By Karen Forman
“Life isn’t about waiting for the storm to pass. It’s about learning to dance in the rain.”
Diagnosis in hand, life began to brighten for us. Coincidently, the National Foundation for Ectodermal Dysplasias (NFED) Family Conference was scheduled a few weeks later in the suburbs of Chicago. My husband, Bob, and I were both nervous and excited about learning more about ectodermal dysplasia and meeting other families.
Supportive friends and family were close at hand and life with ectodermal dysplasia in those weeks became the norm. We knew no different. We promised ourselves that Evan would be brought up no different than any other child and we would just learn to deal and to adjust.
Our First Family Conference
I will never ever forget our first Family Conference, way smaller than any that most families with ectodermal dysplasias now will remember. We were a small group meeting at a local church in Downers Grove, Ill. This was a life-changing weekend for both Bob and I. Present were just a handful of families including the Spilbelers and Voras.
We had so much to learn and understand. NFED Founder and Executive Director at the time, Mary Kaye Richter, eloquently provided the reassurance we all needed with her very young son, Charley at hand. How closely Charley’s story resonated with us. The late Beverly Meier, NFED’s first employee, was at Mary Kaye’s side, brightening the days with her warmth and love.
A small and devoted Scientific Advisory Council presented, and we asked questions and got answers. The kids delighted in the pool for hours while the adults shared pizza and our stories, our concerns and our hopes for the future. We especially bonded with the Spilbelers and Voras. Our boys were all the same age and over the coming years grew up together at subsequent conferences. The kids enjoyed the times of their lives and were enriched by the families and friendships.
For me, meeting adults with ectodermal dysplasias was the most life-altering part of that weekend. Getting to know the late Chuck Root and Frank Hazzard gave me the determination and all the hope I needed. It was an inner confidence that I felt deep in my soul. After all, they were married and living the lives any mother could hope for their child. I could do this. They were married! That is what I needed to see and hear.
Finding My Inner Will
Evan was a charming, smart little guy who captured the love of most folks he met. Life was good.
Or, I thought it was.
One year later, Bob was diagnosed with a recurrence of malignant melanoma that would eventually take his life at 32 years old. Evan had just turned two years old. As a single mother with a child with ectodermal dysplasia at 32. I remember thinking this is not what I signed up for. I was again forced to remember how to dance in the rain. Thanks to an ever-devoted family and friends and an inner will you never know you have until you are forced to use it, I made it through.
As life began to again settle, my attention needed to be focused on Evan. At two, he was still taking a bottle. That needed to stop. There was no sign of any teeth coming in that cute little mouth of his. Evan had not yet seen a dentist, and that needed to happen, too.
As Evan and I began our discussions about teeth, he was convinced they would be red! Yep, Evan wanted red teeth. I actually wrote a kid’s book about Evan’s red teeth for the NFED. We read it over and over. There is nothing like prepping your child for what is to come.
Evan’s future pediatric dentist was hesitant. He had never worked with a child with ectodermal dysplasia before, and thought perhaps he was too young. I made a deal with him – I asked him to try and see what could be done. I convinced him we had nothing to lose. Mary Kaye had certainly prepped me for this, lots of sage advice.
Our first visit to the pediatric dentist’s office was truly remarkable. Of course it helped that Dr. Morgenstein was a colleague and friend of Bob’s, who was also a dentist. Who would have thought that the same day of our first dental visit we would actually leave with Evan’s first upper denture? It happened.
A small plate with four front teeth was made for Evan. With the help of a dedicated lab technician, it was done. The entire staff was focused on Evan leaving the office that very day with his first denture. Evan was so proud of his new teeth. What a smile. We had a party with cake that night. Evan showed off his new teeth to our family and we were again on our way.
First Teeth War Stories
All of us families with ectodermal dysplasia have war stories about our kids and those first teeth. Evan was no exception. There was that day when we were headed to New Jersey to spend the weekend with family. Off we went. Left the Washington D.C. suburbs and got all the way to the tunnel headed to Baltimore. You guessed it.
This sweet little voice from the back seat pipes up with “Mom, we forgot my teeth!” Of course that was why we were going, to show off! Yep, we turned around 45 minutes into our trip and headed back to get those teeth.
There was also that time when Evan came home from day care without his teeth. Yep, that night we spent going through all the trash at the day care center with Evan’s new dad, Dave. There will be more on that part of the story later.
Next, on to paying for those dentures, stay tuned.