Through a Mother’s Eyes 

Published in SPIRIT Magazine  

 

L'iluy nishmas Chana Mindel bas Harav Eliyahu Yehoshua 

L'iluy nishmas Reuvein Zev ben Harav Chanoch Henoch  

When Spirit Magazine decided to feature a family with more than one disabled child; they asked me to interview Mindel Teitelbaum of Monsey, NY. Nothing could have prepared me for the incredible story recounted to me during this meeting. Her story is far from light, her life far from simple but she has so much to share. Her honest disclosures about her personal experience may provide us with new insight and perspective on suffering. Few families have endured such heart wrenching trials and tribulations, and triumphed conquering despair and grief. Their story is one of superior strength and endurance, bitachon and resilience, stoicism and perseverance but above all – pure emuna. Although we ask Hashem not to test us, each person encounters difficulties and hardships. Mindel’s tests are unique – unlike yours or mine. But her outstanding courage and super-human fortitude are a tremendous inspiration.

Her story begins in 1983, Mindel Teitelbaum had two lovely, healthy children. Her life was filled with the ordinary, mundane, petty details of a young mother. Full of optimism about the future, she had no reason to believe that her life wouldn’t continue to coast along on the predictable course she envisioned.

Suddenly, her serene and comfortable world was altered when Reuven Ber was born. Her pregnancy had been a normal and uneventful one. Her third child appeared to be a healthy boy, weighing 8lbs, 5oz. by the second day, however, he had already lost nearly one full pound. Once Mindel brought him home, he had a very poor appetite and cried incessantly.

Interestingly, during the bris, everyone was shocked that the baby did not cry at all.

When the baby was two weeks old, Mindel’s parents arrived for a visit. They were visibly distressed and urged Mindel to “see a doctor right away!”. They rushed to the emergency room where they verified that the baby had lost two full pounds. The doctor referred to him as a “floppy baby” and suspected neuromuscular impairment, but could not conclusively diagnose him. He was transferred to a different hospital where a multitude of tests were performed; ultrasounds, CAT scan, etc…. There was no indication of brain damage.

At four weeks, the baby had a serious crisis. The doctors felt that the end was near. Mindel recollects, “I still remember that Friday afternoon vividly. I wanted to remain at the hospital with the baby for Shabbos, but my parents and my husband coerced me to return to my other children.”

Boruch Hashem, the baby survived. The baby threw up each time he was fed orally in the ICU. The doctors inserted a central line to help him gain weight and provide him with essential nutrients. After seven weeks he developed an infection with the line and it was removed. Consequently, Mindel decided to attempt oral feedings. She recalls, “I still remember the day when he swallowed 15cc’s of milk. Can you imagine? 15cc’s, do you know how little that is – it’s like half and ounce! But to us, it was really something!”. And it was, because after that the doctors informed Mindel that if she would continue to feed him orally, they would endeavour to send him home.

A Joyous Homecoming – A Difficult Lapse

With great joy, Reuven came home at the age of eight weeks. The other children, Rochel Leah, age five and Lipa, age three were jubilant to have the family united. They thought the house would return to its old, familiar routine, and they would be able to enjoy their new baby brother at last. Unfortunately their dreams were short lived. One week later, Reuven Ber aspirated (misdirected his swallow) and had to return to the hospital.

At this point no diagnosis had been confirmed. One geneticist suspected dysautonomia, but the continuous tests produced inconclusive results. They were groping in the dark. I asked Mindel what kinds of emotions she experienced at that time and she responded:

“I still remember the intensive frustration and disappointment that I was feeling then. Not because we had to go back to the hospital – in those days I ran to the hospital as much as I had to. My main concern was keeping Reuvi alive and well. It was mid-august when this episode occurred and the doctor explained to me that they had to monitor Reuvi for a couple of weeks. Yet he reassured me that I would have him home in time for Rosh Hashanah. I went out and bought a beautiful Yom Tov outfit for him in anticipation and I kept it with me at the hospital. Imagine my pain when he then developed pneumonia and had to remain another two months in the hospital with a new central line.”

