Update log: Neshama Tehila bat Chana
Click for pdf print version8/2/13
On behalf of Alysia and myself, we would like to thank everyone for their love and support during this very difficult time. We understand and appreciate that everyone is very concerned, and would like to hear news about our sweet little Tehila. We have been trying to keep everyone informed to the best of our ability, but clearly, it has not been possible for us to contact everyone personally. In fact, I'm sure that many of you reading this email right now were not even aware of what has transpired.
Here is what happened.
On Tuesday morning, we sent Tehila off to school, and like every other morning, she sang "Modeh Ani" with us, and gave us our kisses and hugs. I was on my way to work, and received a call from Alysia that Tehila had a seizure in school, and had gone into cardiac arrest. CPR was administered, and after about 40 minutes, they were able to restore her pulse. They rushed her to JFK Medical Center, the local Hospital in Edison, NJ, and when Alysia and I arrived, we found Tehila barely clinging to life.
A neurologist examined Tehila in the emergency room. Based upon his examination, he suggested that brain death had occurred, and they recommended that we discontinue life support measures. We consulted with Rabbi Eliezer Kaminetzky who suggested we contact Rabbi Moshe Tendler immediately. We were fortunate to locate Rabbi Tendler in Israel, who explained that we require a complete "brain stem protocol" before any withdrawal of support can be considered - which we insisted upon. A series of sensitive exams were done, and to the surprise of the doctors, some brain activity was detected, and we requested that every possible measure be taken to save her life. Within a few hours, Baruch Hashem, Tehila had stabilized sufficiently for transfer to a larger medical facility, and she was taken to St. Peters Hospital in New Brunswick.
The medical staff at St. Peters, all of whom have been very kind to us, did everything possible to give Tehila the best chance to pull through. By late Tuesday night, miraculously, Tehila's vital signs began to stabilize. In the aftermath of such a severe neurological trauma, the biggest danger is the subsequent swelling of the brain. In order to minimize the swelling, Tehila's body temperature was brought down to 95 degrees using a cooling blanket, and was kept that way until late last night. Little by little, step by step, Tehila has been showing signs of improvement, and once again, the doctors are truly amazed by her.
Going forward, we are realistic, and understand that the situation is extremely dire, and we have no way to predict which way things are going to go. As things stand now, it is clear that we are in an "et ratzon," and to use a very telling metaphor, the "Bet Din shel ma'alah" (the Heavenly Court) is now convening about our Neshama Tehila bat Chana's future. Furthermore, Alysia and I understand and believe that whatever the outcome, we place our complete trust in Hashem, and we humbly accept His will.
Having said that, we were blessed beyond all measure when this beautiful girl was born to us 17 years ago, and we have cherished every day that we have had her. We have nurtured and protected her with every fiber of our beings, and in return, she has filled our lives and those of everyone around her with only abundant love and tremendous joy. Even more importantly, Tehila has educated all of us about the importance of having pure emunah (faith), and the enormous power of tefilah (prayer). During the years that she has been with us, she has demonstrated time and again that Hashem runs the world, and decisions remain with Him, regardless of the dictates of "modern medical wisdom."
Now, as we stand in the midst of yet another enormous nisayon (trial), we are watching a familiar scenario unfold before us. When this horrible event first occurred, even after Tehila thankfully pulled through on Tuesday, the doctors spoke to us to make sure that we understood the dire nature of the situation, and warned us against being overly optimistic. Our response to them, as it has always been, was that the decision is in G-d's hands, and they should know that Tehila is a miraculous little girl, and should not be underestimated.
We are now in our fourth day since Tehila's cardiac arrest, and once again, baruch Hashem, there have been steady improvements. Tehila has been removed from the cooling blanket, her body temperature has returned to normal, and is resting much more comfortably. Her pupils, which were fixed and dilated on Tuesday, are now showing slow signs of response. She has now been almost completely weaned from the medications administered to stabilize her vital signs, and she has been maintaining them on her own. They have also gradually begun administering feedings. She is still completely unconscious, and is being ventilated artificially, however, tests today have shown that when the ventilator is lowered, she is able to initiate breathing on her own.
So this is where we are. Tehila, true to form, has miraculously pulled through, and our sweet little angel is still with us. However, we really have no way of predicting what tomorrow will bring. We have complete emunah that the decision remains solely with Hashem, regardless of the medical opinions that swirl around us. Tehila has humbled even the best of doctors, and b'ezrat Hashem, she will continue to do so.
Any parents who have unfortunately been where Alysia and I now stand can understand that feeling of helplessness when the life of your child hangs in the balance. But we firmly believe there is something we all can do on Tehila's behalf, that can - as if to say - "sway the Bet Din Shel Ma'alah" to a verdict in favor of life for Neshama Tehila bat Chana, so that our miracle girl will continue to bless us with her beautiful presence in our lives.
We would like to profusely thank all those who have been so helpful to us during this very difficult time. Baruch Hashem, there are so many of you, and we couldn't begin to mention everyone and adequately express our gratitude. However, you all know who you are, and we look forward to the opportunity to thank you all personally.
There are no sufficient words to thank everyone for their concern, and for all those have been saying Tehillim and have had Tehila in their tefilot (prayers). We are certainly familiar with emails that go around, requesting urgent prayer and Tehillim for a person in dire need. However, we also understand that everyone still has busy lives, and do not always have the time, nor can one easily interrupt what he or she is doing to say Tehillim in the middle of a busy day. But we do request however, if you can take but a moment - even just 10-15 seconds - to think about how much Tehila has taught the world about the meaning of true emunah and trust in Hashem. Then please take a moment to thank Hashem for all the brachot (blessings) in your own lives, and this will be an added z'chut for Neshama Tehila bat Chana.
Alysia has also suggested, for those who are able, to please light Shabbos candles 5 minutes early in the z'chut of a refuah sh'lemah for Neshama Tehila bat Chana.
We will continue to send updates on Tehila's progress, and b'ezrat Hashem (with G-d's help), we will hope to bring only better and better news on her progress. Feel free to forward the emails to anyone whom you feel would like to be updated, and please let us know if there are any email addresses you would like us to add to our send list.
With love to all,
Ira & Alysia HellerFri 8/2/13 - 3:39pm
I switched with Alysia, who is now in the hospital with Tehila. I just returned home to gather some things, and we will both be in the hospital with Tehila for Shabbos.Shortly before I left, the physical therapist came in to examine Tehila. Her limbs, which were extremely tight since the episode, have loosened considerably. During the examination, Alysia thought she would try asking Tehila to move her fingers, and suddenly, there was a tiny wiggle in the fingers of Tehila's right hand. Thinking it might be coincidence, Alysia called us to watch, and asked her again - sure enough, there was another little wiggle!
Again, please please keep the tefilot coming, and to reiterate my earlier request:
"if you can take but a moment - even just 10-15 seconds - to think about how much Tehila has taught the world about the meaning of true emunah and trust in Hashem. Then please take a moment to thank Hashem for all the brachot (blessings) in your own lives, and this will be an added z'chut for Neshama Tehila bat Chana."Wishing all a Shabbat Shalom umevorach, and be"H, will look forward to reporting only b'sorot tovot!
Ira & Alysia
PS - Please excuse us if we are unable to return phone calls at this time. Additionally, my voice mail keeps getting filled up, so it may be difficult to leave a voice message. Email is the best way to communicate with us, and we assure you, we will read every one of them. Anyone who would like to communicate directly with Alysia can do so at alysiaheller@aol.com
Motaei Shabbat 8/3/13 2am
Another very long and draining emotional roller coaster ride over shabbat here in the hospital.
Yesterday, Tehila's pupils had slowly began reacting to light, a very positive sign, indicative of neurological recovery. However, after examining Tehila at about 5:30am this morning, the nurse notified us that Tehila's pupils had once again become fixed and unreactive, as they were on Tuesday. I went to shul this morning feeling very discouraged.
When I returned to the hospital from shul, I found Alysia extremely upset. Apparently, the neurologist had come in to evaluate Tehila, and had done another "brain death protocol" to determine if brain death can be declared. According to his evaluation, he felt that Tehila does meet the "brain death criteria," which would mean that there is no more brain activity, and no recovery is possible. Needless to say, we were beyond devastated.
After sitting for a while, not quite knowing what to do with ourselves, we finally tried to choke down lunch (not too successfully). When it came time for Birkat Hamazon, we decided to do it together with Tehila, as we always do at home every Shabbos as part of our "family ritual." We set ourselves up on either side of Tehila's bed, and started benching together with her, but moving her hands and doing all of her usual parts for her. At some point, I looked at Tehila's face and could barely believe what I saw - it was a tear! Alysia called out "Teetee, if you can hear me, please wiggle your fingers!" ...and she did. We called over the nurse and asked Tehila to do it again, and she did...
