Before I share my story with you, I would like to add a disclaimer. I can only share my personal experience and my perspective. In no shape or form do I intend to be judgmental or chas v’shalom put anyone down, just in case you happen to feel differently.
NEVER SAY NEVER
Have you ever felt so strongly about something and promised yourself, “I will never live there!” Or “This will never happen to me!” And boom! Just like that, you find yourself in the exact situations you were trying so hard to avoid like fire! This is precisely what happened to me. And you know what? I am so glad they did, in retrospect, these were the specific situations that changed my life forever. Read on, and I will take you on my little journey of life!
I was born in Samarkand, Uzbekistan and I am the youngest child in my family, with two brothers on top of me. Growing up, I enjoyed being spoiled and getting the attention of being the “baby” in the family.
Ever since I was a little girl, I had this love and yearning every time I would see a piano. My heart would literally burst out of my body, with a strong desire to learn to play. In my excitement, I would imagine myself excelling at perfectly using its keys and envision the beautiful tunes that would come out.
In 1993, when I was 9, my family immigrated to the United States and we settled in Detroit, Michigan. We were warmly welcomed by the Jewish community of Oak Park, and I went to Bais Yaakov. Shortly after, my parents divorced and with it came all the challenges of living with a single parent. I do want to note that my mother put her heart and soul into raising us and I am where I am today because of her.
After much nudging, my mother finally got me the most amazing piano teacher, Galina Yeverovich. She not only taught me to play the piano, but to also enjoy life and make the best of it. Her zest and love for life was contagious. Galina brought music to life and taught me to share my talent with others by taking her students to perform in various nursing homes and assisted living centers.
Although I had a good name and seemed popular among my peers in school, deep inside, I was struggling. I don’t know how to describe the feeling, but it was a feeling that felt like I do not belong, I am unworthy and a feeling like I will never succeed in life. I always felt others were moving mountains but here I was just doing the most mundane things. Looking back, I don’t know what I wanted from myself. I was only 16!
I graduated from Bais Yaakov Detroit and moved on to learn at Bais Yaakov Intensive Teacher’s Seminary in New York. It was then, when the shidduch pressure was on. And here came my first “I will never”….
Growing up in Detroit, I remember not having such positive vibes about Chabad Lubavitch. Interestingly though, throughout the years, I had great respect for our Chabad friends and for the Rebbe and we would visit the Ohel three times a year on our trips to New York. So when a shidduch was suggested for me, a boy from Crown Heights, naturally, I said “no” right away! I didn’t even want to hear of it! The girl who suggested the shidduch was an acquaintance of mine who actually went to a kiruv seminary in Crown Heights and kept pushing me to meet him. Only after 8 months of persuading and another two suggestions of the same boy from two different people made me say, “ok, Hashem, this seems awkward. It seems like You really want me to meet this person. Let’s go. I’m ready for his parents to call mine.” The next day we got a call. Everything went so fast. My husband flew in to see me twice and we were engaged. Six weeks later we were married and settled in Crown Heights, New York, the place I never dreamed to end up in.
From day one, we used to fight about the Rebbe being Moshiach, not being Moshiach and how I desperately didn’t want to live in Crown Heights for more than two months. It was so bad that I remember not even wanting to hang a picture of the Rebbe in our home. Looking back, I can’t explain what it was, but there was such a negative notion in my mind about Chabad that I felt so uncomfortable being a part of this community. I clearly remember how I would never dare say that I’m from Crown Heights when attending Touro College. That’s how embarrassed I was.
A few years passed. I started to settle more into the community – especially Russian Nshei. I started to attend classes and the monthly farbrengens, and began to love Chabad Chassidus, the Rebbe, and everything that came along with it. Looking back, there was so much beauty in Chabad chassidus that I missed out on and was concentrating on totally the wrong things. As I said before, since the divorce of my parents, there was much sadness inside of me and although I considered myself a spiritual person, there was a void. I felt as though I was just doing the mitzvos or was davening by habit and pressure, without having the feelings involved.