Mindel’s days were spent with Reuvi in the hospital. In the evenings she returned home to be with her other children. She wanted to spend time with her other children as well – to feed them, bathe them, read to them, and be the one to put them to sleep at night. She always endeavored to preserve as much normalcy in her home as possible.

Finally - a Diagnosis

The medical team decided not to continue with IV feedings. Instead they contemplated on inserting a stomach tube, commonly called a G-Tube. While they inserted the tube, they performed a muscle biopsy. As a result of the biopsy, his mysterious illness was finally diagnosed. Reuvi was four months old when Mindel was informed that the disease had a name: Nemaline Myopathy. The doctor was relieved somewhat because nemaline myopathy is not a progressive disease; Reuvi was expected to remain, at worst, status quo.

The doctor predicted that the first two years would be extremely difficult. Yet, they allowed Mindel to take the baby home. She became a pro at feeding him and taking care of him. Mindel went to many places with him in tow, just like any other baby. She even went back to teaching part-time. “Everyone pushed me to do it ‘for myself’ to ‘get back to normal’”, she explained.

Little did she know that life would never be the same again.

Getting “Back to Normal” Doesn’t Last Long

Mindel never considered her personal needs. She went out of her way to make all her children feel special – she showered them with gifts, spent quality time taking them on walks and outings, to parks or the pizza shop whenever possible. She did not want her children to suffer needlessly. She sewed them all Purim costumes, took them on many special trips and always worked hard to make her family function as “normally” as possible. As her challenges increased, so did her desire to do her best and give each of her children her all.

Well, her “getting back to normal” only lasted a month, because Reuvi ended up with bronchitis and they were back in the hospital once again. With nemaline myopathy the lungs are very fragile. Reuvi used all the strength he had to breathe. When he was weak, he could not breathe properly. She remembers one night distinctively:

“Reuvi rarely cried, yet this one night he cried and cried. The hour was very late and my husband was not home. The doctor told me to calm down and come to the office in the morning. I dozed off for maybe half an hour – When I woke up, I took one look at Reuvi and saw that he was blue! Hatzolah rushed Reuvi straight to the emergency room. My husband, who had arrived home, stayed with the other children. Boruch Hashem we made it to the hospital.. The situation looked very bleak! By the afternoon there was a slight improvement. I took this opportunity to go home to check up on the other children. Upon my return, I was relieved to see Dr N. this was surprising, since, at the tome of admission, Dr N. was out of town.”

In answer to Mindel’s query, “what are you doing here?” he responded; “Mrs Teitelbaum, I had a dream that Reuvi wasn’t doing too well so I came back to check on him!” Actually, he was gravely ill. The next night, Mindel had gone home to sleep and was woken by a phone call in the middle of the night. “Mrs Teitelbaum, you had better get down here. It looks like Reuvi is dying!” Rabbi and Mrs Teitelbaum quickly called family members to stay with the other children and rushed off to the hospital. By the time they arrived, he was in critical condition. His breathing was heavily impaired. The doctors had tried three different respirators, and nothing seemed to be working.

Dr. N showed the Teitelbaums the x-rays he had taken of Reuvi’s lungs. They indicated that the lung was completely closed and the other lung was only a quarter of the way open.

From Despair to Nissim

Mrs Teitelbaum had a piece of basamim from the Alter Skelener Rebbe that he mother had given her. She had brought it with her to the hospital and instructed Dr. N to give it to Reuven Ber to smell. Not long afterwards they witnessed a true miracle.

While they were drawing Reuvi’s blood, Dr N suddenly exclaimed, “Mrs Teitelbaum, you have got to see this!” He showed her the old x-ray where the lungs were completely closed. He then took out the new x-rays. The lung, which was previously only slightly open, had opened up completely, and the lung that was closed, was beginning to open up. “Mrs Teitelbaum,” he said, “this is not a medical miracle.”

Reuvi steadily improved from that point on. He was still dependent on a respirator to breathe; therefore the doctors felt that he would benefit from a trach (a permanent airway that is surgically inserted into the neck to the throat). Only after he was trached, did Mindel see for herself just how much energy he had been using to breathe. Reuven Ber was one year old when he started maneuvering things with his hands, playing and moving in new ways. It was obvious that until that time he had been utilizing every muscle in his body to breathe.

