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|Simcha was a beautiful baby. And he was born with a hole in his heart.
Heartstrings recounts twelve incredible months in the life of one baby and his family. Written by the child's mother, it is a poignant, powerful, and ultimately uplifting story. Above all, it is a tale of Divine Providence in its many guises.
"Your manuscript...should serve as a challenge to all on the
responsibility we have of helping each other,
especially in times of need..."
Grand Rabbi Levi Y. Horowitz
The Bostoner Rebbe
'Heart' is truly the operative word in this heartfelt book, which is both heartrending and heartwarming."
"This is a very precious and very powerful book, an eye-opener and a heart-opener."
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by Ella Katz
The birth was routine.
The baby was beautiful.
The parents were elated.
Then the pediatrician said he
had something to tell them.
Heartstrings is the poignant, powerful, and ultimately uplifting story of Simcha, the baby who was born with a hole in his heart. By the laws of statistics he should not have survived his first few weeks. Instead, through the miracle of modern medicine and the tremendous benevolence of Hashem, he lived a whole year.
Little Simcha lived to see the full cycle of the Jewish calendar. And he lived to immeasurably enrich the lives of his family and of all those who came into contact with him during those twelve short months. The story of Simcha is like the brief but brilliant flare of a brightly burning candle that illuminates everything around it. Above all, it is a tale of Divine Providence in its many guises.
Through his mother's eyes, we meet the doctors, nurses, neighbors, and casual acquaintances who had their parts to play inthe drama. Whether flying halfway around the world so that her newborn could undergo open-heart surgery or watching him grow like any other baby in her Jerusalem home, Ella Katz was determined to live each moment to the fullest. In the midst of every ordeal, she had the presence of mind to grasp the many details of Divine and human goodness that filled her Simcha's life and imbue this account with such blinding beauty and inspiration as it will unquestionably fill your own.
First published 1996 Copyright © 1996 by Ella Katz
Published by; Targum Press, Inc.
200 Airport Executive Park Nanuet, NY 10954
Distributed in Israel by: Targum Press Ltd.
Dedicated in loving memory of my parents,
Mr. and Mrs. Joseph Stone
who left this world before Simcha zl joined our family.
you, too, shared in that special light that was the essence.
A teiere neshamah, sorely missed, but whose smile remains with us always.
Who is the man who desires life..
Dedicated in loving memory of
R. Moshe Aaron ben Eliezer
by Tsippa Meer and family.
and Dr. Bernard A.Burnham, a dedicated opthalmologist.
Reb Ephraim Fine ZL
His love for Torah was paramount. His prayers and dreams were of the World to Come.
A story is told of a man who, having lost a child, refused
to be comforted. One night he dreamed that for each child
lost at a young age the Almighty Himself lit a candle.
Only his son's candle was extinguished.
"Why^" he cried. "Is there no light for my son<-"
The answer was given that every day this light, too, was
kindled and extinguished by his very own tears, the
tears of a grieving father.
So Simcha, this book is dedicated to you, child of light, as
we wipe our tears and await the day when the Mashiach
will come and the Almighty will wipe the tears from every face.
May your light shine.
Acknowledgments - There are so many precious people to whom we owe a debt of gratitude that is clearly beyond our capacity to ever repay. Any attempt to do so can only fall pitifully short of the mark. Some of those special people expressly did not want to be mentioned you all know who you are. Even if your identities in the book are, albeit thinly, disguised, your personalities shine through.
There were those who stood by us as we floundered through hospitals, airports, and medical jargon and guided us through it all with grace, kindness, humor, and patience both the doctors in Jerusalem and on die other side of the ocean. May Hashem bless you all and continue to guide your hands and each step you take.
Our families, the Bostoner Rebbe, shlita, and family, the Boston Kollel family, friends, and neighbors friends became family, and family became friends. You can choose your friends but not your family. We consciously chose and continue to choose you all. And all of you feel like family even if we don't share the same grandmothers!
