Escaping War-Torn Ukraine With Our Child With Down Syndrome
Sarah Sander asked me to write a few words. I could not refuse her. Life is so hectic and unsettled at the moment and to concentrate on putting thoughts on paper is a challenge. Four years ago, on the 26th of Sivan, our daughter, our sweetheart, Chaya Rivkah was born with Down syndrome. No coincidence that it is in this month that Sarah asked me to submit an article. I was encouraged to reach out to Sarah after Chaya Rivkah was born. Sarah was that anchor, the oxygen and the proof that life will continue, and may I dare say become richer than before. Sarah insists I call her by first name only since we maintain a solid friendship. The warmth I received from her is motherly like. She is my mentor and an example of a true Yiddishe proud mama and leader. (Editor’s Note: Awwww…blush, blush – Thank you, Sara!)
Motzei Shavuos 5782 –
Boruch Hashem, we had the zechus of being sent by the Stolin Karliner Rebbe Shlita as shluchim to serve the Jewish community of Lviv (Lemberg). We are grateful for this privilege and for the many blessings that came along with it.
My husband and I are now in Lviv, Ukraine, the place we call home for the past 29 years. It is quiet now with no air raid sirens at the moment. The children stayed in Eretz Yisroel with siblings. In the stillness of night, I reflect and write.
War?! No one in our community believed the war would actually break out and if it did, that it would be so aggressive, so barbaric and so damaging. Over three and a half months of war, frequent air raids and disastrous rockets, one learns to treasure the important things in life – precious relationships, smiles and hugs. I’ll never forget waking up in the wee hours of the morning to the air raid that signaled “the war began”. The next few days brought many refugees to Lviv from all over Ukraine. Lviv is close to the Polish border and the furthest west was naturally the place to run. Panic and uncertainty were all over the place. We were thrown into a frenzy, feeding the hungry masses and spreading out mattresses in the shul. Then came the outpouring of horror stories and the crying that came with it. People escaping for their lives traveled for 30-48 hours via trains, with standing room only, holding their knapsacks tightly with whatever they were able to grab before leaving their homes. Some arrived, if lucky, with just a passport in one pocket and their telephone in the other pocket. Many held tightly onto the title of ownership of their apartment or business, so that one day in the future their descendants would be able to come back to claim the properties. Those that did have the frame of mind to grab a suitcase of belongings had it flung straight off the train by those clamoring to get onto the overpacked convoys. Most of the escapees stayed for a few hours, ate, slept and then traveled onward to the Ukrainian-Polish border. At the border, they waited for three days or more in the freezing cold with no food and no toilets. There was gridlock at the border, dozens of kilometers long. Many were traveling with their own cars and when the gasoline was exhausted they just left their cars in the middle of the road and trekked 14 kilometers to the border with babies and elderly, only to have to wait in line for another few days.
Within a day or two of the start of the war store’s shelves were empty, pharmacies were out of medicines, one needed to walk around with ID at all times and curfew was imposed at night. There were long lines at the gas stations and then when it finally came your turn, the gas tanks were empty.
In the midst of our life-saving activities, word came from the Stoliner Rebbe shilta that we must leave immediately with our children. It was one of the most difficult moves in our lives, to actually pick ourselves up and leave Lviv knowing we were leaving people behind who could not or would not leave. We were terrified how we would travel with Chaya Rivkah, three years old with Down syndrome, in the freezing cold. Having been hospitalized in the past numerous times with pneumonia, we could not risk keeping her in the cold for one minute, let alone a few days. Boruch Hashem, Rabbi Moshe Weiss, a big askan and founder of L’Tzion Brina Institute was asked by the Stoliner Rebbe Shlita to use his connections to get us out via the Ukrainian – Hungarian border, bypassing the long lines. This way Chaya Rivkah would not be subjected to the cold. The trip was treacherous traveling over the Carpathian Mountains, being stopped at check points every few kilometers. Each check point was manned by self-appointed security. They checked our bags and took away our passports. We breathed a sigh of relief as each passport was returned. This went on for hours and hours. A trip to the border that was to take three to four hours took a whole day. Although we were instructed to leave Lviv in the middle of the night we physically could not, as so many people, refugees and local Jews, were depending on us for food and other assistance. We hurried as much as possible, with my teenage daughters taking charge. We only left the next day. On top of it all, it started to snow. Because of all these circumstances, by the time we reached the border it was late at night and the diplomats waiting for us all day went to rest up to regain their strength. We tried to find a hotel, motel or any shelter but all lodgings were jam packed and overbooked. We slept that night in the van parked in a gas station, squashed and cuddling each other. As soon as it became light we were ‘hosted’ by the station’s staff to use the restroom. It was so cute hearing the cleaning women speaking Hungarian between themselves (the mother-tongue of many of our parents) although we were still officially in Ukraine. To make a long story short, our adventure took us through Budapest where we were served a delicious supper and put into a hotel with the most comfortable beds in the world. All of this was sponsored by Rabbi Mandel of Toronto, Director of CFWEJCIS – JEP – Shema Yisroel school network, who originally introduced me to Sarah Sander (Ed. Note: Rabbi Mandel is my cousin). With no tickets available in Budapest, we finally made it to Eretz Yisroel flying via Vienna. Our trip took three days but with chessed Hashem we had, relatively, five-star accommodations compared to those stuck at the border for days or those hiding in basements as their homes were being bombed. Now looking back, the only one with a smile, giggle and happy-go-lucky attitude was Chaya Rivkah. She was oblivious to the stress around her. Our other children – not labeled ‘special’ – reacted by displaying anxiety, vomiting and looking ill. All Chaya Rivkah yearns for is reciprocation with kisses and hugs. Chaya Rivkah’s friendly disposition was noticed by the diplomats, land border control officers and at the airport. Having Chaya Rivkah with us got us VIP service all along.