A Hospital is Not a Home

After spending six more months in the hospital, Mindel started to plead with the doctor to be able to take Reuvi home.

Mindel knew what a responsibility it would be; she would be the primary care giver for Reuven. Her husband could not handle taking care of him, and besides, many people were influencing him to think about abandoning Reuven in the hospital. It was unheard of in those days for parents to care for a child dependent on a respirator at home. The mindset was “Children on respirators live in hospitals.” However, Mindel was adamant to have a normal family. In fact at this point, she was expecting another child. She could not fathom a life of running back and forth between the hospital and her other children forever. Her husband really could not convince her otherwise, so he allowed her stubbornness to persevere. True he was afraid. At first he was very influenced by what others were saying. The negativity was hard to ignore, but he learned to answer by saying, “I don’t take care of him, my wife does.” He knew that if Mindel was this determined, she would surely succeed.

Convincing the hospital was another story. Just when they thought there may be a possibility of bringing him home, Reuvi took a turn for the worse. Once again, they thought they would lose him. It was a Friday afternoon and Mindel called her husband to come home and take what she thought would be a last look at Reuvi. Then, once again he miraculously came around and recovered. Reuvi was a “fighter”.

Reading about all of this: the ups and downs, the struggles and the pain, make one wonder, “how did the Teitelbaums endure all of this? Where did they get the strength to wage this continuously difficult battle?”

Mindel never forgot, not even for a moment, that there is a G-d that runs this world. Her belief was always strong. She explained, “Just like He (G-d) gave this disease to Reuvi, He can take it away – he can make him better. Tehillim was my best friend. And I’ll tell you what else helped tremendously, brachas from Tzaddikim. Each time we had a problem, my husband was on the phone to Eretz Yisroel, calling every Rebbe he knew for a bracha. I still remember when the Gerrer Rebbe quoted a pasuk to my husband and in it, included the words; “Yechi Reuven” And Reuven will live! Do you know how that strengthened us? Our bitochen is the source of all of our strength and optimism. What is the alternative? To give up? Not us!

One day, Dr. N divulged, “I am sorry Mrs Teitelbaum, I do not feel I can be Reuvi’s doctor anymore. I just do not see the light at the end of the tunnel.” Mindel would not accept this bleak prognosis; Dr. N was her doctor, the one she trusted, the one she knew truly cared for Reuvi. She answered him, “Dr N tell me, if your own daughter was crossing the street and was struck by a car, would you treat her only if you saw the light at the end of the tunnel?” she made her point. She was not giving up and she did not allow him to give up either. And so she convinced him to continue doing his utmost for Reuvi. Mindel’s pregnancy was advancing and she could not imagine how she would continue running back and forth from the hospital once the newborn baby was born. She began to plan the homecoming once again – arranging nurses, making arrangements with her insurance company, etc but she did not really know if and when the doctors would agree. Then, one day, without any prior notice, Dr. N walked into the hospital and announced;

“Mrs Teitelbaum, you are bringing your son home tomorrow!”

“Tomorrow? What are you talking about? I don’t know how to put in a trach, I don’t know how to do anything on my own and I don’t have nurses in place…are you crazy, what am I going to do?” was Mindel’s frantic response.

Dr. N continued, “There is pseudomonas (a lung infection) rampant in this unit, it spreads like wildfire and Reuvi should not be exposed to it. You are taking him home!”

And so they did. The hospital prepared him quickly, connecting him to a new respirator and making all of the necessary arrangements. In the beginning, they had very little nursing care. Mindel did everything for him. She explained how even when they were in the hospital, she wanted to care for him as much as possible. Feeding him herself, diapering him – the simple things that any other mother, under normal circumstances, takes for granted – were important opportunities and meaningful moments for Mindel.

Mindel always had the attitude that this child was going to get well and would ultimately be no different than her other children. Her positive outlook helped her prevail against all obstacles. While her husband found it very difficult to see Reuven when he was very ill and to care for him on his own, Mindel was different. She handled whatever came her way in a calm and efficient manner.