Special thanks to those of you who cheered me on and encouraged me through all the many and protracted stages of this manuscript. Only you know, Shifra, Shoshana, and Ruth, how many times I became so close to giving up. I might have done just that if your encouragement, always replete with practical help, hadn't been so generously and unstintingly lavished upon me.
Rebbetzin Samet's consistently sensitive guidance was invaluable being there both as we lived through the events that formulated this book and during the writing of it.
Many thanks to Miriam Adahan for her time taken to read the manuscript, and her suggestions and warm approbation. That, too, is a gift of precious magnitude.
Ruth Pepperman's skill at word processing is only exceeded by her generosity of spirit (at almost all hours of the day or night). She may not have convinced me that the computer and I could become friends but certainly made herself available more than graciously when the computer and I had trouble communicating!
Debbie Ismaeloff, with her skillful editing and sensitive manner, made if so much easier for me to entrust my "baby" to her care.
My sincerest thanks to the staff at Targum for always being so pleasant to deal with.
Finally, the most difficult to thank adequately and yet the most obvious my family. More correctly, to Hashem are directed our most profound thanks, as a family, for giving us one another my husband, Sholom, and children, Yossi, Shmuli, Miriam, Nochum, Chavi, and Ephraim and for briing us through the difficult times together. May we all merit to share the Simcha in our lives together in good health and to greet very soon Mashiach tzidkeinu, together with all of klal Yisrael.
It's not easy to write this when I don't know whoare; I'm sharing with you such an important and meaningful part of my life. I can at least tell you why I wrote this book so you'll understand me a little better.
Originally, I began writing for myself that makes me a reader, too. It was a cathartic release of sorts. As I continued to write, it became increasingly clear to me that even if no one else were to read this, I owed it to Simcha to write something of the story of his life. Our family alone learned so much, saw so much benevolence and hashgachah peratis, that the Almighty showered upon us during this time, and we didn't want it to be forgotten. Then, of course, was the kindness, the devotion, the dedication of family, community, and friends. We felt that if one of the reasons these events came about was to help us to appreciate one another more, then it wasn't just a whim and a cathartic release on my part to write about them. It was more of a duty and an obligation to share, which I was happy to fulfill.
During the course of these events, there were people I met, both inside and outside the hospital, dealing with their own crises. I found that many of these people either themselves believed, or had been led to believe by those around them, that they were now outcasts who didn't belong to normal society. I wrote this for them, too. Watching a child, or any loved one, suffer is painful enough; being hospitalized oneself has its own agony. Yet through my own experiences, I became convinced that this suffering does not have to be compounded by an added and unnecessary feeling of alienation. Maybe part of the reason we needed to go through all this was to learn how to reach out to others and mitigate that feeling of isolation that so often accompanies an illness or crisis.
How often do we hear people say (and sometimes those people could even be ourselves), "I can't call X. I know she's in the hospital, and there's a problem with her baby's/child's/own health, but I don't want to be in the way"? If, as a result of reading this book, just one person will make that much-needed call and tell X, "I don't want to be in the way. I don't even know what to say. But I wanted you to know I am thinking of you...," my efforts will have been more than adequately repaid.
And what of the woman who I heard gave birth to a baby with a single ventricle in his heart who lived for eight hours? I was about to write this woman a letter and let her know that I understood just a little of how she must be feeling, when I was told, "No, don't write to her. She doesn't want to hear anything
I didn't write. I didn't want to intrude. But as this book came together, the image of this woman all alone simply would not leave me. We had had so much support on all levels, and in all our pain, we had known that each soul that comes down to this world be it for an hour or a hundred years is inestimably precious. Had anyone told that woman what a zechus she had? Was there anyone to let her know that the only way to go to Olam HaBa is through this world? To be instrumental in bringing a pure, innocent soul to this world and enabling that soul to go to Gan Eden, however painful, carries a reward and a value that we cannot even begin to imagine.