We reported the event to the attending Physician in the PICU, Dr. The (pronounced ”Tay,") and he immediately ordered a brain study, which would determine if there was any blood flow to the brain. At about 3pm this afternoon, they took her down for the study. A couple of hours later, waiting in the room for the results of the study, Dr. The came into the room, practically jumping for joy. He exclaimed, "she's a miracle! there's blood flow to the brain!" We told them from the beginning that she was miraculous, but they are finally figuring it out for themselves.
Once again, our "miracle girl" is demonstrating to everyone that it is Hashem that runs the world. Please please please continue to daven for her, she is clearly fighting for her life!
To all those who lit Shabbos candles 5 minutes early yesterday in honor of a refuah sh'lemah for Neshama Tehila bat Chana, and to all those who have been davening for her, we cannot thank you enough.
A number of people have asked if they can visit Tehila in the hospital. We thank you so much for your support - it truly means the world to us. However, we ask that for now, people refrain from coming to the hospital. This is an extremely crucial and sensitive period in her recovery, and she very much needs to remain undisturbed.
We will continue to keep everyone posted, b'ezrat Hashem, with only b'sorot tovot.
Love,
Ira & AlysiaSun 8/4/13 11:38am
Tehila's blood pressure was running a bit high last night, but Dr. The feels that it is attributable to Tehila's heart working harder to try to get more blood to her brain for her much needed healing.
I just put on one of Tehila's favorite videos, and b'ezrat Hashem, that will help to further stimulate and encourage her. We continue to hug and kiss her, speak to her, and tell her over and over again that we are here, and will be here waiting whenever she is ready to open her eyes, be"H.
This morning she looks more peaceful, and her blood pressure has calmed down. We always knew in our hearts that Tehila does not give up, and as of yesterday, we have "scientific" confirmation as well that she is still with us, and fighting to recover. For now, everything medically possible is being done to help her. As Tehila has dramatically demonstrated time and time again, that the ultimate decision remains with Hashem, and she continues to amaze and inspire all who come in contact with her.
Most importantly, Alysia and I ask that you take a brief moment to thank Hashem for all the wonderful brachot in your own lives, b'zchut refuah shlemah le'Neshama Tehila bat Chana.
With love to all,
Alysia & IraPS - Thank you again for all your emails and beautiful words of chizuk. Again, they are very much appreciated, and we are reading every one of them.
Sun 8/4/13 9:35pm
Tehila had a stable day - until about an hour ago. For reasons still not understood, Tehila's heart briefly stopped. Additionally, her blood pressure, which was running rather high through the night, and was very stable through the day, has now begun to drop.
They did an EKG, and are now administering drugs to stabilize her vital signs - which had been basically maintaining on her own. Alysia is in the hospital with Tehila now, and is consulting with the doctors.
B'ezrat Hashem (with G-d's help), this will be a passing glitch in her recovery. Please have Neshama Tehila bat Chana in mind, and continue to thank Hashem for all your abundant brachot (blessings)...
PS - Tehila's nurses, medical staff, and others of various faiths have asked to be a part of our prayer vigil on Tehila's behalf. I am going to make an effort to remember to translate the Hebrew terms
Sun 8/4/13 11:10 pm
I am returning to the hospital to be with Alysia and Tehila. It seems that Tehila's may be starting to deteriorate. Please step up your tefilot (prayers) on her behalf.
Mon early am 8/5/13 12:45 am
Many thanks to all those who responded so quickly with their thoughts and tefilot (prayers). Tehila's conditioned has stabilized for now, though we are still not completely sure about what is causing these recent issues.
I will be saying Tehillim (Psalms) by her bedside for as long as I possibly can. Will report again in the morning.
Monday 8/5/13 - 5pm
After rushing back to the hospital late last night, after Tehila's condition had become unstable, I sat by her bedside reciting Tehillim (Psalms) together with special tefilot lir'fuah (prayers for healing) into the wee hours. I was comforted by many emails of support I had received from people who had read my distressing update - even at such a late hour. Though it was just me and Tehila there in the room, I can truly say that I felt that I was not alone, and actually sensed that so many tefilot were joining together with mine from many other places, and were no doubt giving them added strength. I continued to daven by Tehila's side until I could no longer keep my eyes open.
By midway into the night, after Tehila had received a number of medications that gave support to her vital functions, her condition continued to stabilize, baruch Hashem (thank G-d). By morning, Tehila looked very comfortable, and hopefully, has gotten back on the path to healing.
If I may, I would just like to take a moment to reflect with regard to these emails that Alysia and I have been sending. I have to admit that I was extremely hesitant to go ahead with something like this for a host of reasons. However, knowing how Tehila is loved by so many people, we knew people would want to be frequently updated on her progress. Additionally, so many things have happened so fast, it is nearly impossible to keep everyone up to date via personal communication, and we begin to forget what we've said to whom. In this way, we know that anyone who truly wants to keep updated on Tehila's progress can know almost immediately should there be anything of significance to report.
Second, Alysia and I fully believe in the power of tefilah (prayer), and therefore, the more people that are davening (praying) for Tehila, the better her chances will be to pull through. Our list of email recipients has already swelled well past a hundred, and we understand people have been forwarding the emails to others as well. We are truly humbled and overwhelmed by the beautiful outpouring of concern and participation.
Please know that we surely understand that we are not the only family who has been blessed with a special child, nor do we think we are the only family to have suffered through the tribulations of a critically ill child. Nevertheless, we were spurred on by nothing other than the desperate mission of saving our daughter's life, even after the doctors had given her no chance of survival when this happened to her on Tuesday morning. The fact that Tehila managed to hang on to life after Tuesday morning's horrific events has completely shocked and confounded the doctors who treated her that day. Though they all asserted that there was nothing they could realistically do for her, our response is what it has always been - that Hashem runs the world, and it is He who will decide when is the proper time for Tehila to return to him - not the doctors.
We know that Hashem is "shomeah kol tefilah" - He hears all prayers. So when confronted with a situation like this, we have "gathered our troops" to do whatever is necessary to inspire Hashem's rachamim (mercy), and He will thus be "persuaded" that our prescious little Tehila, who inspires so much good in the world, should surely merit to stay here longer.
Alysia and I have been privileged beyond all measure in having been blessed with a child as miraculous and inspiring as Tehila. Those who are personally acquainted with our family know how many layers of considerations are involved in caring for her, and the extent to which our entire family revolves around her special needs. Nevertheless, there is not a scintilla of doubt that every member of our family, from the oldest to the youngest, would without a moment's hesitation embrace every last sacrifice - and then some - if Hashem would only give us back our beloved Tehila.
It is true that Tehila has been a living miracle who has repeatedly defied the odds and the medical naysayers. However, I can honestly say that we can not possibly have enjoyed these 17 beautiful years with our Tehila, had she not been under my wife Alysia's watchful eyes. It has primarily been Alysia's keen medical intuition and diligence that has nurtured Tehila from her early days as a hospitalized, medically fragile infant, to a stable little girl who was able to go to school and live at home with her loving family. For this, I have enormous gratitude to Hashem, and recognize that none of it could have truly been possible without my wonderful wife as Hashem's emissary.
I was pondering earlier about a way we can possibly "raise the bar" on our tefilot for Tehila. As an addendum to the tefilah (prayer) that I earlier proposed, perhaps - after beseeching Hashem for a refuah sh'lemah for Neshama Tehila bat Chana, and after we have focused upon and thanked Hashem for all the beautiful brachot (blessings) in our lives, perhaps we can then focus on someone other than Tehila and ourselves. Let us think of another person or people in your lives who face a difficult tzarah (tribulation) and also need a yeshuah (salvation). Then give that person a few moments, and daven for their yeshuah. ...and of course, Tehila merits as well. Let's please give it a try!
Thank you to all those who stuck with me through this "megillah." Alysia and I very much appreciate all the beautiful feedback and support - it has truly meant the world to us. B'ezrat Hashem, we hope soon to be reporting only b'sorot tovot regarding our beloved Teetee's progress.
Monday - 8/5/13 - 11:00pm
Every time I speak to Tehila, her eyes begin to tear - I believe she's crying. Alysia said she had the same response from her today. Tehila PLEASE open your eyes!!
Tues - 8/6/13 - 9:50am
Alysia and I would like to thank, from the bottom of our hearts, all the people who have been saying Tehillim and davening for our Tehila. To those who have been so personally helpful to us - in so many ways - we are ever so grateful. You know who you are, and we will continue to deliver our hakarat hatov (gratitude) personally.
Alysia and I have been in this "place"' before, behind the eight-ball, in an intensive care unit, and being told that there is no hope. Tehila has proven them wrong before, and b'ezrat Hashem, she will do so again.
When I lay down to sleep last night, I did so with a broken heart. But then decided to follow my own advice. I asked Hashem for a refuah sh'lemah for Neshama Tehila bat Chana, I thought of all my own abundant brachot, and then I thought of the little girl in the next cubicle and prayed for her refuah as well.