When I asked her how she maintained her serenity, she answered me by emphasizing what an akshen she is – no one can change her mind once it is made up. It is this quality that has gotten her through so much, and helped her maintain her sanity. She also spoke about the power of denial saying;

“Denial got me where I am today. I just believed everything would turn out fine. I really did not accept that things were as bad as they really were. I kept my own perspective alive. Life was normal in my mind and I always believed we would get through it all.”

An Ominous Dream – A Bleak Reality

When Reuvi finally came home again, Mindel was in her ninth month of pregnancy. One night, she had a dream that she was going to have another sick child. She called her mother and said, “Ma, I had a dream that the baby is going to be just like Reuven Ber.” “What are you saying? You’re talking crazy – you must just be nervous or depressed or something!” was her mother’s response. When Mindel expressed her concern to her doctor, he also dismissed it. It should be explained that in the womb, a baby with nemaline myopathy behaves no different than a perfectly healthy baby. Only after birth when he begins to eat on his own, the problems become evident.

On January 9, 1985, Mindel delivered her fourth child. Her worst fears were realized when Shloimy began to exhibit similar problems. The feedings did not go well, and he had difficulty swallowing. They began to weigh him every morning. Mindel made a commitment to feed him only mother’s milk. She attempted to accomplish this with longer nipples, eye droppers, and syringes. She collected mother’s milk from other Jewish mothers and Jewish milk banks in order to provide nutrition for Shloimy. However, at two months of age, he suddenly turned blue and was rushed to the hospital. They decided that he too needed a feeding tube like Reuven Ber. As a result of a muscle biopsy taken during surgery, Shloimy was officially diagnosed with nemaline myopathy. How would Mindel cope with this double-blow? Mindel portrayed great strength of character as she coped with each new difficulty.

In the beginning, Shloimy did not depend on a respirator, because unlike Reuven Ber, he rarely got pneumonia or any other illnesses. Mindel attributes this to the antibodies he received in the mother’s milk. After awhile, his breathing became more and more impaired until he was finally hospitalized and placed on a respirator. It is interesting to note, that just like Reuven Ber, once he was on the respirator, he exhibited a remarkable surge of energy and began to play with his tubes. In Mindel’s words, “He was wild!” Once she took him back home, she refused to have nurses for him. Mindel wanted to mother him on her own.

Realistically, most parents in this situation would not have wanted to take any more risks. However the Teitelbaums are not “most parents”. Mindel, especially never viewed her disabled children as “less”. She never let having children with disabilities stop her from anything, not even from having more children. And so, before long she was preparing for the birth of another child.

Another Child is Born.

Grandmother Teitelbaum lived in Eretz Yisroel and had not seen the children foe many years.

Rabbi and Mrs Teitelbaum decided to take a family trip to visit Rabbi Teitelbaums mother. They went with all four children, maneuvering all kinds of equipment. They were met by an ambulance at the airport that transported them to their grandmother’s home and they spent the next four weeks traveling all over Israel. How they managed such a feat is a wonder. They were determined to enjoy themselves and to give the whole family a memorable vacation. All went well, until they returned home. The day after they got back to New York, Mindel suddenly went into labour in her eighth month and was rushed by Hatzolah to the hospital. The baby’s heart rate started dropping quickly, and they performed an emergency c-section. Mindel vividly recalls the scenario:

“When I woke up from the surgery, I immediately asked the nurse, did I have the baby?”

“Yes,” she answered “What is it?”

“The doctors will tell you.” “Is it alive?”

“I think so, the doctors will tell you.”

Once Mindel was wheeled into recovery, Dr. N told her that she had another baby boy and that he was on a respirator.

Respirators no longer scared her. However, upon hearing that his Apgar score was 00 she became frantic. The doctors explained that after he was born, it took them nine minutes to locate a heartbeat. The prognosis was very bleak – the doctor did not know if he would be able to function at all.

The physicians recommended putting the baby through various invasive tests. At this point Rabbi Teitelbaum became adamant! He refused to allow his baby to be prodded and poked. His feelings were that if the doctors thought he was, chas v’shalom going to die or remain a ‘vegetable’ then why put him through all the tests? He wanted everyone to leave him alone. Sure enough before their own eyes, the baby began to pink-up and they were discharged feeling hopeful.