I don't know to this day if anyone told her these things. I could understand that she didn't want to be lectured, yet I felt an obligation to write. Even if that lady were to never pick up this book, I wrote this for her, too, if she would ever want to share our journey with us. A little bit of me accompanied her on her path. 1 wanted her, wherever she is, to know that. Maybe my words would help; maybe they wouldn't. Possibly I'll never know, but I felt an obligation to try.
You, dear reader, could be one of so many people, and I'm sure that each of you is just that. You could be alone in a hospital at two o'clock in the morning. Maybe you can't sleep, and no matter how supportive your friends and family are, you feel alone. I wrote this so that, whether you're spending time in the hospital as a patient or taking care of a loved one, maybe you won't feel so alone, since you'll have a companion even after visiting hours are long over. I came to be that for you.
The life of our Simcha was short but special, indeed. In countless ways, he brought out the very best in so many people. In a sense, he wasn't just our baby; a part of him belonged to all of us. In our community and across the world, we prayed together for him, rejoiced together when he was doing well, and felt so much closer to one another. Chesed (acts of kindness) took on new proportions that we never knew existed before Simcha was born. We were overwhelmed by the level of bikur cholim (service and help for the ill) we witnessed, the dedication on the part of so many people who gave of themselves quietly and unassumingly. I wrote this to remember and to let others share a taste of the greatness of some of the people out there who give all they have, and more besides.
Nobody lives forever, and it seems the only thing that really makes an impression of a lasting kind is to fill the time allotted to us with the kind of spiritual meaning that remains even after
<![if !vml]> <![endif]> we have left this world for the World of Truth. Simcha's life may have been short, but it was so full of meaning and brought out the best in so many of us that, in all our grief, there is a taste of sweetness and goodness that remains long after he has left this world. His life forced us to glimpse a little more of what really counts. He really was a gift in countless ways. The kind of joy his life brought to us was, in fact, the kind of simchah that is eternal. I wanted you, the reader, to know about that, too. If reading about his life brings some light and happiness into your life, then writing about it adds meaning to mine.
It was a Thursday in Cheshvan (October), two weeks past my due date. I had been in labor most of the day. The contractions seemed heavy, bringing us back to the now-familiar dilemma of the past two weeks: is it too soon to go to the hospital? My unwritten rule was: leave just enough time to check in comfortably; the smaller the time margin, the better. Arriving too soon just left too many variables. Besides, the hospital staff would want to know where I had been the past two weeks. (I had been checking in with a midwife to be sure all was in order.) Let nature (i.e., Hashem) take its course.
Now it seemed like the time had finally arrived. The deciding factor seemed to be putting one more child to sleep, especially one who didn't think that any available food suited his palate. It was more than I could handle. So we were on our way. We decided to go to Angel's Bakery first and buy some cake either for the hospital or to take home for Shabbos. Then we were off. Labor was progressing slowly. For a sixth birth, it was quite incredible. Shortly after we arrived, Shira, a young woman I knew, walked into the labor ward. Before she was married, Shira and her family had rented the apartment below ours for the summer.
The oldest of seven, she and her sisters had helped with my kids, and her mother and I talked our way through the summer. I was closer in age to Shira's mother than to Shira, but somehow her being a mother and about to give birth to her second closed the age gap as we both plugged into the timelessness of the situation.
In a secluded corner were eight beds in a row with a curtain in front of them. Here was a place where the husbands could hide and get some sleep while they waited. Since it looked like we had a while to go, I encouraged my husband, Sholom, to rest while I listened to some music on my Walkman. Shira in the next room deserved that privacy.
It was two o'clock in the morning. Shira's doctor had just arrived, and things looked like they were moving. I took off my earphones to join Shira's simchah. She had a baby girl.
By now my labor was rapidly progressing, and I went down the hallway to the husbands' makeshift waiting room to tell Sholom. Would he like to escort me back to the delivery room? I started to giggle. "Come on, Sholom," I said. "Let's make a run for it. It's not too late; we can still escape."