It was here, in Crown Heights that I learned very important traits that would build the foundation of my future life.They were: serving Hashem with happiness, accepting people who are different than me and possessing a non-judgemental attitude to every human being. These notions came hand in hand with my social work studies and Hashem was preparing me for my second big challenge. Besides learning these amazing traits and living a more fulfilling life, Crown Heights is the place where my singing talent came out. It was here where my unofficial little performance at a bridal shower turned into a singing career I never dreamed of.
My biggest second “never” was when I had my 5th child, who was born with a rare genetic disorder, CHARGE SYNDROME. It’s a combination of hearing and visual impairment, severe developmental delay, heart and feeding problems and more Rafi is on continuous G-tube feedings and has full time nursing. For someone like me, who avoided hospitals, to have a very medically involved child is quite challenging.
I feel the biggest part of this journey was learning acceptance and having unconditional love. Rafi is a different child. He has his own ways of communicating with the world and smiles on his own terms, not ours. It was hard to imagine that here I would have a child that so many were uncomfortable being around. People stared at the tube pasted to his cheeks and wondered why his facial features were different ( he had a nasal tube the first 8 months). Raising a child with a disability or being a sibling to that is not an easy life, especially when you suddenly don’t have one of your parents for a few days due to an unexpected admission to the hospital. And this past year alone, there were 19 Hatzalah calls and 4 admissions!
As much as this was challenging, I thank Hashem for my beautiful gift of being chosen to be the mom of Rafi. It’s like being chosen to raise a Moshe Rabeinu! The Lubavitcher Rebbe always spoke highly of children with special needs and the greatness of their neshama, soul. No matter how difficult it is, I concentrate on the positive and see this beautiful baby Rafi as a blessing in disguise. I started calling him our guardian angel. Because of him, I was blessed with an entire social network in the comfort of our own home: all the therapists and nurses that became family throughout the years. Before Hashem gave the problem, He already gave the solution. He had me obtain a Masters degree in Social Work so I can learn better communication skills, possess a non-judgemental attitude, and just plain become an advocate for Rafi. It definitely came in handy in order to interact with such a big pool of therapists, teachers, organizations, insurance companies and the many specialists that we encounter and loads of paperwork that we deal with on a regular basis.
It is because of Rafi we became part of the most amazing organizations such as the Friendship Circle, where we feel like we all belong. In 2019, the Make a Wish Foundation granted Rafi his wish, which was to go on a family vacation. They flew our entire family of 9 to Orlando, Florida, including a nurse, for a week. This was our very first time that we went away as one family unit, and it will be something special that will last with us a lifetime.
Besides all the wonderful things that came along with the challenge, the biggest blessing for me is that I became the strongest and bravest woman I am today. Because of Rafi, I did and am constantly doing things that are totally against my nature. I became a nurse without a license. In addition, I became empowered and have grown so much from this experience.
I want to take this opportunity to thank Hashem for choosing our family to raise Rafi. I would also like to thank all our family and friends who were there for us throughout this journey. In addition, I want to shout out the most amazing organizations that are always there for us through thick and thin: Hatzalah, The Friendship Circle and Bikur Cholim of Crown Heights.
I am on a mission to empower specifically moms and make life just a bit easier for them. Thus, I co-founded a few projects: MaMi Meals-which is a meal train for the week, for Russian speaking families after they have a baby; “Take Me Home Kit”- a baby kit filled with all baby essentials to bring home baby from the hospital, including a blanket; A siddur ( prayer book) for each of these children, with their name engraved.
I want to thank you for taking the time to read my story. I am confident that you have a very unique story of your own. Go out there, embrace your fate, discover your strengths and talents, pray and take action to complete your purpose in this world. WIshing you success in all areas.
SIncerely,
Miriam Ilyayev