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Sunday, April 29, 2012

Sunglasses Day

Sunglasses Day

As told to Debbie Shapiro

This was published in Binah, April 24, 2012.

Yocheved was speaking rapidly, intently. Her husband Zev was looking directly at her, nodding at her words. It was obvious that he was reliving the experience.  And as they so eloquently expressed their pain upon losing their newborn, I felt the tears well in my eyes, for I, too, had undergone a similar experience. Losing a child is something one never forgets — ever.

A few weeks prior to meeting Yocheved and Zev Kaufman, I opened my inbox to find an email from a young couple living in a small out-of-town community. "Would you be interested in writing our story?" the email began.  "Our son was born at the beginning of October and was niftar a week later, on the day after Yom Kippur. We were aware that he would be born with serious health issues and had prepared ourselves both emotionally and spiritually to accept that he may not make it. But although we are both coping, at times it is still quite difficult. We would like you to write about what we went though, so that our story will help others going through a similar nisayon."

From our subsequent exchange of emails, I imagined the Kaufmans to be both sensitive and vivacious, and I was not wrong. As I sat at my kitchen table, drinking coffee and listening to their story, I was awed at their capacity to develop such a deep love for a baby they barely knew, as well as their ability to overcome their pain to openly express that love.



It was almost as if my sister had a premonition that something was not right. That morning, when I mentioned to her that I had an appointment with my obstetrician, she asked me if my husband would be accompanying me. I thought it was a strange question. This was my sixth pregnancy. I knew the ropes. I certainly didn't need emotional support.

The doctor’s checkup seemed to take longer than usual, and when she completed the exam, she uncomfortably cleared her throat and told me that the baby had serious medical issues. I'm usually a very stoic person, but when the doctor said, "Your baby is probably not compatible with life,” I burst into tears. And then I called my husband.


At first, all I could hear was crying. Then, between her sobs, Yocheved somehow managed to tell me that something was wrong with our baby.  I was in a state of shock. I remember driving to the clinic on automatic, feeling that I was in some type of reality warp.


 The technician brought me to what's called the “Quiet Room” – a small room to the side, with a sofa and a prominently displayed box of tissues. I was numb. Things like this aren't supposed to happen to young couples like us! We’d had our ups and downs like everyone else, but never a challenge of this magnitude. We left the doctor's office in a daze. Although in reality nothing had changed, we were now aware that there was an ominous gray cloud on the horizon, and we were petrified.

Over the next weeks, I underwent many different tests. They all verified that our baby's kidneys were not functioning. The prognosis was unanimous: without kidneys to rid its blood of toxic waste, our baby would die shortly after birth.

My husband and I chose not to tell anyone, including our families and closest friends. At night, when the house was quiet, we would stay up half the night, sharing our worries. We supported each other as our initial shock changed to grief, and finally, to acceptance.  We discussed every aspect of the challenge – from how and when to break the news to the children, to whether I'd light an additional Shabbos candle for this baby's neshamah. There were halachic questions as well, which we discussed with our rabbanim.

I put on a good show, pretending to be a radiant young mother looking forward to welcoming a new addition to the family. Each morning before leaving the house to drive the children to school, I would carefully comb my sheitel and spend a few minutes making sure that my clothes were just right. To everyone else, I appeared to have not a care in the world. No one could have guessed what was going on inside. But alone in the car, I would suddenly burst into tears. To conceal my red rimmed eyes, I started wearing sunglasses, even on dark, stormy days. I'm sure that people thought I was a bit strange!

Eventually, I decided to confide in a friend, Miri, who had gone through a similar nisayon. She was amazingly supportive. After that, a day didn't go by without Miri getting in touch with me. Her friendship and support gave me tremendous chizuk — just knowing that she was always there for me made a huge difference in my life.

Miri: You looked really good today. Hope you had a good day
Yocheved: Glad to hear. But I feel absolutely awful and had a terrible day. I can't stop crying. Don't even know why.

Miri: So why don't you call me? If you want to come over tonight, I'm more than happy to spend time with you.
Yocheved: What's a good time?
Miri: Whenever you want. You're always welcome.

 Yocheved: Went to the chiropractor this morning, and as I was lying there in agony, she said, "At least the prize at the end is all worth it.”
Miri: That must have been horrible. And you probably smiled through it.
Yocheved: Of course.

Later on in the pregnancy, a new series of tests showed that the baby had minimal kidney function, which gave us hope for his survival. "But," the doctors warned us, "if the baby does survive, he will need multiple surgeries and hours of intense therapy to be able to function properly."

Our heads were spinning. All of a sudden, the ominous cloud in the horizon had changed form. We had come to terms with the idea of returning home with empty hands. Now we had to accept the possibility that I'd be bringing home a very sick baby and that the pattern of our lives would change forever. Although it was a ray of hope – our baby might live and we were ecstatic – we had prepared ourselves for one reality, and now that it had changed, we had to adjust our way of thinking.