The birth took longer than we'd expected and turned out to be the first in a chain of events, each more miraculous than the next. To begin with, the baby was in a slightly posterior position. Six months previously, I had gone with a friend to be with her at the birth of her son; her baby had also been posterior. Hashem had prepared me so I'd know what to expect for this part, at least.
The midwife, who had delivered my older daughter, Miriam, was ready to call the doctor to get the baby out with forceps. Baruch Hashem, our new little four-kilo, sixty-five-gram son made it out into the world without all of that.
It was neitz, that magical time of dawn, and, sobbing with relief and joy, I shook so hard I could hardly hold our precious little bundle. Sholom waited a while and then called home.
Upon hearing the news, the children happily prepared for the shalom zachor. "Let's get garinim (sunflower seeds), Tatty!" they shouted happily. "Mommy's not going to be home!" I hate the mess that snack engenders, so having me in the hospital broadened the children's horizons as to what could be served.
A little later, Sholom left, and I basked in the joy of a newborn, gazing at his fingers and somewhat squished face. He was perfect, oh, so perfect. Thank You, Hashem, thank You.
As people checked out for Shabbos, Shira and I were moved out of the massive, eight-bed room to a smaller room, where we would stay until Monday morning. Around lunchtime, I called home. A neighbor's daughter answered. "Everything's under control," she said. "Your husband went to a levayah." Sholom wouldn't make it back to the hospital erev Shabbos.
Later I found out that Reb Simcha Wasserman, z"tl, had been niftar (passed away) in America the day before. His levayah had already taken place in the States, and another was scheduled for Erev Shabbos (the eve of the Sabbath), in Yerushalayim (Jerusalem). Reb Wasserman spoke at our chasunah (wedding), and he was the sandik (one who holds the baby) at my second son Stimuli's bris (circumcision).
Later, my big boys, Yossi and Shmuli, showed up to say mazel tov, like two little men. "How was the birth, Mommy?" they asked. So dear, so sweet. My heart overflowed with joy as I seated Yossi, my eldest, on my bed next to the new baby. My biggest and my littlest! I thought happily.
On Friday night, Shira and I ate our Shabbos meal together. It was good to have company. Shabbos in the hospital has a strange feel to it. The meal started early and was quick and to the point. We walked back to our room in total exhaustion, happy to go to sleep early and get some rest. "Shira," I said as my eyes closed, "back home they probably haven't even made Kiddush yet. I miss them, but I'm so happy I don't have to do anything."
Sunday morning, Shira was to go home, and I would be on my way to the neighborhood of Telse-stone to spend a few days at the convalescent home for women after childbirth. Bright and early, Shira and I got to work arranging for our national insurance checks, given to the parents of each Israeli newborn, and temporary birth certificates for the babies. Afterward I went to the nursery to wait for the pediatrician to examine the baby.
When I arrived at the nursery, the nurse called me over and told me that the pediatrician had already checked our little one. "The doctor would like to talk to you." Hearing words that everyone dreads to hear, I reached the end of a certain part of my life and the beginning of a new chapter.
The doctor reassured me that it was probably nothing, but he had detected a heart murmur, which needed to be checked out. "My daughter has one, too. She's four years old and absolutely healthy," he said. "One in a hundred babies have this, and many times it's nothing."
I heard him, but I couldn't control my trembling. "Please,Doctor, I need to call my pediatrician," I said. "Would you talk to him and then let me speak to him?"
Reaching for the phone, I focused on dialing the number. It rang, and to my great relief Dr. Rayne was there. "Dr. Rayne, it's Ella Katz," I said. "I'm calling from Misgav LaDach Hospital. I get a mazel tov." The words tripped over one another. "We had a baby boy on Friday. We're about to check out of the hospital, and the doctor here found a heart murmur. He says it's most probably nothing, but I'm panicking. Please, could you talk to him and then tell me what he said?"
They spoke, and again I was told this time by Dr. Rayne that what was such a terrifying prospect to me was "probably nothing." "But I'll be in the office until twelve-thirty, and then I'll check the baby myself if you want," Dr. Rayne offered.