For the first four months of life he cried twenty-four hours a day. Mindel described him as ‘completely out of it’. Mindel could not deal with the reality that she had another “special child”. She hoped for the best and deluded herself that he was doing well.

Reuven Ber and Shloimi were attending Sharei Chemlah, a school in Monroe for children with disabilities. Mindel considered bringing Simcha there for an evaluation. She felt comfortable enough in this environment to finally reveal her concerns. When she brought him for an assessment, the therapist took one look at him and said,” This child has cerebal palsy.” They were stunned! She could no longer deny that he too needed special attention, and therefore she enrolled him in therapy.

Mindel had her hands full, no doubt. She was juggling a life most parents could never even imagine: two children on respirators, one with cerebal palsy and two lovely healthy children. She was spending her entire days sitting in Monroe at the school Reuvi and Shloimi attended because she could not send them alone due to their multiple medical needs. Caring for her children was all-consuming. Still she never stopped wanting and hoping for, another healthy child.

Further Tests, Stronger Bitachon

Mindel’s hope became a reality when she gave birth to another baby boy. They named him Zalman Leib. He appeared to be a perfectly healthy baby at birth.

Unfortunately tragedy struck once again and he died in infancy.

The Amshinover Rebbe called Mindel to check in on her during the shiva and she asked him, “Is this it for me or can I have more Children?” “Is this it?! Chas v’shalom!” said the Rebbe. Mindel regards his words as a blessing and prophecy.

It is hard to fathom, but after all of the heartache that she experienced, her bitachon never wavered. Mindel truly believed that she would have more healthy children and that they would bring the much needed joy into the ouse as her children grew. Her dream became reality when she gave birth to not one, but three perfectly healthy children.

Mindel’s story is one of strength and one of hope. She will tell you that it was her stubbornness and her denial that saw her through. But more than anything else, it was the emunas Tzaddikim that she discussed above. “Min ken poilin a yeshua mit simcha, nisht mit atzuis.” (You can get further with happiness, than with sorrow) is the line that was repeated to her so many times throughout her life. She believes in this philosophy wholeheartedly and lives it each day.

Don’t Judge a Book By Its Cover

The average individual may never be able to comprehend or fathom Mindel’s perspective. When asked again and again, “How do you cope?” her answers are straight. “People think I am crazy. They think I should have given away my children. The truth is I don’t care what people think. If they choose to see my children through such narrow lens, it is their loss. They only see sick children! What they don’t see is how my children are always there for me. They do not see the closeness of our relationship and the love we share.”

Here, Mindel is not only speaking of her own relationship with her children. She is also referring to the relationships that these children have with each other. Although there were nurses in the house to care for Reuvi and Shloimy, Mindel's healthy children wanted to take care of the boys themselves. They knew how to suction them. They were never afraid being alone in a room with them. Because Mindel treated the boys so lovingly and so “normally” the other children followed her example. They were not ashamed of their brothers and invited their friends over to play. Rochel Leah and Lipa never hid their brothers from anyone. True, at times, the parents of their friends were afraid – they didn’t understand what was wrong with the boys. But this was just a prelude to what was to come in the future when it was time to deal with shidduchim for the older children.

Dealing with Shidduchim

Mindel's attitude on the topic of shidduchim should be an eye-opener to all. She said, frankly, “Do we not believe in the concept of bashert? How can a person tell me that if I would have sent my children away and no one knew about them, that my healthy children would have benefited in terms of shidduchim?” If every person has his or her zivug, as the Torah explains, then what difference does what Mindel decided to do with the other children make? Because her own children grew up with Mindel’s positive attitude, they did not resent their situation. They never asked questions like, “why me?” they simply had the emunah that Hashem would provide them with their mates in the right time – and He did.

Growing Older

As for the boys, once Mindel felt that the boys reached a point where she had exhausted all that therapy could do for them, she decided, “ Ok, now it is time to just enjoy all we can and give them a good time.” The children have wonderful memories of all the places they visited – day trips, outings and even some elaborate summer vacations and adventures. There was one trip that stands apart from all the others. The trip to Eretz Yisroel for their son Lipa’s wedding.