11:55am
We have spoke to the doctors this morning, today is going to be a very pivotal. Tehila is currently sedated subsequent to her cardiac episode on Sunday night. They are going to begin slowly removing the sedation, and we pray that Tehila will begin to respond.
Again, there are no words to express how comforted and encouraged we are by the outpouring on Tehila's behalf. This is a crucial time for her...
Late-Tues/Early-Wed - 8/7/13 12:45am
Sedation was lowered today in the hope that it would enable Tehila to begin to respond. Though she remained stable throughout the day, she unfortunately showed no increased signs of responsiveness. Needless to say, we are disappointed.
.
When I arrived at the hospital this evening, Alysia handed me an article that the doctors had given her on the subject of "brain death," which they had requested we read. The doctors had also asked to meet with us tomorrow, conceivably to discuss this topic and its relevance to Tehila's future treatment prospects.Rather perturbed about this - to say the least, I called our very dear friend Rav Dovid Goldwasser, shlit"a, to discuss what had transpired. I told him about the fact that the doctors want to meet with us tomorrow, conceivably, to discuss a possible declaration of "brain death." Without missing a beat, Rav Dovid vehemently replied, "they will do nothing of the sort! Tehila is our miracle girl!!" Enough said.
About an hour ago, I noticed an uneven pattern of breaths on Tehila's ventilator, which would be impossible if Tehila were not initiating breaths on her own (a patient who is "brain dead." is incapable of this). When respiratory came in, it was confirmed - Tehila has been taking intermittent breaths on her own!!! I immediately texted this news to Alysia, and we wanted to share this news with everyone right away. It's but a small sign - but a very important one!
Erev Shabbat Kodesh 8/9/13
Alysia and I would like to thank everyone who have been anxiously inquiring about Tehila progress. We understand how much people care, and we are so touched by it. I take full responsibility for the delay, as I am the "scribe." However, please know that though the message comes through my keyboard, Alysia and I prepare these updates together, and they come equally from the two of us.
Tehila has been basically stable, for the most part, since we last updated. We have been facing intermittent rough moments in which her heart has slowed down periodically, and at other times has had elevated blood pressures. So far, everything has been pretty successfully managed with medications, and the medical staff is monitoring her very closely.
Very importantly, however, is that fact that Tehila has continued to show the ability to initiate breaths over and above the ventilator, and the doctors have verified that she has been consistently doing so. At this point, they have abandoned their previous conclusions drawn from their "brain death protocols," and will no longer be applying them to Tehila - baruch Hashem.
Nevertheless, Tehila is still unresponsive, and has shown no signs of regaining consciousness since her cardiac arrest on July 30th. Her pupils are still fixed and un-reactive, and she is unable to move her extremities. Nevertheless, we have by no means lost hope. Despite her condition, her body has not begun to show excessive edema, as often happens in these situations, her color is good, and she looks very peaceful. Needless to say, we have been consistently speaking to her, singing to her, and giving her loads of hugs and kisses.(as always). Realistically, we understand that we face a very challenging situation, and cannot make any projections regarding the extent to which she may be able to recover. However, it is still too early to tell, and we must not forget, she is still our miracle girl...Yesterday, Alysia and I discussed with the doctors Tehila's prospects for moving forward (now that "brain death" has been removed from the vernacular, thank G-d) . At this time, it looks like Tehila will benefit from having a tracheostomy (aka "trache") tube inserted (which she has had in the past, but was removed when she was six years old). By replacing the breathing tube with a trache, we remove a potential source of infection and injury to her airway. Tentatively, this is planned for early next week. Plans down the road of moving her into rehabilitation were also discussed. Tehila most certainly has a long road ahead, but the discussions now are dramatically different from those of a week ago, when they basically gave her no hope of survival.
These difficult circumstances in which we now find ourselves bring us back to the period of time that Tehila first became ill as a baby, and we ended up in a Pediatric ICU with her for many months. Then too, we were given little hope for her, and at times there were even those who tried to pressure us to "let her die," chas v'shalom (G-d forbid). Nevertheless, Tehila pulled through then against all the odds, and in the subsequent 17 beautiful years with her, she has brightened all of our lives, and has profoundly affected and inspired thousands and thousands of people.
On one hand, it feels as if we have returned to those nightmarish days of 17 years, when day after day we faced on crisis after another, and had no idea of what was going to be. On the other hand, we are now able to look back at how Tehila has never given up, and has always found a way to fight her way back through what always seemed to be the most hopeless of circumstances. Back then, we had no idea if or how long Tehila would survive, but now, after having been since blessed with 17 years together with our Tehila, every last bit of struggle was more than worth it.
Alysia and I consider ourselves privileged to be the keepers and protectors of this little treasure, and we will continue to be so. We have no way of telling if or how much Tehila will recover, but whatever it is, we love and appreciate her today as much as ever, and will continue to cherish her regardless of how much brain function she is ultimately able to recover. Needless to say, we miss her sweet little personality terribly, and we are praying day and night for her to just finally open her eyes and reach up to give us our hugs. However, there is no question that we will fully accept and appreciate whatever circumstance Hashem ultimately chooses to give us.
On behalf of our family - Alysia and myself, Tehila's brothers Yehuda, Aharon, Moshe, & Yosef, Grandmas Erika and Esther, and our entire extended family, we are ever so grateful to all of you - our very dear friends and neighbors, Tehila's nurses, and the literally thousands of others who are rallying around this very unique little girl. As we all face this nisayon together, we are coming to understand more and more how Tehila's mere presence in the world has profoundly affected us all, and b'ezrat Hashem, will continue to do so.
Of course, we will continue to update everyone, and will look forward to reporting and be"H celebrating every little piece of Tehila's progress together, as we move forward.
Thank you so much to those who have participated in Tehillim groups on Tehila's behalf. Thank you to all those who have recited extra chapters of Tehillim in shul, and made misheberach's on her behalf. We also thank all those who have simply had her in mind, counting your own brachot, and sending your wishes to others in need - In Tehila's z'chut.
To all those who are able to make some time for Tehillim, Rabbi EM Teitz, Moreh D'asra of our Elizabeth/Hillside, NJ community, recommends Tehillim chapters 20, 30, 121, 130 and 142 as specifically relevant when davening for a refuah shlemah - then using perek 119, say the paragraphs in succession, spelling out the Hebrew name Neshama Tehila (nun, shin, mem, heh, taf, heh, yod, lamed, heh).We again thank all those who last week who had Tehila in mind while baking challah for Shabbos, as well as those who took upon themselves to light Shabbos candles 5 minutes early in honor of Tehila's refuah sh'lemah. We are still in and et ratzon - a crucial time in Tehila's recovery, and we would like to make the same request again this week, for those who are able to light Shabbos candles 5 minutes early b'zchut Tehila's refuah shlemah..
Thanking everyone again, and wishing all a Shabbat Shalom umevorach!With love from the Heller family
Sunday 8/11/13
Shavua tov everyone. We have heard that 73 challot were baked for this Shabbat b'zchut refuah sh'lema to Neshama Tehila bat Chana. We are so touched and grateful, thank you!
On Leil Shabbat, Alysia and I stood on either side of Tehila's hospital bed, each holding one of her hands, and we sang Shalom Aleichem with her as we do every Shabbat. While doing this, we noticed Tehila's hands slowly curling around ours. Alysia said "Teetee, can you squeeze mommy's hand?" There was a brief pause, and then she squeezed mine! (still needs to get her right/left orientation straight). Alysia asked again, then she squeezed Alysia's hand. Just to make sure we are not victims of our own wishful thinking, Alysia called in the physical therapist, who confirmed that the movement was in fact purposeful, and she documented it. It was a wonderful way to begin Shabbos.
Tehila was basically stable through Shabbos. There were some rough moments in which her blood pressure rose, sometimes significantly. Each time, however, the situation resolved with the necessary intervention, and she quickly stabilized. It is very likely that these spikes in her blood pressure may be attributable to distress that she is feeling, at times perhaps a result of her lungs needing to be cleared, or discomfort resulting from the breathing tube. The positive side, if this is the case, is that she is responding appropriately to discomfort, which further bolsters the point that her brain is functioning, and is be"H healing.
As mentioned previously, Tehila will be having a tracheostomy procedure early tomorrow, which will minimize the discomfort and other potential risks associated with being intubated for an extended period of time. Surgery has been scheduled for early tomorrow morning. Please have Tehila in mind in your tefilot tomorrow morning, and wherever possible, please take the initiative to recite extra Tehillim (Psalms) on her behalf. Most commonly recited are: kuf chaf alef, and kuf lamed (121 and 130).
If I may, I would like to add an insight.
First of all, for those who are wondering how in the world Alysia and I are able to compose and send these emails at such a time - it is a very good question, and I'm not sure myself. Those who know us are aware of how much we love our sweet Tehila, and we are numb, and our hearts are in shambles. Clearly, we are drawing our strength from Tehila.