 I was due to give birth on Erev Sukkos. To ensure that the pediatric medical staff would be available for my birth, I was scheduled to deliver right after Rosh Hashanah. During the month of Elul, I prepared dozens of precooked meals and stocked up on staples. I felt as if I was preparing for a war.

Yocheved: Eighteen chicken rolls, ten kokosh cakes, seven containers of letcho, three containers of mushroom sauce, two trays of corned beef, and two ice cream bases. I'm falling off my feet now. Now I just have to clean up the mess, make the lunches, and I'm off to sleep. No more room in the freezer!
Miri: You're incredible. Tomorrow, you can come and cook for me!

Miri: I saw you today. Are you okay? Should I ignore the sunglasses?

Yocheved: I can be fine one minute and in tears the next, so I try not to go anywhere without them.
Miri: That is all part of being “normal”.

Yocheved: Baruch Hashem I had a good Shabbos. Four weeks to go...
Miri: Happy to hear that Shabbos was good. You will be okay,
iy"H. I am keeping tabs on countdown and am sure that despite everything you will have nachas from him iy"H.

Yocheved: This baby is on my mind every second of every minute. Can't stop thinking about it; I guess ’cuz it's getting closer.

Rosh Hashanah was an amazing experience. Every act and every tefillah took on a new intensity. As I lit the Yom Tov candles, I wondered where I'd be the following week. Life death — it was all intertwined, all so vivid. "Mi yichyeh, mi yamus — Who will live, who will die." The words were so real. As the cloud drew closer, I knew that whatever happened, I would be able to cope. Hashem is the Judge and His judgment is perfect.

Miri: Most mothers become mothers when they give birth. But you've done so much for him already...And really, call me on my cell tomorrow night if you need to. I'll be there for you.
Yocheved: As much as I am terrified, a small part of me is excited to finally see this baby.

The night before I was due to give birth, we sat down our two eldest children and told them that I was going to have the baby tomorrow, but it is likely the baby will be very sick and may not even survive. It was heart wrenching to watch their bitter disappointment, but we did our best to explain that although we cannot understand everything, we know Hashem does everything for the best.

During the birth, my husband spoke for both of us when he said, “I feel like we’re in a courtroom and the sentence is about to be handed down.” After the baby was born, when the team of six neonatal specialists entered the room, I burst into tears. With their presence, I couldn't delude myself into imagining that everything was normal.

The baby – my sweet little child — cried heartily at birth. He appeared to be so incredibly perfect; so alert. I was sure that the doctors had made a mistake or that it had all been nothing more than a bad dream. The doctor handed him to me and for a few precious seconds, I cuddled my newborn. And then they whisked him away.  


I went upstairs to the neonatal unit with the baby, while a friend stayed with my wife. After a battery of tests, the doctors confirmed that there probably was little or no kidney function. Without functioning kidneys, the wastes would slowly poison his body. The doctors predicted that he would die within a few days.   


 Zev returned from the neonatal unit and gently told me that it didn’t look like we'd be taking our baby home. It was like a stab in the heart. I so much wanted to take my baby home.

Because we knew that our time was so limited, we wanted to bond with our son as much as possible; to convey our intense love to this precious neshamah that we had been granted for such a short time. I spent the next few days cuddling my beautiful son. His tiny hand would grasp my finger while he gazed intensely into my eyes with the otherworldly gaze of a newborn. It was a very powerful time for all of us. Medically, there was nothing we could do for him. He was totally in Hashem's hands, and that, too, was comforting.

Yocheved: I emailed you a picture of the baby.

Miri: I think you are so smart to enjoy every moment with your baby. Looking back, you will know that you made the most of it. And really, all the people we care about aren't here forever. We have to appreciate whatever time we have. He really is beautiful. Amidst the hardship, there is what to enjoy. I am in awe of you.

As per our Rav's instructions, we named our baby Refoel. Now he had an identity, and a name that we and others could daven for.

Our parents and siblings looked after our other children. They shuttled back and forth from the hospital all week to bring us clothing and food or just to be there with us at our baby’s bedside at this trying time. We decided to let our two eldest children come and see the baby. They each got a turn to hold and kiss him. I think it was very therapeutic for them.

My husband did not leave me the entire week. Then, after five days, on Erev Yom Kippur, he left the hospital to get organized for Yom Tov. While he was gone, the doctor informed me that according to that morning's blood test, Refoel had only a few more hours to live.  I immediately phoned my husband. He rushed back to the hospital. Together with our baby, we were transferred to a “quiet room,” which had everything we might need to feel comfortable during this very difficult, yet, incredible as this might sound, spiritual time.

Miri: Do you want to talk? I'm thinking of you, davening for you. I feel as though I am in the room with you.
Yocheved: I feel that Hashem is with us.
Miri: Hashem is definitely with you. You will feel Him like never before. The baby must be so peaceful and beautiful. Treasure the moments with your precious boy. We are
davening for you to have the strength to get through this Yom Tov. Give the baby a kiss.
Yocheved: Thanks for everything, Miri. Fast well.

