The Doctor Who Didn’t Describe My Baby as ‘Less Than’


There I was sitting in an exam room of the high risk OB-GYN office.

I had received the devastating news that something was terribly wrong with my pregnancy. Everything was a blur. Words like “termination” and “vegetive state” were being used.

Somehow I made it to the parking garage, where I plunked myself down on the filthy steps and burst into hot and fast-flowing tears.

What was I going to do?

How was I going to tell my husband?

Really, the question was, how I was I going to tell myself?

I needed answers and I needed them now, not weeks or months from today. Google was just not going to cut it. I got in my car and high-tailed it to the children’s hospital. They had doctors there, smart ones, who might have answers for me.

I wandered around the main area of the children’s hospital until I found a map and then I went to the neurology floor. I wanted to see if there was information, support groups, or some kind of guidance.

I needed something. Anything.

There I met a lovely lady with deep brown eyes. She asked if I had an appointment and I opened my mouth, but nothing came out. Then I started to cry. Again. This lovely lady handed me a box of tissues and I blurted out, “Something is wrong with my baby and they want me to abort.”

She picked up the phone and made a quick call. Luckily, it wasn’t to security to escort me out. She got up from her desk, took my hand and walked down a long hallway.

Just when I thought we had arrived we went through another set of doors and again down another long hallway. I went into an office with a small waiting area, and the lovely lady burst into the closed door and announced, “She needs to speak to you. Now.” She motioned for me to come in.

There he was, like the Wizard of Oz — the top neurologist in all of North America. He was sitting in a humble office in scrubs, talking on the phone with the operating room.

I sat down. I was awestruck that within a matter of minutes I was sitting before the man with the answers that people wait months to see. I believe this was no coincidence. I asked questions and he gave answers. I asked more questions and he gave more answers.

Me: What kind of quality of life will my baby have?

Oz: We judge quality of life based on our experience. Kids with traumatic brain disorders don’t see themselves as having “less than.” These people are the happiest, most content people in life. We (healthy/able people) are the ones who are miserable and who view lives as “less than.”

My jaw dropped. If there was any time to fall off a chair in utter shock, this was it. Our conversation was earth-shattering, mind-blowing and life-changing for me. It was exactly what I needed to hear.

I had been in the right place at the right time. I had waddled my hormonal, pregnant tush down the yellow brick road and barged into the office of one of the most successful neurologists in freakin’ North America.

At that moment, deep inside, I knew this was my path in life. Everything was going to be OK. Disability, disorder or disease — I knew I could do this.

unnamed-1

The Mighty is asking the following: Can you describe the moment someone changed the way you think about a disability or disease? If you’d like to participate, please send a blog post to [email protected]. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

Want to celebrate the human spirit? Like us on Facebook.

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


Find this story helpful? Share it with someone you care about.


Related to Uncategorized Disorders

Why I Work Hard to Remember the Struggles of My Misdiagnosis

Do you ever think about who you may have been in a past life? This is a question that I ponder every night before I fall asleep. And unlike many people, I know the answer to this question. In my previous life, I was a positive, optimistic, happy-go-lucky girl who just happened to be trapped [...]

There’s a Benefit to Being Teased by Your Siblings When You’re Sick

Dear Siblings, You were 6 and 4 years old when I came into this world, but you didn’t know it yet. When you awoke that Sunday morning, Nana and Papa were there instead of Mommy and Daddy. Nana and Papa tried to explain as best as they could to you both that your new baby [...]

The Much-Needed Change That’s Making Hospital Patients More Comfortable

Regardless of why you’re visiting the hospital, there’s one thing that almost certainly isn’t making your visit any easier — the hospital gown. Flimsy and paper-thin, patients have long complained about the gown’s antiquated design but haven’t seen any alternatives until recently. In 2010, the Cleveland Clinic teamed up with Diane von Furstenberg, an iconic fashion designer, to update its patient [...]

Hello, My Name Is Autism

I recently had the honor of being published on The Mighty. The site shared this post that I wrote about my son for World Autism Day. The post was meant to document his journey as well as raise awareness for autism and Asperger’s syndrome. I’ve had wonderful responses to it and, because of the post, have connected with fantastic moms of kids around [...]