I was speaking a few days ago with a dear family friend, Dr. Jonathan Leiderman, who is an anesthesiologist at North Shore LIJ hospital, and recalled the time 16 years ago, when he assisted us with Tehila while she was critically ill. Our beloved friend, Chaim Kaminetzky, zt"l, who was intimately involved in helping Tehila every step of the way, was very concerned about the treatment Tehila was receiving. Jonathan didn't like what he was hearing from Chaim, and strongly advocated that we transfer Tehila to his hospital, where he promised they would take proper care of her. We followed his advice, and as per Jonathan's assurances, he and his colleagues literally saved Tehila's life - for which we will be forever grateful to him.
As a veteran anesthesiologist in their Children's Hospital, Jonathan has treated many special needs children over the years who have had a range of physical and developmental disabilities. Jonathan told me that he marveled at what he has observed in the parents of these special children. He said that some of them are extremely difficult to manage, behaviorally and otherwise, but yet, their parents hug them and kiss them almost non-stop - which is something that has profoundly touched him.
Since Alysia and I are blessed to be in this "special parents" category, I believe that I can explain this phenomenon. I think everyone would agree that there is no love in the world which is more pure and unconditional than that of a parent for a child. For one's own child, a normal, good parent will sacrifice virtually anything, and will always unquestioningly put their child first. During a child's early years, a child is completely dependent upon his/her parents for everything, and in turn, the parent provides it unconditionally, while expecting nothing in return.
As a children's personalities develop, the role of the parents as protectors and providers gradually diminishes, and the relationship evolves. Though the parental unconditional love always remain a factor in the relationship, it does not maintain the pure, unadulterated quality that was present during the very early years. In the case of special child, however, the unconditional aspect of the relationship maintains that initial, pristine purity.
We believe that each one of these children bring with them a special mission, a special "tikkun" that their very presence accomplishes in this world. When our Tehila was born, the doctors projected the most dire predictions upon her future. They said she would not be able to see or hear, and at best would lie motionless on a bed if she would indeed survive. Clearly, Tehila's first mission was to make a bold statement that G-d makes these decisions, not doctors.
For those who have not been privileged to meet Tehila, she is a little pitzel - barely four feet tall, and can walk only with assistance. However, contrary to the predictions of doom, she sees and hears, and has a gleam in her eyes that can light up an entire room. She was born with a paresis on one side of her face, so she smiles with only half of her face, and it is just about the cutest thing you will ever see. She communicates with words, asks for her favorite toys and videos, and if you are anywhere in her vicinity, she grabs your hand and makes you participate. Shabbos is the most special with Tehila. From beginning to end, Tehila has her own special parts in everything - from Shalom Aleichem, to kiddush, the motzee, z'mirot, birkat hamazon, havdalah, etc, her role is essential, and she makes it extra special.
But there is really much more when getting to the essence of who this little girl is, and in trying to understand why she has had such a profound impact upon us - not only upon the Heller family, but upon thousands of others.
For starters, Tehila is a story of one miraculous recovery after another - perhaps too many to count. She consistently defies medical logic, and makes the point again and again that the final decisions lie only with Hashem.
Tehila has also been an inspiration to her brothers. Yehuda, whose early life left him so familiar with medical facilities, that he celebrated his 3rd, 4th, 5th, and 6th birthday parties in hospitals. Yehuda is now a counselor at Camp HASC (Hebrew Academy for Special Children), but certainly needed no time to acclimate to an environment filled with special children. Because he was blessed with a sister like Tehila, he literally grew up around children with the worst disabilities and deformities, he sees right through to the child within, un-phased by the "cover." We are so proud of him, as we are of all the young counselors at HASC, who incidentally, are highly represented from our Elizabeth/Hillside community.
I believe the following story is a good illustration of Tehila's influence on the world around her.
In 1998, I received a call from our dear friend, David Mandel, Director of OHEL Children and Family Services, in which he invited me to perform in that year's OHEL concert, to take place at the Madison Square Garden Theater. I accepted the honor, and resolved to write a special song in honor of my Tehila, who was still in a medical facility at the time. Under normal circumstances, it takes me weeks to write a song, and many never get finished. However, this song was finished within a half hour, as if it had fallen down upon me from heaven - fully written and in its final form. As many of you know, this song was "My Little One."
I called my ole buddy Sheya Mendlowitz, the concert producer, and told him I had a song for the show. I played it for him on the phone, and he was extremely taken by it - he told me that there is no time to waste, and must get over to Yisroel Lamm, the concert conductor/arranger. Yisroel who is a dear friend and "legend" in Jewish Music, was very emotionally affected by the song, and worked his heart out to write for it what I think is one of the his finest orchestrations. Sheya Mendlowitz, who does not know the meaning of a "small" production, had assembled a 60 piece orchestra of the finest musicians in the tri-state area, and had a Mobile Recording Studio on 33rd street and a cinema quality video crew on hand to record the event. On top of that, Sheya ordered a 9 foot Steinway piano that they wheeled in especially for me. When I sat down to perform the song for the 6,000 who were with us that night, I felt that I was but a small part of something very special - something that went well beyond me.
A few weeks later, Sheya was in the studio finalizing the mix, and he gave me a call. "Ira," he said, "you must come down here and look at this, you have to see it to believe it." When I saw the video, I finally understood what was going on. There was most certainly a conductor in the background coordinating that special moment at Madison Square Garden that night, and it was neither me nor Yisroel Lamm. Rather, it was a little girl in a crib in a medical facility in Southern New Jersey who inspired and directed it all - and I absolutely believe this to be true
Since "My Little One" came out, more than 15 years ago, I have heard time and again from people how this song comforted them during difficult times, and gave much needed inspiration. I have been most appreciative to those who have given me credit, but in truth, I defer all credit to a sweet little girl in a hospital bed that orchestrated it all. There is clearly much more than meets the eye here, and I say this honestly, not with false modesty.
So from where comes this "strength" to write all this? Clearly, from an incredible little neshoma, delivered to us in the form of a sweet little girl 17 years ago. Since Tehila's birth, she has continued to move and inspire all those around her. This latest, heart wrenching nisayon is no different, and as much as we hurt, we are truly inspired by the response of everyone who has rallied around her and around us. B'ezrat Hashem, it will continue to arouse the Rachmei Hashem, and our Tehila will continue to get better.
Thanking you again for joining us with all of your heartfelt thoughts and prayers. We will continue to send updates, and with Hashem's help, each one will contain continued miracles and only b'sorot tovot.
Update: ...just received news from the hospital, Tehila just independently lifted her her arms out to stretch - this is huge progress!
Again, please remember to have Tehila in mind tomorrow, as she goes for surgery early in the morning. We will send an email when she goes in, and will send another when the surgery is done, be"H, successfully.
Love,
Ira & AlysiaPS - Alysia suggested that I post the YouTube link for "My Little One:" http://www.youtube.com/watch?v=O6mx3J1PwPI
Monday 8/12/13 7:50am
Tehila is scheduled for surgery at 8:30am. Please have Neshama Tehila bat Chana in mind.
We will update again when Tehila goes in for surgery, and then again when all, be"H, is successfully done.
Monday 8/12/13 7:50am
Tehila is scheduled for surgery at 8:30am. Please have Neshama Tehila bat Chana in mind.
Alysia adds that while I was in shul this morning, they took blood from Tehila, and she tried to pull her arm away. As much as we hate for her to have pain, reaction to pain is a very important sign of neurological recovery.
We will update again when Tehila goes in for surgery, and then again when all, be"H, is successfully completed. In the meantime, she had a good night, b"H, and is resting comfortably.
8/12/13 - 9:10am
Tehila went into surgery 10 minutes ago, we returned to her room, and are awaiting her return. Please continue tefilot for her, and will update again when, be"H, the surgery has been successfully completed.
8/12/13 - 10:10am
Surgery is over, and Tehila was brought back to the room 20 minutes ago. All went smoothly, b"H, and she is settling in. The nurse who is working on her now just said that he has never seen such a procedure go so fast. I would venture to say that clearly, she was well protected by an army of mal'achim who were summoned by the abundance of tefilot on her behalf.
We thank everyone who joined with us in tefilah this morning, and be"H, we will continue to see miracles from our little miracle girl!
With love,
Alysia & Ira, and the Heller familyWed - 8/14/13
Tehila had a restful day after her surgery, and has been recovering very nicely,b"H.
The settings on her ventilator have been lowered, giving her significantly less breath support in order to encourage her to breath more on her own. Tehila has been filling in with her breathing initiatives, and has been tolerating the new settings since they were set yesterday morning. This is a very good sign!
Alysia and I would once again like to acknowledge all the beautiful emails we have received. We are extremely touched by all the words of encouragement, and genuinely inspired by all the tefilot (prayers) being said on Tehila's behalf. In our neighborhood, people have been consistently gathering every evening at 9pm to collectively recite the entire book of Tehillim (Psalms). To our dear friends and neighbors, we truly cannot thank you enough.
