Raising a child with special needs is no small feat. Our daughter Zeesy was diagnosed at a very young age with a rare disorder called GLUT1 deficiency, which is a genetic metabolic disorder associated with a deficiency of GLUT1, the protein that transports glucose across the blood brain barrier. It’s complex and rare, so finding a cure is an uphill battle, but, despite her challenges, Zeesy lives life with fervor, optimism, and true simchas ha’chaim.
Last Wednesday, over 80 women and girls, including all the girls and female teachers from her local public school, which Zeesy adores, joined together to celebrate Zeesy’s bas mitzvah. The food was mouthwatering, the atmosphere was uplifting, the corsage flower-bracelet-making was so much fun, and Chavie’s words to Zeesy were especially meaningful. In Chavie’s words:
“Zeesy entered the world back in 2010. From day one she was unique in her development, her cognition, her way of learning. Yet Zeesy, through incredible work and determination, has not only made lemonade out of lemons, but has shown us that lemons are a beautiful, tasteful, mouthwatering fruit that adds so much flavor and pleasure to the simplicity and monotony of life. Zeesy doesn’t spend her days bemoaning her lot in life, focusing on the fact that she may be different; quite the contrary—she lives it up, celebrating each day, each moment, each human interaction, each teacher, each classmate, each life experience, as something positive, inspiring, delightful, and upbeat.
“Every flower in a garden is special. It grows in a unique style, it is nurtured and watered according to its particular needs, its colors are distinctive; each flower adds so much to the garden of life. Years ago, we took Chaya and Zeesy to Butchart Gardens in Victoria, on Vancouver Island. It was mind-blowing—so warm, so attractive, so colorful. It wasn’t world-renowned because all the flowers looked the same and were alike; rather, what made it special was the diversity of flowers, each embedded with a G-d spark that made it stand out to be a gorgeous creation in its own right.
“Zeesy is the queen of our community garden because she lives life with the attitude of appreciating each moment as a special flower. Sure, she has her moments with siblings and friends, and not every day is easy and smooth sailing, but you’ve got to see Zeesy about 15 minutes after waking up each morning: She thanks G-d for life, washes negel vasser, which is the traditional purification of hands, she drinks her special breakfast shake, gets her meds, and before you know it, she’s bouncing toward the door to have another awesome day at school. Today is music, today is library, today is therapy before school with Hannah, today I have Hebrew learning with Zissel, today I am going to have a call with Shana, my counselor from Camp Simcha. She is a breath of fresh air; she is a beacon of optimism and positivity.
“Our dear Rebbe, of blessed memory, even well into his ninth decade, would stand each Sunday giving out dollars to encourage charity and kindness. Some Sundays he would stand for as long as eight hours without interruption. Once, an elderly woman could not contain herself and burst out: ‘Rebbe, how do you do it? How is it that you do not tire?’ The Rebbe smiled and replied, “Every soul is a diamond. Can one grow tired of counting diamonds?’” Zeesy epitomizes this concept, always seeing others as sparkling gems, with the most positive of outlooks. She sees everyone as amazing and delightful.”
Zeesy also spoke so eloquently, with so much heart and poise. (If you want to watch her entire speech, please e-mail me and I will send you the link). Her words that gave me goosebumps and many tears of joy:
“In my short 12 years, I have had many challenges. I was born with GLUT1, a rare genetic disorder, and it has made many aspects of my life very difficult. From doctor visits to bloodwork, brain scans and special meals, unexplained crying episodes, and cramps that hurt a lot, and through it all, with my parents holding my hand, along with Dr. Idzerda and my medical team in Denver, I wade through the waters and have learned to be, as my mother said earlier, my unique flower in the world’s garden and to bud, bloom, and flourish as only I can.
“Some days I wonder, ‘Why me? Why can’t I be like everyone else? Why can’t I eat the same dinner as my family, go to the same summer camps as my sisters, travel without coolers filled with my magic food?’ But then I remember that I am Zeesy and G-d sent me to this world with a unique mission to inspire resilience, to brighten every person I encounter, and with my contagious smile melt so many hearts.