Eretz Yisroel

Mindel was determined to take the entire family to Israel for Lipa’s wedding. Planning this trip was a story in itself. First, the Teitelbaums had to buy new, smaller respirators to take with them for Reuvi and Shloimy. Then they had to get clearance from the doctors to fly on ELAL and ELAL had to arrange to have oxygen on board for the boys.

Then there was the luggage. The boys required six suitcases alone to contain all of their equipment and belongings. They required feeding tubes, formula, gauze, gloves, suction equipment, etc. All in all the family (the parents, seven children, two nurses and Mindel's sister) brought thirty one suitcases with them for this trip! Yedei Chesed came with the trailer connected to a suburban to transport the luggage and the family to the airport.

Hatzolah of Boro Park was awaiting them to be of assistance. In Eretz Yisroel they were met by the ambulance service, Ezra L’marpah. (Coincidentally, the two drivers were named Reuven and Shloimy.) Since they could not find an apartment available, they all moved into her married daughter, Rochel Leah’s apartment. Imagine all of those suitcases in one little apartment.

Everything proceeded smoothly until Shabbos arrived. The chasan’s aufruf was in Kiryas Yismach Moshe so they had to stay in a different apartment for Shabbos. They were not aware that in this apartment all of the electrical outlets had a Shabbos clock. On Shabbos the clocks went off, and the batteries the boys were relying on for their respirators blew. Even their chargers blew. Luckily they each had one spare battery that the nurses prepared and thankfully they lasted through that Shabbos!

The wedding was to take place on Monday and Mindel had to spend the entire day Sunday traveling around Israel to get new batteries and chargers for the respirators. It was an ordeal, but when the wedding day arrived, they were all set and everyone had a wonderful time. It was an amazing simcha and well worth the effort.

The boys loved every single minute of it. In general, Mindel explains how they love chasanahs. The music, the dancing, the excitement, all thrills them so. There was no way that Mindel would have left them behind. This was one of her most memorable moments – a time when the whole family was together for a simcha.

The highlight of the wedding for the boys was seeing the Rachmistrivke Rebbe. Chanukah arrived shortly after the wedding. Every night they went to a different rebbe for the menorah lighting. They loved to go to the rebbes! They also traveled a lot with Ezer Mitzion, touring the countryside. They davened at the Kosel, visited Meron, and went to the famous Biblical Zoo, among many other places.

The return trip went smoothly. This time they had plenty of oxygen and again, Yedei Chesed helped transport them. A police escort led them out of the airport straight off the runway.

The Bar Mitzvahs – To Do or Not to Do?

When it was time for Reuvi’s Bar Mitzvah, everyone tried to discourage the Teitelbaums from making an elaborate affair. “Keep it small, in your house,” their friends suggested. But no. The Teitelbaums saw it differently. Their response was, “For Reuvi, Shloimy and Simcha Ziesel, their Bar Mitzvah’s will be like weddings. Perhaps this day will be the most special one they will ever have.” And consequently, Mindel prepared their Bar Mitzvah’s just like she would have for any other child. Each child had his own special night, and each child loved every moment of it. The beautiful Bar Mitzvahs were held in a hall, with music and dancing. Even thought the boys could not speak publicly and recite divrei Torah, friends and family members made speeches, and each occasion was a true simcha. The highlight for each of the boys was putting on tephillin. The boys could not don tephillin on their own, and so this became a special time for Rabbi Teitelbaum and his sons.

Rabbi Wachsman’s Yeshivah

Another very special aspect of the boys’ lives is Rabbi Ephraim Wachsman’s yeshivah Mesivta Meor Yitzchok. This yeshivah is located right next door to the Teitelbaums home. Every Sunday and whenever Reuvi and his brothers were not in school in Monroe, the bochurim from the yeshivah would come over to put tephillin on them. The boys looked forward to this. Eventually, rabbi Wachsman installed a ramp so the boys could come to yeshivah in their wheelchairs. Reuvi and Shloimy began to attend shiurim in the yeshivah as well. Reuvi would listen so intently; his concentration would not waver. They both loved to learn and it was such a tremendous opportunity for them to sit in on a shiur in a real yeshivah. They loved the environment, the boys, and especially Rabbi Wachsman.