We have received a number of emails from Tehila's teachers and therapists from her school (the "Lakeview" School, in Edison, NJ). They all speak of how much they love Tehila, and how much all the staff and her fellow students miss her and keep asking for her. Admittedly, my heart sits in my throat as I read these messages.
Yesterday morning, Alysia told me something which has left me amazed. She said that she had spoken with our case worker for our Insurance Company, United Health Care (UHC), who had to be notified of several changes in Tehila's circumstances. Thankfully, the case worker was very helpful, and all is in order - but there was much more. Our case worker had emailed me last week, requesting that I keep her updated on Tehila's progress, which I did by putting her on the list for these email updates. Perhaps they contained considerably more information than she was initially looking for, but apparently, she began sharing them with her colleagues at UHC. The case worker emotionally described to Alysia how her fellow staff at UHC have enthusiastically come together in prayer on Tehila's behalf, and eagerly await every bit of news regarding Tehila's continued miraculous recovery. The following is a quote from an email I received from our UHC Case Worker today:
"As I mentioned to Mrs. Heller yesterday, I feel that it is a true blessing that I have had the opportunity to meet your family, and through you, experience the miracle of Tehila."
Wow - enough said.8/14/13 - Wed afternoon
Tehila had an EEG today. I just spoke to Alysia a little while ago, and the results were not showing the brain activity that we had hoped for. Concerned that Alysia would despair, I immediately reminded her that Tehila does things her own way, and to please not pay any attention to the results of the EEG.
As soon as I hung up the phone, despite my own bold declarations, it was me who started to despair. Just as my heart started to sink, the house phone rang. I was in no mood to speak, so I let the machine answer, it was my very close friend of many years, Rabbi Shamai Wahrman (now a Rebbe in Yeshivat Lev Hatorah). Rather than pick up the phone, I let him speak his message. He had been away for a while, and apologized that he had not seen any of my email messages until today. He said he had read them all, and immediately conveyed a bracha (blessing) that Tehila will not only have a full recovery, but will come back even better than before!
Clearly, there are no coincidences.
Will look forward to bring only the best of news about our miracle girl.
8/18/13
Tehila continues to be stable, b"H, and as of now, plans are in place for transfer to a pediatric rehabilitation facility in Voorhees, NJ, this coming Tuesday, 8/20.
Over Shabbos, Tehila was intermittently running a fever, the cause for which has still not yet been conclusively determined. She is being treated with anti-biotics, and be"H all will remain under control and transfer will take place as scheduled.
Until this morning, the positive news remained the same - Tehila is still holding our hands, and showed an appropriate pain response when they took blood from her on Friday.
When Tehila and I say "Modeh Ani" together every morning, she reaches up to hug me. Clearly, she hasn't been able to do this since the events of 7/30. However, on Shabbos morning, I went to sing Modeh Ani with her before heading to shul, she lifted her shoulder, seemingly trying to lift her arm. Of course, it may be wishful thinking on my part, but is certainly plausible that she is trying to give me my hug.
This morning, Alysia and I were stretching her, so as to prevent her limbs from getting too tight from lying in the same position for so long, and we both noticed some movement in her mouth - for the first time.
These are all very positive signs. They are small signs, but we will look forward to celebrating every step forward, however small, together.
That is our "medical" update for now, but Alysia and I just wanted to add just a few thoughts.With Tehila's return to the Voorhees Pediatric Facility this week, be"H, we are preparing ourselves for a return to what we thought was a bygone era, in which one of our children was 100 miles from home in a medical facility. Tehila was in Voorhees for almost 3 years of her life, from the time she was one year until age four. Tehila intially came to Voorhees after multiple hospitalizations, which left her with significant lung damage, and ventilator dependent. It was the exceptional care of the chief Pulmonologist at Voorhees, Dr. Caitlin Papastamelos, who ultimately weaned Tehila off of the ventilator, and stabilized her to the point in which she was able to be discharged from the facility, and come home. Dr. Papastamelos (affectionately known as "Dr. Caitlin") is still in charge of Tehila's respiratory care to this day, and it is much to her credit that Tehila was able to come this far.
When Tehila was first admitted to Voorhees so many years ago, her prognosis was very guarded, given her very fragile medical condition. Thoughts of taking her home to live with us at the time seemed like an elusive dream, given the circumstances. We never gave up, and ultimately, were able to make the necessary medical arrangements, and she was discharged from Voorhees when she was 4 years old. The day Tehila left Voorhees, she received a very emotional send-off from the entire Voorhees staff who truly came to love her.
With our return to Voorhees this week, 13 years after Tehila's discharge, we intend to set up an array of photos on her wall, spanning her 13 beautiful years at home with us - something which many naysayers had said could never happen. We would also like the wonderful Voorhees Staff see how their dedication was so instrumental in helping make this possible for our little girl, our entire family, and everyone who has been blessed to have Tehila in their lives.
Alysia and I often reflect upon the last 18 years, since we first found out - even before Tehila was born - that we were about to have a child who would face difficult challenges. If given the choice, would we voluntarily choose this? In truth, I can't believe that any sane parents would ever choose to enter into such a situation, nor wish it upon anyone else. However, were we to be asked now, looking back, if all the tribulations were worth it, we would give a resounding YES, we would absolutely do it all again. We were given a privilege to be the guardians of a priceless treasure, and wouldn't give it up for anything.I recall receiving a phone call, shortly before the Ohel Concert 5758, where I first introduced the song 'My Little One.' The person had heard about my intention to perform a song about my special needs daughter, and strongly suggested that it may be detrimental to my family to be so open about having a child like Tehila. I was polite, but strident in my reply that for my family, Tehila as a badge of honor which we wear with only the greatest pride.
Tehila's presence in our lives has benefitted our family in ways we could never have anticipated. For example, we can see now, in retrospect, how it has benefitted us in the upbringing of our four wonderful boys.
Our oldest son, Yehuda, who is the only one with actual memory of a time that Tehila did not live at home with us, got a full dose of what it means for a family to have a child living in a hospital. Aside from having to endure the flux of moving back and forth from hospital visits, he also spent extensive time in Tehila's pediatric facility, and in the process, came into close contact with an array of severely ill and deformed children.
A very telling story, is regarding a young boy who was hospitalized at Tehila's facility. At Voorhees, they treat children with a wide variety of illnesses, disorders and physical deformities. When Tehila was admitted there for the first time, among the physically deformed children was one boy whose deformities were so extensive and pronounced, that it was extremely difficult just to look at him. Alysia admits that the first time she saw this boy, she was so emotionally affected that she had to retreat into an empty room and cry. She was also very concerned about Yehuda, as he was only 4 years old at the time, and feared that should Yehuda encounter this boy, he would become very frightened. During the first weeks that Tehila was in Voorhees, Alysia did everything possible to avoid crossing paths with this boy, particular when she had Yehuda with her.
During one visit to Voorhees, Alysia took Tehila and Yehuda out to a playground located in an atrium in the middle of the facility. They had been there only a few minutes, and sure enough, out came this boy, together with one of his therapists. Now unable to avoid the inevitable encounter, Yehuda saw the boy, and immediately turned to Alysia and asked, "what's wrong with that boy?" Flustered herself, Alysia managed to find the right words, "there's really nothing wrong with him. He may look different on the outside, but on the inside, he's a little boy just like you." Alysia admits that she was speaking as much to herself as she was to Yehuda.
During a visit the following week, Alysia and Yehuda were together in the playground again, and sure enough, the boy appeared again. Yehuda looked at the boy, then looked up at Alysia and asked, "he looks different on the outside, but on the inside, he's a little boy just like me, right?" Alysia agreed. Yehuda then looked up and asked, "is it alright if I ask him to play with me?" And they did, many times, as Yehuda did with many of the other children at Voorhees as well.
About 3 years later, after Tehila had already come home to live, Alysia joined Tehila on a day trip when she was attending school at Children's Specialized Hospital in Fanwood, NJ. Alysia felt it an important enough experience for Yehuda to take him out of school for a day so he could participate. In the park that they were visiting, they had a life sized maze that the children could walk through. At about the same time that Yehuda entered this maze, there was a little boy with Downs syndrome who walked into the maze at the same time. Alysia set herself up at the exit to the maze to wait for Yehuda, and next to her, waiting as well, was the mother of this little boy with Down's Syndrome.
After waiting a little while, they both realized that the boys were delayed, and began getting a bit concerned. A short time later, Yehuda emerged accompanying this little boy, looking rather protective of him. When Alysia asked Yehuda what had happened, he explained that there was a small gang of boys in the maze who had cornered the little Downs boy and were scaring him and making fun of him. Yehuda said he got between the gang and the little boy and asked them why they were doing that to the boy. When they clearly had no answer, Yehuda then told them that "he may look different on the outside, but on the inside, he is just like you." The fact that Yehuda has always been about a head taller than other kids his age was probably persuasive in backing them off, but I'm also confident that on some level, Yehuda had schooled them in human sensitivity, a lesson which hopefully stayed with them.