The nurses – the entire staff, actually — were amazing; so kind and compassionate. And despite the doctor's prognosis, the baby survived the day.

A few hours before Yom Kippur, our parents came in to the hospital to visit. My father and father-in-law both bentched us and the baby. There was not a dry eye in the room.

The nurses managed to find two candles for me to light. Late that afternoon, as I lit the candles to usher in Shabbos and Yom Kippur, I couldn't help but wonder which would survive longer — my baby or the candles? But the baby survived for another two days. Yom Kippur was on Shabbos; he was niftar on Sunday night.

My husband's shul hosted a shalom zachor for the baby. Our eldest son prepared little containers of sweet smelling spices, which were passed around in lieu of food. My precious Refoel kept one Shabbos and fasted one Yom Kippur (he received nourishment intravenously) before departing from this world.

I cuddled my baby from Friday morning until Motzoei Yom Kippur. My husband remained with me over Yom Kippur, davening the Yom Kippur tefillos in our private room. When he finished Kol Nidrei, he stood in his tallis and recited the brachah of Shehecheyanu, thanking He Who has sustained us to this day.

Between the tefillos, my husband sang to the baby. We spoke to him and asked him to daven for people in need of yeshuos when he returns to the World of Truth. The day was long, but we were just happy to spend every extra hour we could with our baby. We watched the sun set, and as we davened Neilah, the words “pesach lanu shaar — open a gate for us," took on a new meaning. The atmosphere was surreal. Motzoei Yom Kippur came and Refoel was still hanging on to life.

Yocheved: Still holding him. He's hanging in there. I haven't slept. Not sure how long this will go on for.
Miri: You are doing everything that you possibly can for this baby. It's really incredible. Hashem will give you the strength you need, and you will be rewarded for all the pain you are going through. Do you have food?

Yocheved: Yes.
Miri: Good. Take care of yourself.

Yocheved: Did you say you were making mashed potatoes?
Miri: Yes. Do you want some? I would be honored.

On Motzoei Yom Kippur, a few men from our community came to take turns holding the baby. For the first time in over 36 hours, my husband and I were able to lie down. Everyone was incredibly supportive. People I barely knew were texting me words of chizuk and sending us whatever we could possibly need. The hospital staff could not help but notice and it was a tremendous kiddush Hashem.

Yocheved: We bathed the baby and dressed him. The nurses removed the oxygen, which makes it easier to cuddle him. Now he is sleeping in my arms.
Miri: That sounds so peaceful... What do the doctors predict?
Yocheved: They can't predict. I guess we just have to wait and enjoy every minute, and when his time is up, it's up.

Yocheved: I am getting more attached to the baby every minute, and I am so scared of letting go.

In the end, our baby died peacefully in my arms. He just stopped breathing and after a few long minutes, it became obvious that he was gone.  There was no panic, no gasping theatrics, just a realization that he was no longer with us. We didn't tell the hospital staff; we didn't want them to touch the meis. Instead, we called the chevrah kaddisha. The man from the chevrah kaddisha was crying as he took the baby from my arms and placed him on the sofa. Then he called one of the doctors on duty to issue the death certificate. The doctor was very young and inexperienced and this was obviously the first time that he had been asked to verify a death. He was shaking, and we tried our best to calm him.

And then it was over. We packed up our belongings and returned home.

Yocheved: It's over. We are on our way home and I want to sleep for a few days.

It was one o'clock in the morning. The streets were dark and empty. My arms were empty, and I felt the emptiness with a painful intensity.  Yet I was at peace with what had happened. I knew that there was a reason that this neshamah had come down to this world, and we felt that it was a zechus to have given Refoel this opportunity.

But still, the pain was a wrenching, almost physical.

Yocheved: Cried myself to sleep last night. And this weather is so depressing...My cleaning lady can't stop crying. She came in today, all excited, with a beautiful baby present. I probably should have let her know.
Miri: What a pain to have to deal with this on top of everything else. Think of Malky. She's super excited to be home with you. And the sun is shining.
Yocheved: I'm having problems sleeping. I'm so tired, but my mind is racing.

Miri: Have not heard from you today. Are you okay?
Yocheved: I'm okay. It's much harder now that everyone is going on with their normal lives, and I feel this emptiness. I think I was numb for the first week, but now the pain is even stronger. I used half a box of tissues last night while I looked at his photo album and my eyes are all puffy today. Definitely a sunglasses day...

After the baby died, my husband asked me, “If you could, would you just erase the last few months of your life?” My answer was clear: “Definitely not.” As challenging as the experience was, we also grew tremendously from the ordeal.

The entire experience was all so surreal: a little neshamah coming down to the world for one week, meriting to keep a Shabbos and fast a Yom Kippur, and then to have his bris and be buried on the eighth day. I have no doubt that Refoel, z"l, accomplished whatever he was sent here to do.

I am happy to be contacted by others going through similar experiences. You are welcome to email yomkippurbaby@gmail.com.

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