“Tonight, as we celebrate together, I am taking a deep breath, I am pausing, and I am counting my blessings. I am grateful for having each of you as an important part of my life and my journey. I turn to G-d tonight and ask Him to continue showering me with His infinite love, His remarkable blessings, so that I can continue to grow as a beacon of kindness and goodness to my classmates, my teachers, and my parents, and most of all to live it up, each moment of every day, and to never let my struggles get in the way of me being a bas Chabad, a student of the Rebbe and his legacy, and the best version of Zeesy Bruk possible.”
I am sharing Chavie and Zeesy’s words with you, because I think Zeesy’s life theme is the same as the theme of our Torah portion, Lech-Lecha. In it, we read about Avraham Avinu and Sarah Imeinu and their journey from Ur Kasdim to Canaan, later to be called Eretz Yisrael. The Rebbe addresses a basic question: Why do we first really hear about Avraham Avinu’s life when he’s 75, when Hashem commands him to head to the “land that I will show you?” In the Midrash we read about how he discovered G-d, broke his father Terach’s idols, was thrown into a fiery furnace by Nimrod or Amrafel, how he was the “Ivri,” the one on the “other side” of the river, fighting the pagans and their ridiculous beliefs, yet, in the Written Torah, all we have is his life from age 75 until his passing?
The Rebbe explains that Avraham Avinu became a Jew when he followed a G-dly command delivered to him by Hashem, from above to below. His discoveries are valuable and his personal journey is fascinating, and reading about it is really nice and can teach us a lot, which is why it’s mentioned in the Midrash, but to be a Jew, to be the Founding Father of Judaism, is all about epitomizing bittul, subservience to Hashem, doing what we are told, no questions asked, which is what Avraham did in Lech-Lecha. Even when it seems unreasonable or odd, being a Jew means sticking with Hashem through thick and thin.
Living as a Jew means to move forward in the direction that Hashem sends you, no matter what the circumstances of your particulars are at that time. Zeesy, in my view, lives that way. I don’t know if any of my other children, or any children at all, could handle such challenges with the grace and acceptance that Zeesy does, but she lives a life of Lech-Lecha, saying to herself, “I must move forward because there is a world that needs me and a G-d who wants me to make a difference in my own way.”
A couple of days ago, 13 Jews, men and women, from around the State of Montana, got together at our Shul in Bozeman to receive Chevra Kadisha training from Rabbi Jay Lyons, an expert in Jewish burial from Boca Raton. It was beautiful to see the devotion of our local Jewish community, who will finally be able to participate in such a special mitzvah, while lifting the burden off of the shluchim who are currently the sole Chevra Kadisha members for the entire state and need to be on call 24/7 in this regard.
The one who motivated us to make this happen was a local Yid in Kalispell named Gavriel, who is a beautiful ger, who converted to being a Yid with his wife, Devorah, some 20 years ago. When I was a yeshiva student visiting Montana in 2004 and 2005, I would stay with Gavriel and Devorah and could eat at their home as everything was glatt kosher and chalav Yisrael. They, like Avraham Avinu, were warm, hospitable, and authentic. Last Teves, Devorah passed away, and Gavriel, living as a Lech-Lecha Jew, focusing on what Hashem wants from him at that moment, decided even before she was buried to dedicate the Montana Chevra Kadisha in memory of his beloved wife. This week we were able to start a process of making it a reality across all of Big Sky Country.
Noach was righteous but he was no Avraham. Hashem told him to leave the Ark and after bringing a korban, an offering to Hashem, he got drunk and humiliated himself. He was not the founder of Am Yisrael. Avraham Avinu was a powerhouse who sought to be an “eved Hashem,” a servant of Hashem, and for that attitude of “onward and upward,” never making it about himself, he merited being the founder of the greatest nation to ever exist, Am Yisrael. n
Rabbi Chaim Bruk is co-CEO of Chabad Lubavitch of Montana and spiritual leader of The Shul of Bozeman. For comments or to partner in our holy work, e-mail rabbi@jewishmontana.com or visit JewishMontana.com/Donate.