Our 3 younger boys, twins Aharon & Moshe, and our youngest, Yosef, also adore Tehila. They play with her, sing with her, protect her, and have never even a thought of a complaint about the accommodations we must make for her, or the added attention she requires. Our family celebrates Tehila, and our boys are all full participants. Were someone to ask them about their feelings regarding the difficulty of have a special needs sibling, I'm fairly sure they wouldn't even understand the question.
The added dimension that Tehila has brought into our lives is not limited to our boys. Tehila brightens up our entire home - she is the star of our family, our special gift, and in many ways, our teacher. Baruch Hashem, we have found the strength to endure whatever challenges we have had to face, and we are exceedingly blessed for having embraced them. Alysia and I still frequently recall how we had weathered the most dire of circumstances, and defied the odds to get our precious Tehila home. Having come so close to losing her so many times, we have learned to cherish every day with her. Having her at home, as a member of our family, has been a dream come true.
Until Tuesday, July 30, 2013, when our world came crashing down.
Since enduring that frightful day, Alysia and I have been steadfast in our resolve that the same Hashem that gave us our Tehila, and carried us through our worst days, is the same Hashem who is watching over us now.
Clearly, the pain of seeing this happen to our sweet little girl is indescribable, and we would be untruthful if we said that we didn't have our very difficult moments. However, if there is one crucial lesson we have learned from all of our painful experience, is that no matter what happens, we must thoroughly trust Hashem, and never fall into despair.
Tehila's incredible life personifies the concept of me'afeilah le'orah (from darkness to light) many times over. Clearly, we cannot see into the future, but nevertheless, we move forward in the firm belief that this latest heartbreak is but another piece of Tehila's miraculous and inspiring story. Since those early years, Tehila's life has touched so many people, and so many now are praying for her, learning Torah, and doing chesed (good deeds) on her behalf. Hence, we feel very confident, b'ezrat Hashem, that we will all go me'afeilah le'orah together.
The Tehillim in our neighborhood on Tehila's behalf has continued, and we continue to hear from people all the special things that are being done on behalf of Tehila's refuah shlemah. Last night, our son Yehuda invited a house full of friends to our home for a special Melaveh Malkah (a joyful celebration at the conclusion of the Sabbath). Together, the boys enthusiastically dedicated songs, prayers, and words of Torah in honor of a refuah shlemah (full recovery) for Yehuda's beloved sister, Neshama Tehila bat Chana. Below is a great photo from last night's event, and we thank all the boys who participated.
8/20/13
Tehila remains stable, b"H. She still shows small incremental signs of awareness, and appropriate reactions to discomfort.
Over the last few days, it became apparent that Tehila was becoming agitated whenever pressure was put on her right arm. A sonogram today revealed that she has an extensive blood clot in her arm, where she previously had an intravenous line. It is now being treated with medication, and being monitored closely.
Due to this latest complication, Tehila's transfer to the rehab facility has been postponed, and the new projected day for transfer will be this coming Monday.
We will update again soon.
8/22/13
We made a very important "discovery" over the course of this week.
In coordination with Tehila's Pulmonologist, Dr. Caitlin, it was decided that Tehila's ventilator would be switched to the portable model she will be using when she arrives at Voorhees. Earlier this week, Tehila was switched to portable ventilator, and the settings ventilator were set to exactly match the settings on the current ventilator.
At first, it seemed like Tehila was tolerating the new ventilator well, but as the day progressed, Tehila's blood pressures started spiking, Our experience of the last few weeks has taught us that Tehila blood pressure spikes seem not to be due to neurological dysfunction (thankfully), but rather, have been a reaction to discomfort by Tehila.
In response to Tehila's elevated blood pressure, various attempts were made to bring it back to normal using sedatives, positional adjustments, etc, but nothing seemed to be working. Finally Alysia suggested putting Tehila back on the previous ventilator, to see if Tehila's elevated blood pressure was related to her discomfort with the new ventilator. Tehila was put back on the old ventilator, and within 20 minutes, her blood pressure returned to normal. Clearly, some tweaking of the portable ventilator settings is going to be necessary, and it is currently being addressed.
This event served to demonstrate that Tehila, who is currently in a state in which she is unable to directly communicate with us, has found a way to convey her discomfort - via her blood pressure. We are very grateful to have discovered this, as at least now we know that Tehila has a way to communicate with us when she is in distress.
On the topic of "gratitude," Alysia and I had a very important conversation on this topic over lunch in the hospital lounge this past Shabbat. I have been meaning to share some of it in these updates, but haven't yet had the opportunity to put it into words. I hope to have the opportunity to do so shortly.
In the meantime, we thank everyone who has conveyed heartfelt words of encouragement to us. Naturally, it gives us a very good feeling when people say they have drawn inspiration from us (more accurately, Tehila) during this ordeal. People have also commented to us, saying "we don't know how you do it." We know that people mean this to be a compliment, and we appreciate it, but we are being honestly believe that we are doing what all good parents do for their children.
It is true that our situation diverts from the natural order, and the majority of parents do not have to confront circumstances similar to ours. Generally however, the tribulations of life do not bypass any of us, and we will inevitably confront the challenge of illness and the death of loved ones. Be that as it may, our experience has taught us that to live in fear is inconsistent with the principle of "Emunah" (Faith), as true Emunah and fear are mutually exclusive. In fact, there was a song with this theme that became very popular in Israel a few years ago, called "mi shema'amin eino mefached." which means "One who truly believes does not fear." So when we have our "moments," and we certainly do, we remind ourselves - sometimes many times a day: "Mi shema'amin, eino mefached"...
As we mentioned earlier, it gives us a very special feeling when people tell us that they have drawn inspiration from us, as truthfully, this is what we hope to accomplish in putting so much energy into writing these updates. But please know that the inspiration goes two ways. Every time we hear of something special that has been done on behalf of Tehila's refuah shlemah, it is we who are inspired. There are so many wonderful things that we hear, and it would be impossible to recount them all. However, I would like to mention a couple this morning.
First, we were very touched by something we heard about a wonderful young man, whose name is Yehonatan Ness. Yehonatan just recently became a Bar Mitzvah, and of his own initiative, decided to take a sizeable amount of his Bar Mitzvah money, and make a donation to Sinai Schools in honor of a refuah shlemah for Neshama Tehila bat Chana. We are so grateful to Yehonatan for this beautiful gesture that brings tremendous z'chut to our Tehila, and we are extremely proud of him!We also feel extremely privileged that HaRav Lazer Brody, the inspirational author and translator of the very popular "Garden" Book series by HaRav Shalom Arush, has featured some very beautiful wishes to Tehila on his very popular website "Lazer Beams." Rabbi Brody is a very special individual whose warm words of wisdom and insight has brought thousands of people closer to Hashem. I very highly recommend regular visits to Rabbi Brody's Website, located at http://lazerbrody.typepad.com/lazer_beams/.
8/23/13
After a couple of days of trying to transition Tehila to the portable ventilator, we have had some ups and downs. We had to transfer her back to her original ventilator again last night, after her blood pressure began rising again. After another consultation with Dr. Caitlin, the settings were adjusted again this morning, and so far, b"H, she is tolerating the portable vent quite well.
As things stand now, transfer to Voorhees is still on schedule for Monday.
In the previous update, I alluded to a conversation I had last Shabbat with Alysia about "gratitude." We were contemplating how drastically our lives had changed since Tehila got sick a little more than three weeks ago. However, I pointed out that it is a well established principle, that in order for one to properly daven to Hashem (pray to G-d), gratitude is absolutely essential - even at a time like this. It may at first seem counter-intuitive, but when looking at the larger picture, it truly makes sense.
In the order of prayer we typically praise Hashem before making a request. This seems a bit puzzling, as are we proposing that Hashem somehow needs or benefits from our praise? The simple answer is, praise is important not because Hashem needs our praise, but because we need to praise Him. Why so? Because praise is an expression of gratitude - and through gratitude, we thus elevate ourselves to a place in which we are in a better position to pose a request before Hashem.
To use a simple analogy, imagine a child who is grateful for everything given to him by his parent. Therefore, when this child has a request, the parent will be much more inclined to grant it, not because the parent has been "appeased," but because the parent has genuine pleasure in granting a request to a child who is truly appreciative. Not so with the ungrateful child, who is like a bottomless pit. It matters not how much you give him, it is never enough, and the more you give, the more he demands.
