“Savanna’s still severely allergic to all nuts, even walnuts now.” I already wasn’t crazy about the allergist, who only twenty minutes before had practically tricked our five-year old into believing that the coming prick to test her allergies was merely a bunch of rows of stickers he would place on her arm. Caught off-guard, after the unexpected penetration, she had wailed in surprised pain, tears streaming down her cheeks. Looking up at me, questioning how I could have allowed the deception to happen, I bent down and held her in my arms.
Based on experience we had thought she seemed allergic to dairy since infancy. To our dismay, the results showed Savanna was allergic to not only dairy, but also eggs, soy, and all nuts but walnuts. When we brought our baby daughter to our pediatrician, she reassured us that there was a strong likelihood she would grow out of all of her allergies by age two, except for nuts.
Now more than four years later and about to attend a public kindergarten, John and I had decided to get her retested so we could be certain of not only what she was currently allergic to, but the severity. The allergist continued by drawing a number 4 +++++ on the medical results paper until the plus signs extended to the edge of the page. “A ‘1’ means mild, and ‘4’ means severe. I am trying to show you how significant Savanna’s nut allergy is.” It will most likely be the biggest challenge of all of your lives raising her. Still holding her tight, with my shortened forearms and one-fingered hands, I couldn’t help but to think of the irony in his comment.
When I was invited to Israel to speak on the subject of my Don’t Hide It, Flaunt It efforts, we thought it would be a great opportunity to show the kids Israel. On our friends’ recommendation we hired a local guide named Avi for much of the week. The country was not new to either of us, as I had lived in Jerusalem as a child and John had been there repeatedly for past vacations and work. But we knew how important and fortunate we were to be able to connect Ethan, Charlie and Savanna with their Jewish roots. The trip was practically magical for all of us, as we soaked up the beauty and history of the country. Avi was a pro, and shared key pieces of history while simultaneously ‘surprising’ our children with additional excitement, such as feeding kangaroos and parrots on the way to the site of an ancient amphitheater at Beit She’an, searching for ancient treasures as part of an archeological dig on the way to visit the Old City of Jerusalem, and swinging by Galita, a chocolate factory on our way to visit a Kibbutz in the Golan Heights.
While walking around the ruins at Beit She’an I asked Avi what he did if someone was not able to walk well? Did he ever refuse to guide them due to the significant amount of walking required, often on uneven surfaces? He turned to me and said in a sincere voice, “Meg, as long as they have the spirit to do something, then who am I to hold them back?” I turned to him and smiled as he added, “If they are willing and determined, all it takes is a scooter that I rent for them and we’re good to go enjoy Israel!” His words stuck with me on several levels throughout the week, even after our tour was completed and we spent our remaining days in Tel Aviv with friends.
Savanna’s nut allergy. For example, at Galita they could not assure us even the plain chocolate hadn’t been tainted. So, trying to make the most of it, I designated Savanna the
resident photographer hoping that time with my iPhone would distract her as the boys delighted in getting their one and two-fingered hands drenched in chocolate and candy. Again, after lunching with some of John’s old friends in Tel Aviv we wandered through a neighborhood with dessert on our minds. “You owe us ice-cream, Aba! You promised,
remember?” It was our friend’s son, who was Savanna’s age. Immediately their two other children and ours jumped up and down in agreement. However, when we arrived at a popular and crowded gelateria and the children began to yell out whatever flavor they fancied I asked our friend to confirm in Hebrew that the soft-serve yogurt hadn’t been tainted by the store using the device to serve other types of ice-cream. We simply couldn’t take a chance. As soon as we saw our friend’s face fall and give a thumbs-down my own heart sank. Within seconds I was crouched with Savanna in tears in my arms outside, as all the other kids ate their cones nearby.
But then, while still on vacation, my close friend Lisa sent me a New York Times article called, “Hand of a Superhero” by Jacqueline Mroz. The piece was about a thirteen-year-old, Dawson Riverman, who was born with only three fingers on his right hand. According to the piece, as a young child Dawson struggled to perform even the simplest of tasks, like tying his shoes or holding a ball (I knew the feeling). Eventually, Dawson’s parents learned about prosthetic which was really functional and could be made inexpensively on a 3-D printer. It was new technology. “Now he can ride a bike and hold a baseball bat.” The article went on to describe how the prosthetic hands are now being made for thousands, but also acknowledged they do not always work for every child. Knowing my own life story of wriggling out of a prosthetic as a young child, with a determined spirit to ‘do it myselfie,” Lisa asked what I thought about the article. Ironically, little did she know that the same week I had received an unexpected email from someone named ‘Dan’ that read: “I’m a member of the Google community, ‘Enabling the Future.’ People world-wide, use 3-d printers to make prosthetic hands & arms, for children of all ages, free of cost.”
And so, for many reasons, the question was not only a good one, it certainly hit home. My immediate, impulsive reaction was to denounce the 3-D printer hands, feeling a rising frustration with parents that couldn’t imagine their child could be able to function ‘normally’ with less than ten fingers. Why didn’t they wait and see what might be possible rather than rushing to the conclusion that their child’s life would be limited in any meaningful way? Certainly, even beyond my own life and physical accomplishments with only one finger on each hand, our sons are living proof that you don’t need 10 fingers to play most sports (including baseball) among others. However, nothing is ever that simple and, after digesting the article a bit more as we walked with Avi around the top of Masada and then later as our sons pleaded for ice-cream at our next rest-stop, it occurred to me that I needed to re-evaluate my view. In the end, I had to conclude that if a child born with a physical difference has the spirit and ambition to move forward and try new and difficult things, who am I to judge their route to success?
I am certain that regardless of how much our children thrive, strangers will continue stare at our sons (and me for that matter) and presume our lives must be hard and even hopeless in many regards. However, what I understand now is that the key to success and overcoming challenges is the same for everyone — whether they employ sheer persistence (like us), 3-D printer prosthetics, scooters or whatever. The key is determination and spirit. More than any history lesson, Avi impacted me most with this particular guidance.
Ironically, given her severe nut allergy, the most challenged person in our family during our visit to Israel was our daughter, Savanna. For her, having a strong spirit is also necessary, but for a different reason. For her there is no remedy. Her challenge is to develop the wisdom and fortitude to understand and accept that no one’s life, anywhere in the world, is ever truly perfect.
In the end, and to Savanna’s delight, we found that Aroma Coffee shops, a local chain, did have an ice-cream dispenser that was nut free. And also, after careful consideration, I let Savanna decorate the chocolate candies her brothers created at Galita, as long as she washed her hands well afterwards. In that sense perhaps I am more like Dawson’s parents where I don’t personally relate to my child’s difference, but have the spirit to let her keep trying until we both learn what is possible.