To Win the Lottery Twice
Rivka Finkel M.A., C.A.S.A.P.
Have you ever felt that something really good is about to happen? That sense of excitement and restlessness when you know that something is about to change your life forever? That’s how I felt when I came to the hospital to give birth to my tenth child bli ayin hora.
It was a special occasion and my husband and I were grateful that we had been zocheh to come to this point in our lives.
I was so relieved when the birth was over. It had been a long pregnancy and I was happy to tie up the whole experience with just wishing everyone ‘bruchim tiheyu’ and focus on the adorable baby boy that was lying peacefully in my arms.
I chose to ignore the midwives’ worried looks and the fact that my newborn baby was super calm and didn’t seem much like my other kids. I was too tired to analyze it all so I found myself believing the medical team that everything was ok and hoping that once I get a night’s sleep I will be calmer.
The following morning, my husband came over for a short visit. He was busy preparing for the ‘sholom zochor’ and since it was a short Friday he intended to stay just a few minutes. The doctor on duty noticed his arrival and came over to talk to us. Suddenly he lost his words and started getting all official. He asked if he can sit down or if we prefer to come over to his office. I couldn’t believe what was happening and before I knew it, I blurted out, “With all your introductions it looks like you’re about to inform us that our baby has Down syndrome!”
The doctor was shocked. He said, “I didn’t realize that you were already told.” He walked out and left us speechless.
Ten days later we met with the professor who was the head of the department. He was about to give us the results of the tests that were taken and to confirm our Yoni’s diagnosis. By then, I had read up on Down syndrome and although I was having a hard time coming to terms with it I was being strong for the sake of my family.
As our meeting came to an end, with the doctor trying to give us whatever encouragement he could, I turned around and asked him, “What are the chances that we would have another Down Syndrome child?”
With a wave of his hand he dismissed the question with a confident smile and a firm statement: “It’s the same chance as winning the lottery twice,” he said.
Eleven months later Meir was born. When the midwife couldn’t hide her tears, I told her that I already know that he has Down syndrome. She was surprised, so I told her about his pregnancy.
For months I kept going to doctors and doing all sorts of tests. Something had felt strange all along. The doctors assured me that everything was okay with my unborn baby and my worries were considered normal. Since I had just give birth to a child with special needs, it made sense that I would be anxious for it to happen again. They strongly recommended that I see a therapist to help me overcome my concerns. As a psychologist myself, I wasn’t convinced that therapy would change the physical symptoms I was experiencing.
The night Meir was born was a regular Motzeh Shabbos. I had been watching Yoni in the hospital as he continued to have seizures on a regular basis. The neurologists were having a hard time treating his infantile spasms. Suddenly I felt like I had better move over to the maternity ward. I kissed Yoni good night and asked the nurses to keep an eye on him until I’d get one of my teenagers to take over. When I was on my way in to the delivery room I begged the nurse to have a pediatrician available as soon as my baby is born because I just want to know immediately that everything is okay.
She told me not to worry and settled me into a comfortable room with a large window facing the beautiful scenery of East Yerushalayim.
Once the doctor confirmed my suspicion, I was relieved. There is nothing scarier than the unknown. Down syndrome was familiar to us already so it helped me and my family come to terms with the new situation much faster. The social worker asked us what we felt about the situation. My husband explained to her that individuals with Down syndrome have special souls and great Rabbis would respect them, and taking care of them is an honor for us. She was relieved and admitted that she was very overworked and appreciated that she did not have to find another placement for an abandoned baby…
The next morning I came down to visit Yoni in the children’s ward and to tell him about his new-born brother who shared syndromes with him. Yoni seemed happy, although, due to his blank expression, it remained an assumption. Only now, 6 years later does he express his love and excitement to his most cherished brother.
Meir was adorable. He had been in an incubator for a week and we could hardly wait for him to be discharged. With my hectic schedule, I had to be extra careful to take note of his meals since he never showed signs of wanting them.
He chose different health issues than Yoni and for the first 3 years they were both frequent visitors at the children’s ward for a variety of medical complications.
Often, I found them ‘blue’, only to realize that their oxygen levels had dropped so low and emergency medical intervention was needed. All my children and boarders were trained by the hospital staff to do a resuscitation if necessary and to check vital signs. On more than one occasion, the doctors told me that it’s a miracle that they are still alive.
Most of the time, as one would be dismissed the other would be admitted. The hospital became my second home. My family was amazing and everyone helped out in their special way. My students saved the situation on Shabbosim and night shifts. The hospital security staff became familiar with the mother of the ‘boys’ who came every night at 11pm, after a long day’s work. At the time, I was the administrator of an organization and it wasn’t the type of job I could put on hold.
Slowly, Yoni and Meir grew older and stronger. Yoni’s hearing returned, his seizures stopped and his friendliness made him famous. Meir recovered from his heart surgery and developed a good sense of humor which makes everyone around him love him. During the winter they still suffered from chronic pneumonia. By the age of 4 I could already put them to sleep without connecting them to the oxygen machines. I wasn’t checking their saturation that often anymore. And our family began settling into a routine.
As Yoni and Meir continue improving in their speech, their level of functioning keeps increasing. They have learned to do many basic jobs around the house including setting the table for Shabbos and arranging the shopping in its proper places.
Occasionally, my neighbor stops me and reminds me that she is davening for Yoni and Meir to get well and for their syndrome to disappear. I assure her that for me they are perfect and we love them just the way they are.
From Chanuka, my phone doesn’t stop ringing with girls calling to ask if they can volunteer with Yoni and Meir during summer vacation. מי כעמך ישראל! Whenever I thank our devoted volunteers they claim that they feel so grateful for the opportunity and sense of fulfillment that Y&M give them. At first it was hard to learn to accept help but now I find myself apologizing to all those wonderful people and their offers that we ‘only’ have two children with Down syndrome…
Yoni and Meir have taught me to enjoy the here and now. They have also taught me to adjust expectations and appreciate results accordingly.
If only we would do that with all our students and children, we would surely help them be so much more motivated and successful!