The Pesach (Passover) Hymn "Dayenu" is very instructive regarding the concept of gratitude. We chant line after line about the kindnesses of Hashem, and after each one declare "Dayenu." The message being, that if we received only up to that point and no more, we would still have been abundantly grateful, and it is by virtue of our gratitude that we proceed to the next step.So what can we now say about gratitude? Can we truly be grateful about anything, as we sit beside our precious daughter, who is lying unconscious in an Intensive Care Unit? In our discussion about gratitude this past Shabbat, Alysia and I decided to enumerate some of the things for which - even at a time like this - we are abundantly grateful. We began with our birth - Hashem gave us life - right there we could stop and say, "Dayenu!" But there is certainly much more, Hashem blessed us both with wonderful parents, a childhood in which we lacked for nothing, we were given the best education, and the list went on - 20 minutes passed, and we hadn't even gotten past our childhoods. We could easily have kept it going for the entire day, and still not covered everything.
This little exercise highlighted the truth contained in the special prayer we say each Sabbath morning, "Nishmat kol chai." In Nishmat, we declare that even if we were to utter all the praise spanning every corner of the Earth, it still would be insufficient to thank Hashem for even a tiny fraction of the kindness that He has bestowed upon us.
In the book "She'arav Be'Todah, by the very popular author, Rav Shalom Arush, (or "Garden of Gratitude" translated by our wonderful friend Rav Lazer Brody), Rav Arush explains with exceptional clarity why gratitude is so essential, even in the face of the most difficult things in life. Difficult times deliver to us new opportunities with which to draw ourselves closer to Hashem, and whether we will grasp the opportunity is our choice.
The Talmud famously states that a person who reaches into his pocket for a coin, and ends up removing a smaller denomination than that which he originally intended, is actually being "punished" for some wrongdoing. As strange as this may seem, this contains a much larger message. That being, every tribulation in life, larger or small, contains a new opportunity for personal growth, and by seeing the ultimate good in every misfortune, we may then draw ourselves closer to Hashem. However, if we choose to respond with anger or sadness, we have thus missed a valuable opportunity, which may return to us in the form of more difficult tribulations, until it finally gets our attention.
When I was first exposed to this concept, I was very enthusiastic about spreading this "spiritual wealth." I was once giving a little "discourse" on this concept to a passenger in my car while driving on the highway (a captive audience), and just as I got to the part about thanking Hashem for annoyances instead of getting upset, some crazy driver cut me off and nearly ran me off the road. My immediate reaction was to exclaim "YOU STUP---," but somehow managed to catch myself, and finished with "--PENDOUS PERSON..." and then proceeded to thank Hashem for the opportunity. What can I say, it's a process... :-)
So if someone were to ask Alysia and me - as we face these very difficult circumstances - can we HONESTLY say that we are grateful, even for this? Our honest answer is yes. Clearly, having to watch this happen to our sweet little girl has torn out our hearts, and has caused us unspeakable pain. But we ask ourselves, what is the response that most benefits Tehila? Would it help her if we drowned ourselves in sadness? Became angry? Collapsed in despair?
On the contrary, we cling mightily to our Emunah that everything Hashem does is intrinsically good, and for Hashem, we have only gratitude. Having fully embraced this choice, we have already begun to see the "tov" (good) in the midst of the darkness. If we were to succumb to anger, sadness, or despair, G-d forbid, we would be doing nothing to help our Tehila, and worse, could lock ourselves deeper into the darkness, and squander an important opportunity.
It has been only a few weeks, but during this short time, a consciousness has been raised - because of Tehila - that is almost unbelievable. How we respond is our choice, and we believe we have chosen the path that paves the best possible path to Tehila's recovery, be"H, which is the path of gratitude.
Sending love to all, and wishing a Shabbat Shalom umevorach!
Ira & Alysia
8/26/13
Tehila's transfer to the rehab facility, previously scheduled for Today, was postponed to this Wednesday. As of now, all seems to be in place for a Wednesday transfer.
Alysia was in the hospital with Tehila over Shabbos, and I was home with the boys and my mother-in-law (Erika Sauerhoff). It was the first Shabbos with all the boys home since Tehila got sick, and we did our best to have simchat Shabbat under the circumstances. Normally, Tehila would have had all her special parts at the Shabbos table, beginning with Shalom Aleichem until benching (Grace after meals). We all took turns doing Tehila's various parts, and even added an extra part in the merit of a refuah shlemah for her. The piece was long, but we all said it together, and the boys managed to get through the whole thing without fighting once (another Tehila inspired miracle!).
After Shabbos was over, I got the latest from Alysia in the hospital. Things were very stable when I left on Friday, and was surprised to hear that Tehila had been unstable all Friday night. Her blood pressure had been widely fluctuating, and took all night until things finally seemed to stabilize. Clearly, it was not what I had hoped to hear.
I drove to the hospital with Yehuda after Shabbos, feeling a bit discouraged. While on the way, Yehuda received a call from a friend who had attended the Melaveh Malkah Yehuda had organized in our home, in honor of a refuah shlemah for Tehila. After Yehuda hung up, he said that his friend had just told him that he was so moved by last week's event, it was actually life-changing for him. Having been a bit subdued by the earlier news, this lifted my lagging spirits a bit, as it reminded me of how much of an inspiration Tehila continues to be to so many people.
I relieved Alysia in the hospital, who was clearly exhausted from having been up the entire previous night. Now alone with Tehila, I put my head down next to her on the bed and cried for a while. Before retiring to my hospital chair, I checked my emails and found some very welcome words of encouragement, in fact, some of them came from people who are facing some very difficult situations of their own, and told me of how much strength they are drawing from our courageous little girl. I gained back some of my "stiff upper lip," said Sh'ma with Tehila, and went to sleep. Tehila had a very stable night, and I went to shul on Sunday morning feeling a bit better about things.Upon arriving back in the hospital from shul, Alysia called me to tell me about a phone conversation she had with Tehila's neurologist. The neurologist had reviewed Tehila's EEG from last week, and in her assessment, there was no optimism to be found in the results of the EEG, nor in Tehila's future prospects for recovery. Now, I felt my spirits sinking again, and the roller coaster ride continued.
How is a person supposed to cope with all this?
Honestly, we are human beings, not machines. We are suffering terribly through this, and we are simply trying to figure things out as we go. Even the very difficult health issues Tehila had confronted early in her life did not prepare us for anything like this. Alysia and I have worked hard through this ordeal to help each other maintain perspective, and in the aggregate, we are of one mind regarding the nature of our role as Tehila's parents. We embrace our role as her advocates and protectors, and we love her unconditionally, just as we always have, and just as she is. We have no idea what the future might bring, but the bottom line is, we know we must trust Hashem.
So, in seeking some guidance, I again thought about Tehila's favorite Pesach song, "Dayenu.": The song begins, "If Hashem had taken us out of Egypt, but had not established the Tribes of Israel, Dayenu (it would have been sufficient)." The song then proceeds, step by step, from the liberation from Egypt, through the ultimate building of the Holy Temple in Jerusalem. But one might rightfully ask, would it truly have been sufficient for us if Hashem had not taken us through all the steps to our ultimate goal?
Surely, every step was essential, but the point is that it was only through Israel's complete trust in Hashem that they were able to proceed from one step to the next. The fact that they were able to unequivocally declare "Dayenu" at any stage in the process was evidence of this trust, and thus opened the door to Hashem's next blessing. However, during those times that the trust was deficient, as during the sin of the Golden Calf and the sin of spies, disaster ensued. Those who had conditioned their faith on their own projection of what they felt Hashem's next step should be, were led down a path of destruction.
So were Alysia and to choose our most desired outcome, our precious girl would have a full recovery, and we would scoop her up and take her back home to resume our happy life. However, we also understand that for our trust in Hashem to be complete, we must be fully willing to accept that the outcome that Hashem deems to be best may sometimes differ from our own. But we also know that only through complete trust in Hashem, can we open the door to His future blessings. So we say "Dayenu," and trust that all is good, and will be good.
This is all very simple to say, but these are our choices, and we are living them. We are grateful for the opportunity to share it with so many people who care - and we thank you all so much for being there for us.
With love to all,
Alysia, Ira, & Family8/30/13
We meant to update sooner, as we know many people were anxious to hear the news that Tehila had transitioned smoothly to the new facility. Thank you for bearing with us, between the transport and getting Tehila resettled, the last two days have been rather hectic, but we are pleased to report that Tehila arrived safely at the Voorhees Pediatric Facility on Wednesday at approximately 1pm, and has settled in nicely, Baruch Hashem.
Alysia had a meeting with the Voorhees multi-disciplinary staff shortly after their arrival (I was conferenced in by phone), and we are comforted by the fact that Tehila is in good hands with Dr. Caitlin and the wonderful people at the Voorhees Pediatric Facility. Many of the staff members have been at Voorhees for many years, and remember and love Tehila. They all recall Tehila's loveable personality, and though it is hard for them to see her return in this state, they are all determined to do everything within their power to help her.
Having made this transition, Alysia and I feel very strongly that certain words of Hakarat Hatov (gratitude) must be expressed. I tried to write yesterday, but realized that an emotional exhaustion had set in, and simply couldn't do it. Living with Tehila in the intensive care unit was like running an extended sprint, until the "race" finally ended on Wednesday with Tehila's safe arrival at Voorhees. I guess reserve was running low.