I rushed to the pay phone to call my husband. "Don't worry, I'm with you," he reassured me. "Whatever happens, we'll get through it together." Then I informed my cousin, who was a nurse at the hospital where I was staying and whom I had asked to drive me to Telsestone, that there was a change of plans. In a shocked, disbelieving whisper, I told her what had transpired. We needed to get to Dr. Rayne's office in Har Nof by twelve-thirty. I couldn't face going to Telsestone without knowing what, if anything, was wrong. I needed to allay my fears, to hear it was nothing, so life could go on.
We made it to Dr. Rayne's office just in time, having stopped at home on the way to pick up Sholom. "Yes," he said, "I hear the murmur. I'll bet it's nothing. You know, if this baby were a girl I'd tell you to go to the convalescent home and check out next week. But there is a possibility that your baby's condition might require medication, and if that's the case, it's a good idea to have it checked out by a pediatric cardiologist as soon as possible, so that the course of medication could be completed in time for the b
<![if !vml]> <![endif]> Dr. Rayne tried unsuccessfully to reach a pediatric cardiologist on the phone. "Well," he said with his convincing smile, "let's try the IBD method."
"And what might that be?" we asked.
"It's called, ich bin du " he replied. "You simply show up and say, 'I'm here.' In fact, I need to see someone in Shaare Zedek Hospital, and I don't have my car, so you can drive me there."
Echoes and Nightmares
A few minutes later, Sholom and I, together with Dr. Rayne and the baby, walked into Machon HaLev, the cardiology department on the fourth floor of Shaare Zedek Hospital. The imposing-sounding name turned out to be no less imposing than the department itself, which consisted of darkened rooms with the sounds of amplified heartbeats, closed doors with signs posted outside reading, "Stress Test," and numerous technicians rushing around. Walking down the corridors, I thought, What does all this have to do with us?
Dr. Rayne found Dr. Frazer, the pediatric cardiologist, spoke with him briefly, and then came back to us. He explained that Dr. Frazer could test our baby privately immediately or the next day if the visit was to be covered by our health insurance. After a little deliberation, we decided to do the testing right away. It didn't seem to make sense for me to go to Telsestone to rest in order to have to trek back the following day to Shaare Zedek. Besides, who needed to spend another twenty-four hours wondering and worrying? We needed to know it was nothing or be able to deal with it if it was something. And, boy, was it something
<![if !vml]> <![endif]> The doctors in Machon HaLev told me that the baby needed to be as relaxed and as quiet as possible for the echocardiogram, or "echo." This test is similar to an ultrasound, only it's the heart instead of the abdominal area that's checked. I asked for a place to nurse the baby before the procedure, in order to keep him calm. As I sat down I smelled coffee. "Excuse me," I said to one of the hospital attendants. "I just gave birth three days ago. In fact, I just checked out of Misgav LaDach. I'm sorry to bother you, but could I possibly have a cup of coffee?"
The attendant served me the coffee, and I drank it gratefully. This was my first taste of feeling something of a special case. Normally I would never have asked for a special favor. It's more difficult for me to ask for help than to do it myself. That coffee was probably Elite, but metaphorically it was something of a Taster's Choice, the first taste of a journey on a path that was not our choice but Hashem's (Gods). But we truly did our best to make His choice ours.
Finally, we stepped into the echocardiogram room, where Dr. Frazer was standing next to a sophisticated-looking apparatus. Our sweet little baby was put on the table and stripped to the waist, and gel was applied to his skin. The stethoscope-like instrument moved into the appropriate position, and images that were totally unintelligible to us appeared on a small screen. There were swishing sounds, some splashes of color on the screen, and the doctors spoke, both literally and figuratively, above our heads.
My husband and I stood on opposite sides of the table. We could make out some of what they were saying, and we understood enough to know that the problem was far from simple. Suddenly, the whole scene took on the quality of a nightmare. I looked to my husband for support, and as he met my gaze, his tears, like mine, seemed to be falling somewhere on our precious new son.
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