Written by Natalie:
Every parent to a special needs child has that story. You know the one, the one we never wanted to have. The diagnosis story. As an introduction, I thought I would share ours. It was the first of many diagnosis stories to follow.
So, how was my daughter Mandy diagnosed?
The answer to that question is a question. Which diagnosis?
All of the subsequent diagnoses started with the first one. It all started with a news story we didn’t read about; a song we had rarely heard.
* * *
It was Oct. 23, 2001, our baby girl’s first birthday. She and I were at the pediatrician’s office for her well-baby check up.
She was a beautiful and healthy little girl. Big blue eyes, no hair to speak of, but what she had was platinum blonde. And a dimple that made my heart melt every time she smiled.
I had asked every time we had been in that year about these odd birthmarks that just kept showing up. They were an odd color, the color of coffee with cream, some large, some small.
But, she was healthy, growing well, hitting all of her milestones. So, I was comfortable with the answer I always got: “They are just birthmarks.”
So I asked again, just to hear them say “They are just birthmarks” one more time. What happened next was going to change things forever.
* * *
On October 7, 2001, an article ran in The Dallas Morning News. A kid country singer named Billy Gilman was to perform later that week at the Texas State Fair. His radio hit at the time was a song called “Elisabeth,” about a girl who was facing some serious medical struggles.
Elisabeth was a real person; she was 21, she lived in the Dallas area, and her aunt had written the song.
Elisabeth was going to meet the 13-year-old country singer at the fair. The article noted that the singer was very excited to meet Elisabeth for the first time. “That’s so weird to me,” she said. “I mean, he’s the big-time star. It should be the other way around.”
The article went on to describe Elisabeth’s illness, an illness with which she had been diagnosed as a baby and had now forced her to interrupt her college career.
I didn’t read the story. Ronnie worked at the Morning News at the time; it’s quite possible that he had produced the page on which the story ran. He didn’t see the story, or if he did, it didn’t register with him. We weren’t huge Billy Gilman fans, and we had no plans to go to the State Fair that year.
Our pediatrician, however, had read the story. She confirmed this for me later when she admitted that the reason she connected the dots, or the birthmarks in this case, was this story.
* * *
“Doctor, she still keeps getting more of these birthmarks that I have asked about before. Is it anything we should be concerned about?”
I didn’t recognize the face at the time — that face that doctors make when they are going to have to tell you something you will not want to hear. I have seen it numerous times since that day and now recognize it from 40 paces away and it never fails to make my heart skip a beat.
She looked at me and said, “You know what? Let me go get one of my partners. I will be right back.”
Well, that was kind of odd. So I waited, thinking we were at most dealing some dermatology issue.
The pediatrician came back with one of her partners.
He made the same face. Alarm bells started going off in my head.
He said, “Let me go get Dr Head-Of-The-Practice. I will be right back.”
Oh God. Something is wrong. The alarm bells in my head were likely audible to all by now.
Dr Head-Of-The-Practice walked in. He took off her diaper, he lifted up her arms, looked at her armpits and looked at me and said, “I think your daughter has cbwfgurigfsbcgducgwfbwejfv and we need to do an MRI to look for brain tumors.”
And then he left the room.
That was it.
And just like that, I couldn’t breathe. I had never heard the name of whatever disease he had just said.
The original pediatrician sat down with me. I remember looking at her and saying, “I don’t understand. I didn’t understand the word he said. Please write it down for me.”
We talked for a few more minutes and she handed me a piece of paper with the word neurofibromatosis written on it.
I remember walking to the car with her. I sat down in the driver’s seat and held her on my lap for I don’t know how long before I put her in her car seat.
I called Ronnie at work and told him what just happened. I read him the big word off the piece of paper. I spelled it for him so he could punch it into Google. N-e-u-r-o-f-i-b-r-o-m-a-t-o-s-i-s.
One of the first hits from the search results: A story from The Dallas Morning News from two weeks before. A story about the Texas State Fair, and Billy Gilman, and Elisabeth. The second paragraph:
She’s had neurofibromatosis, a genetic disorder that causes small, mostly benign growths to form on her nerves, since she was 2 years old.
* * *
I remember driving home from the hospital after the MRI thinking if I could just drive far enough away, we could somehow outrun what they were saying.
That day began this journey. Everything on that first MRI was fine. “Unremarkable,” I think, was the official word they used.
It was followed by DNA analysis that confirmed she did indeed have neurofibromatosis type 1. And then many more scans, some more remarkable than others, but none more remarkable than the one from Feb. 18 of last year. That was the scan that said one of those brain tumors we had been told we needed to go look for on October 23, 2001 had found us. That was the scan that prompted surgery to put in a port and started a long road of chemotherapy. But, it all started with a song back in October 2001.