One mother of a child with severe special needs once mentioned, “I know people won’t like what I’m about to say but believe me when I say it. Down syndrome is the Rolls Royce of children with special needs”.
Talking about special children reminds me of a family joke we have. Whenever we are discussing shidduchim in the family and someone mentions that the prospective boy or girl is very special, the automatic response is, “Very special? Special like Chaya Rivkah?” and we all burst out laughing. It’s healthy to laugh and healthy to be so open about accepting and understanding Chaya Rivkah in all her beauty.
Our daughter was a kallah about to get married, when all this drama unfolded. The plan was to have the wedding in Eretz Yisroel after Purim. In our hurry to leave Lviv we could not pick up her Sheva Brochos outfits that were at the seamstress for repair. Her sheitel was left behind by mistake, as well as other things prepared for the wedding. Boruch Hashem, in Eretz Yisroel our sons, nieces and nephews and the Stoliner oilam rallied behind us by schleping beds and tables, and offering clothing, suppers and Shabbosim.
Before the war we were so worried how we will manage making Purim in Lviv, leaving right after for the chasunah in Eretz Yisroel and then rushing back to make Pesach in Lviv. We planned and agonized over every detail. Little did we know Hashem had big plans in the making totally unrelated to our petty worries. So many of the wedding details became irrelevant as my daughter, the kallah, and I were on the phone with Ukraine 24/7 from the second we arrived in Eretz Yisroel. People needed help with evacuation, medicine and food. The Jewish world united together in getting over medications, food and other supplies such as generators, flashlights, mattresses etc… You name it and it was sent to Lviv by major organizations, smaller organizations and private individuals. You all know who you are and may Hashem bless you many times over. Mi K’amcha Yisroel. Even on the day of the wedding we were busy with arranging shipments across the border and dealing with people’s personal problems. With a choked voice I asked those who we helped on the day of the wedding to daven for the chosson and kallah’s life together. A big shout out to our family and friends who helped the kallah get everything for herself and for her apartment.
We used humor to get us through any rough moments. We soothed ourselves by telling each other, “Well, what do you expect from a refugee family?”
The kids were placed in local chadorim. My nephew saved the day when he organized for Chaya Rivkah to be put into a gan for children with special needs. It was a big adjustment for her. The teachers were trying to communicate using all the languages they thought she might know, all at once, i.e. Yiddish, English, Russian and Hebrew. By now it looks like she enjoys attending the program.
Earlier this year Chaya Rivkah went through a second heart surgery in the United States. The women on a chat for children with Down syndrome (Lucky Moms chat) all said tehillim, which gave me a lot of strength and helped Chaya Rivkah. During that hospital stay I met a courageous Jewish woman who was there with her very sick baby. Rachmono litzlan the baby was niftar just hours after I met the mother. Understandably, I was so shaken. I spoke with one of the nurses, asking her if the hospital has psychological support for the medical staff to deal with tragedy. She answered ‘yes’ and walked out. Within a few seconds she walked back in and emotionally shared, “I want to tell you something. I’m working in this hospital for eleven years now and I have not seen a community like yours. I tell you, no other community has such a support group of love and care like yours. If a Jewish patient is in the hospital they get food, visitors, gifts, babysitters and more. And I see that because of the strong support you have for one another your people are able to deal with the trials G-d sends you in a more wholesome way.” I thanked the nurse for highlighting this. What a kiddush Hashem and how true. At that time, I didn’t know how much we and our community in Lviv would be beneficiaries of this outpouring of unconditional chessed.
For Pesach we made our way back to Lviv with some of our older children. Over Pesach, Lviv was hit with yet another direct rocket. We heard the rocket whiz over our building and then boom! The impact of the rocket which fell nearby shook our windows, and I felt the furniture move.
My eighteen-year-old daughter said, “Mommy this is the first time in my life that I felt it so clearly, that absolutely nothing is up to me; it is Hashem who is one hundred percent in charge.” I think I had that feeling once before, during Chaya Rivkah’s heart surgeries.
The war has brought out the best in many people around the world. Achdus, chessed and even patriotism to Yiddishkeit became priorities to many that were brought up diehard communists. My husband poses the question: What type of people will we be a day after the war? Will we become like the aggressors, defending our property and rights, or will we remain builders by being compassionate, understanding of each other, and forgiving?
May we be zoche to greet Moshiach speedily in our days.