Having friends and other people who care in their lives is surely a bracha. The yeshiva offers the family the opportunity to have caring people around who are not doctors, nurses, or concerned family members. Rabbi Wachsman and his students play an integral part in the Teitelbaums life.

For Mindel, Shaarei Chemlah, the school her sons attend in Monroe, New York, is a tremendous support system. She is touched by their genuine, caring and devotion and admires the ways in which they look for innovative ways to help their students. She explains:

“I can trust them with my children – I know that they have their best interests at heart. We are one family: the principal, the teachers, the therapists and me. For fifteen years this school has been a second home for my children and me. They love the environment and I love that they are going to school with frum teachers, assistants and other heimishe children. The positive environment is excellent – they focus on what the children can do, not what they can’t do. The members of the staff gave really become my friends over the years.”

Rabbi Teitelbaum agrees with his wife. He is grateful that the boys have this wonderful school and most of all he is grateful to Mindel. Today he openly acknowledges that all her stubbornness and hard work have really paid off. He thanks her and Hashem daily for her fortitude. He knows that it is only because of her underlying love and continuous advocacy that they have come so far. Rabbi Teitelbaums children have helped him grow in ways he never expected – he is truly a happier, better person because of his children and they give him so much joy and nachas in their own unique ways.

Not everyone can be as fortunate as the Teitelbaums when it comes to having an optimal school environment, but every parent can work hard to be involved and stay involved with those who are caring for his or her children.

“Have a good relationship with the teachers and therapists. Because my children were on respirators, I had to be with them all the time. This gave me the opportunity to develop relationships with those who were working with my children on a daily basis. Things did not always go perfectly and there were times when I had to speak up, but my message is this: Parents – Stay and positive and upbeat if you want the teachers and therapists to work with you. Negativity won’t get you anywhere.”

This painful travelogue through tragedy and valor is an inspiration and a guide to us all.

Mindel Teitelbaum is unlike any other person I have known. May Hashem bless her with the strength and courage to continue to give so much to her family. While it is unbearable for others who care about her to continually watch her endure so much tzuris, it is clear and obvious that Mindel possesses a unique optimism that keeps her going.

Her underlying faith and strength is a guiding light for us all. No one can explain why one family has been so challenged – forced to contend with so much. All that others can do is offer Mindel, and other families raising children with disabilities, their sincere support and friendship.

A MOTHERS MESSAGE

Mindel’s message to other parents of disabled children is this:

“Enjoy your children for as long as they are here. Enjoy each moment and see them as the gift that they truly are. Don’t focus on their disabilities – focus on their abilities. Look beyond their limitations and encourage their potential. Encourage them to pursue what they like. Don’t hold them back from trying new things – allow them to grow as much as they are able.”

Another strong point that Mindel felt important to share is about appearances:

“Appearance is very important. People look at disabled children differently. I always go out of my way to make sure my children look clean and well put together. I dress them beautifully and aim to keep them looking as appealing as possible. I see the difference it makes in school and worth their therapists too. They are actually treated differently. Because if I treat them like they are ‘worth it’ others do too.

As a mother I also try to have myself put together. No one has to really now what is going on. You do not have to become the “rachmanas” of the town. Take care of yourself. Dress up. You will feel together if you look together!”

An Open Letter to My Son…by Mindel Teitelbaum

Reuven Ber Teitelbaum was born in the year 1983 with a rare muscular disease called nemaline myopathy. He recently passed away three month shy of his nineteenth birthday. As you may have read in the previous article about the Teitelbaum family, despite Reuvi’s disease his family constantly strived to give him a rich and meaningful life. Although Reuvi was dependent on a respirator to breathe, a stomach tube for nutrition and confined to a wheelchair, he had an active mind and a personality all his own. The following is an open letter to Reuvi from his mother, Mindel Teitelbaum.

