Raising, and Learning From, a Special Child
Just after our daughter Zeesy’s first birthday, she suffered her first grand mal seizure. Optimism is ingrained in our Chassidic culture, so we were extremely hopeful that this would pass, as it does for many infants. But time didn’t heal our Zeesy. While she grew in so many ways over the next three years, she struggled with so much that other children her age take for granted: walking, potty training, speaking, sleeping through the night — but most of all, she was having intolerable meltdowns that by all standards were more like semi-seizures or blackouts.
Our family’s remarkable pediatrician, Dr. Sheila Idzerda, worked tirelessly to evaluate Zeesy’s condition, but with no pediatric neurologist in Montana at that time, we were at a loss. In November of 2014, with the help of dear friends, we discovered a one-of-a-kind pediatric neurology center in New Jersey and secured a three-day appointment for Zeesy. My wife Chavie traveled to the Garden State, while I held down the fort with the other two children in Montana.
During the visit, the specialists discovered so much about Zeesy that we wished we had known years earlier. But such is the world of child development; it can take time to figure it all out. In my heart of hearts, I was still hoping it would be “nothing” — or at least an “easy fix.” But that wasn’t in the cards for us.
Chavie called again from New Jersey that evening and started using terms like “genetic disorder” and “genetic testing;” I didn’t know what exactly it meant but I felt like I had been punched in the gut. My daughter, our second child, now has special needs? As Chavie spoke, I was in a daze — not fully grasping, or even hearing, everything she was sharing, but I got the point: No cure. Very rare condition. Our life is about to change forever.
After returning home, Zeesy underwent genetic testing at Shodair Children’s Hospital in Helena and a spinal tap in Billings. The result was conclusive: Zeesy had Glut-1: “Glucose Transporter Type 1 Deficiency Syndrome — a genetic disorder that impairs brain metabolism. Glucose isn’t transported properly into the brain, leaving it starving for the energy it needs to grow and function.
Like most parents, Chavie and I have love for our children that is immeasurable. Adopting a child creates a bond between parent and child that is truly indescribable. Yet, to be frank, I never wanted or planned to raise a special needs child. When asked, “Do you want to adopt a child with special needs?” I’d say, “I admire those that are, but it’s not something I’m up to.” Yet, here I was, raising a child with a very rare disorder only found in 500 people worldwide. I wasn’t raising Zeesy because I thought I was cut out for it; I was doing it because God knew that Chavie and I were.
I’m not a perfect parent, not by any stretch of the imagination. I struggle. I strive to be calm and thoughtful 24/7, but don’t always succeed. Yet, Zeesy has made me a different dad. I have more patience, more understanding, more compassion, more strength and more love. I am not only a better father to Zeesy and her siblings, but I am a better husband, better rabbi and, I believe, a better human being because of our Zeesy.
Zeesy revealed a part of me that I never knew existed.
While there is still no cure for Glut-1, there is a remedy for development: the ketogenic diet. Chavie, with boundless patience and love, prepares Zeesy’s measured meals, so that her delicate brain receives an alternate source of energy, starving it from the normal glucose based energy and giving it high fat energy. In the 18 months since Zeesy started this diet, she has grown and developed exponentially, but the workload is enormous. Zeesy attends Bozeman Montessori school, where the education is incredible: she’s treated with occupational and physical therapy, and takes multiple medications and vitamins for her well-being.
Chavie and I look at each other every day and thank God for Zeesy. She has taught us that together we can persevere and thrive — for her, for her siblings, for ourselves and for the world around us.
It’s a blessing to have special children.
Rabbi Chaim Bruk is Executive Director of Chabad Lubavitch of Montana& Spiritual Leader of The Shul of Bozeman. He can be reached at firstname.lastname@example.org.