My Son Without His Disability, Would I?

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John Mellencamp Opens Up About Finding the Man Responsible for Saving His Life

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Above is proof that the challenges we face in life can make us stronger.

John Mellencamp had no idea he was born with spina bifida until he discovered a scar on the back of his neck around the age of 9 or 10, according to CBS News. As it turned out, the legendary performer from Seymour, Indiana, was given an experimental operation as an infant that saved his life at a time when most babies born with the birth defect didn’t survive.

The 18-hour-long procedure that took place in 1951 was one of three operations on babies with spina bifida at Riley Hospital for Children in Indianapolis. Mellencamp is the only survivor of the three.

The unlikely success of his operation left Mellencamp with a feeling of luck that’s followed him his whole life, according to his interview in Men’s Journal. He told the magazine:

My grandmother told me for my entire life — everyday, “John, you’re the luckiest boy in the world.” And when you hear that everyday from somebody you actually start to believe it, which made me adventurous, which made me not afraid to try things, which made me not care about stopping myself from doing things that people said you shouldn’t be doing.

Just last month, Mellencamp met the neurosurgeon who performed the pioneering operation on him nearly 63 years ago, according to CBS News. Dr. Robert Heimburger, 97, met him at the hospital where the surgery took place.

Mellencamp recently announced an upcoming tour for his new album “Plain Spoken,” according to his website.  The 80-show tour, beginning in January 2015, will culminate in a performance at Indianapolis’s Bankers Life Fieldhouse on August 4th. A portion of the proceeds from this show will be donated to the Riley Children’s Foundation, which supports the Hospital for Children where the singer’s surgery took place over six decades ago.

Check out Mellencamp’s interview with CBS above. 

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