Reuvi, can it be that you are really gone? How did this happen? Nothing is the same without you. Despite all that others may have assumed about your life, always know how much joy you have given me. You were always the kind of child who always wanted to be where the action was and you kept me on my toes. You never wanted to be left behind, and so I did my best to see to it that you rarely were. I wish I could take you to meet a new Rebbe today the way you used to ask me to. I wish we could go to a chasanahs together where you could enjoy the simcha. Your albums filled with rebbe pictures are still here and I will never forget the way that you could tell me the names of each and every one.  Oh, how you loved to meet them face to face--they always made the time to receive you and give you their brachahs.  Despite the fact that you could not dance, you loved music.  We all miss the way that you would drum on the crystal glasses at the Shabbos table while Tatty would sing zemiros.  Despite your wheelchair, when the meal had concluded, you and Tatty would dance together with such chayis.

 

Every day I see the beautiful works of art that you embroidered with needlepoint.  Yes, of course, they still hand on the walls and fill our home with thoughts of you. I still remember when you were fascinated with cars and the way you learned about the details of so many.  Like a typical boy, you hung up posters of some of your favorites in your room.

 

Reuvi, I know how you wished to keep exploring and visiting new places.  Maybe it looked hard to others, the way we would travel on family outings schlepping so much equipment and supplies, but I will never regret a single experience we had together: our trips to Hershey Park, our summers at Yeshiva Ohr Yisroel and especially our trips to Eretz Yisroel.  I miss watching your face light up as you speak about our recent trip to Israel.

 

People never knew you--the real you.  How you would bicker with your siblings like any other child and how, despite your limitations, you loved to play with other children.  From Bingo to building blocks, I tried my best to encourage you in every way, and seeing you smile was a timeless, priceless gift.

Your kesher with Shloimy was so strong,  You shared a room for fifteenyears and now he will not even go down there.  He cannot stand being separated from you. Every morning you woke up together, washed negel vasser with each other, cared for each other.  Going to school is not the same for him without you.  Nothing is.

 

Everyone at school misses you so much.  Your teachers, your therapists, your friends.Everyone recalls how you loved concerts.  Music was a focal point of your life--Mordechai Ben David and Michoel Schnitzler even came to be menachem ovel at your shiva.

 

Learning Torah was the highlight of your days and Rabbi Wachsman and the bochurim miss you being right next door.  They miss being able to come over and put tefillin on you.  They miss your presence at their Sunday shiur.  They also remember how you so looked forward to learning with them.  Rabbi Wachsman speaks so highly of you, recollecting how you would listen so intently to his words, your tremendous concentration and love for Torah.  You loved to learn and it wa such a tremendous opportunity for you to sit in on a real yeshiva.  You loved the environment, the boys, and Rabbi Wachsman.  Please know that the entire yeshiva came to your shiva.  "He was one of my boys," explained Rabbi Wachsman.  "Today, he is truly missed."

 

Most of all, you are so missed by your family, by me.  You were such a part of our house.  I lost a child who was nearly nineteen years old.  For all of those years you were home with me--we were together.  We were so attached.  Other parents who have children who are healthy and independent expect to see less and less of them as they grow.  They continue to love them, but they begin to detach themselves and that is normal.  But with you, Reuvi, things were different.  I never imagined what life would be without you by my side, and by the sides of your brothers and sisters.

 

But don't get me wrong.  Of course I remember your independent streak.  How you loved to be the boss and do as much as you possibly could on your own.  Like with your work program.  So much of your personality came to light when you were working.  You loved going on the bus to work, and whether we were heading to the Simcha Candle Factory in Monroe or the pillow factory, you would go with so much enthusiasm.  People liked you, Reuvi, people alwyas liked you.  I know that so much of your self-confidence came from how the people at work interacted with you.  You loved to tell people what to do and they loved to see how your suggestions often worked out just right!

 

Reuvi, you know my perspective, "simcha accomplishes much more than negativity."  It is really hard for me to be b'simcha now without you.  I cry alot these days, but I know that although you had a life that was filled with difficulties due to your disease, nevertheless it was filled with light and joy.  Thank you for giving me nineteen years of life together--I can't say it was enough, but I can say that each and every moment was precious.

 

Mommy