I was back in Hillside for mincha/maariv last night, and after davening was over, signaled to Rabbi Schwartz that I needed a moment to speak. Trying to explain what I was feeling, I told the Rabbi that having this happen to my Tehila was like being punched repeatedly in my gut, and seeing her like this makes me re-experience it over and over again. Pointing to the Rabbi's office door, I told him that this "fighter" needs a breather, and said that I hoped he had a stool and squirt bottle in there for me. We went in, and as soon as the door closed, Rabbi Schwartz accommodated me by making a big "ding" sound to signal the end of the round. We took a few minutes, and he gave me some much need words of encouragement.
I tell this little story only to emphasize that, at least for me, having trust in Hashem does not simply make the pain go away. What is does do, however, is help us get through those difficult moments when we think our strength is gone; we manage to find the strength to go out and fight another round, knowing that Hashem is there for us, and will see us through.
So we move to the next stage, and we are grateful to so many who helped along the way. We must thank our wonderful moms, Grandma Erika and Grandma Esther, who have stepped in to help us whenever we needed them. We feel enormous gratitude to the staff of Tehila's school, the Lakeview school, who were there to help Tehila, administering life support until the emergency team arrived and transported her to the JFK Medical Center. We thank the wonderful doctors at St Peters Hospital, Dr. The, Dr. Christoff, Dr. Jonna, and Dr. Chalikonda, as well as the entire St Peters PICU staff, who helped save Tehila and get her stabilized. We thank Dr. Caitlin and the Voorhees Pediatric Facility staff, who welcomed Tehila with open arms, and b'ezrat Hashem, will now help her on the road to recovery.
We are so grateful to our neighbors in the Hillside/Elizabeth community, our shul Rabbi Jonathan Schwartz and fellow members of Adath Israel, who have done everything possible to help us during this time. We extend special gratitude to those who have gathered every night in the Kontente, Shulman, & Lochak homes to recite Tehillim on Tehila's behalf. We thank all those who participated in our neighborhood bikur cholim, delivering food to our home and to the hospital, in addition to any other help they could extend while Alysia and I were in the hospital with Tehila.
St. Peters Hospital, which is located in New Brunswick, is located right next to the wonderful Highland Park Jewish community. We extend our deepest gratitude to Rabbi Eli Kaufman of Highland Park's Congregation Ohav Emeth, who, along with our Highland Park friends extended themselves to help us in every way possible. The Highland Park bikur cholim was in touch with us every day, making sure that Alysia and I had food, or anything else we needed. Being near Highland Park also afforded us another special blessing, as it gave us a month of quality time with two very special people to whom we feel very close, Rabbi Eliezer and Aviva Kaminetzky.
Our gratitude also extends well beyond as well, as we hear new information every day about people from around the world who have been thinking about and praying for Tehila. We are extremely touched by the enormous outpouring on her behalf.
When we left St. Peter's hospital on Wednesday, one couldn't help but feel that Tehila was being accompanied by an army of malachim (angels), that had been summoned to protect her on her journey. Now we move to the next stage...
We would like to add a request that people take a moment to have in mind Tzvi Shmuel ben Chana Rachel, a beloved member of our community who is having cardiac bypass surgery today.
Please also have in mind a heroic young woman, Feige Perel bat Rachel Malkah, and we request that Hashem give her doctors the wisdom to find a way to help her control and manage a very debilitating illness.
Wishing everyone a Shabbat Shalom umevorach!
With love from the Heller family
9/4/13
We spent most of the last few days traveling back and forth from Voorhees, and were unable to find a moment to update on Tehila's progress. However, this time right before Rosh Hashana is a very auspicious time, and we would like to get one out there.
Tehila is gradually settling into her new place at the Voorhees Pediatric Facility. We are still seeing more staff members who remember Tehila from her first hospitalization there. It brought back many memories, and clearly, it is accompanied by a bittersweet feeling, given the seriousness of her current circumstances. Nevertheless, we have done everything in our power to make sure that everyone is on the same page regarding our intention to do everything possible to give Tehila the best chance to recover. In the meantime, Tehila looks comfortable, and is being well monitored and cared for, b"H.
We just wanted to share one very appropriate, pre Yom Tov thought.
When a person, or family, finds himself or themselves in a dire, life-death situation as ours - and most everyone does at some point in their lives - how does one stay "optimistic?" Specifically, I'm sure people must wonder if we have asked ourselves the difficult question, "what if Tehila does not recover," chas v'shalom (G-d forbid).
Thankfully, it has been many years since we were last in this kind of situation (when Tehila was a baby), and once the circumstance passes, one conveniently forgets the feeling. To illustrate, I recall when we were in the hospital for Tehila's back surgery 2 years ago, there was another very wonderful couple with us in Pediatric ICU, whose little boy was also there for surgery. During this time, we would frequently check in on each other, and became close friends. During one visit to their "cubicle," I saw as soon as I walked in that something was terribly wrong. They confided that the doctor had just given them very dire news about their child, and his chances for survival were grim.
They looked at me and asked, "you've been in this circumstance, how did you deal with it? What did you do?" At that moment, I drew a complete blank, and admitted that frankly, I don't remember what I did. All I could think to say was that, in retrospect, I did get through it, and therefore, Hashem must have carried me (by the way, their child survived, and has made remarkable progress, b"H).
Now, once again finding ourselves in this situation, we have to figure it out again. Being before the holiday of Rosh Hashana, I looked to the Torah Reading for the two days, the first day being the story of the miraculous birth of Yitzchak (Isaac), and the second day, the Akeida (G-d's command to Avraham sacrifice Isaac on the Alter).
I think of how Avraham Avinu (Abraham our father) must have felt when he received the divine command to sacrifice his beloved son. This child was born to him and Sarah at a very advanced age, and Avraham saw in Yitzchak the entirety of his legacy. When Avraham got up in the morning and set off with Yitzchak to the land of Moriah, I intimately know the lump Avraham Avinu must have had in his throat, faced with the prospect of losing his beloved child.
It is important to note, countering those who criticize this chapter as laced with primitivism, given Avraham's intention to sacrifice his own child, it must be seen in its proper context, Avraham came from a world in which this was common fare, and pagan practices such as these were widely accepted. In fact, these practices - in addition to other brutal and immoral practices - were commonly used as methods of sorcery to manipulate nature, an "art" which has become largely lost over the centuries.
It was Avraham who was able to see the folly of what his compatriots were doing, and railed against these practices. Avraham preached trust in a single G-d of Kindness and Benevolence, and such feeble attempts to manipulate the laws of nature were horribly misguided. Endemic to Avraham's faith was the belief that there is a larger context in which even the painful aspects of life are the will of a merciful G-d, and must therefore be accepted.
In the ten difficult trials that Avraham faced, he amply demonstrated his, with the most difficult among them being the commandment to bind his beloved son Yitzchak to the Alter. With Avraham having taught this view of the world to thousands of his fellow men, G-d specifically picked the prime example of the cruelty that existed in the society - child sacrifice - as the vehicle through which to demonstrate the purity of Avraham's faith. The Torah has thus chosen this as our prototypical example of faith for all time.
Finally, and very importantly, close attention should be paid to Avraham's words to the two lads whom he left behind with the donkeys, before proceeding up to the mountain with Yitzchak. He said to them: "nishtachaveh v'nashuvah aleichem," which means, "we will bow down, and then we will return to you." Avraham communicated that both he and Yitzchak would be returning, which meant that up until the final moment, Avraham firmly believed that Hashem would step in to save Yitzchak, and they would both return safely. However, together with that feeling was Avraham's firm determination to do Hashem's will, and he had every intention of following through - unless Hashem himself stopped him.
We know the end of the story.
So it is with this in mind that we go into Rosh Hashana and begin the New Year. We enter with our prayers and faith firmly in place that Hashem is going to grant our sweet Tehila a refuah shlema (full recovery). Simultaneously, however, we keep in mind the example of Avraham Avinu and his Nisayon (trial) at the Akeida. We remember that Hashem is a G-d of kindness, and we accept his will even where it is painful, and absent a greater context, difficult to understand.
We would like to take this opportunity wish everyone a Shana Tova and K'tiva v'chatima tova. May G-d shower his blessings upon us all, so that we merit be inscribed and signed in the Book of Life in the coming year, for health, happiness, prosperity, and peace.
With love from the Heller family
9/11/13
Upon typing the date above, I would be remiss if I didn't acknowledge the significance of this day. Though now already 12 years ago, it is still very fresh in my mind. I remember anxiously rushing to Tehila's school to pick her up shortly after the attack, with the smoke from the fallen World Trade Centers floating overhead. May G-d bless the memory of those victims who perished on that frightful day, and may the names of those demons who committed these abominable acts of terror - as well as those who continue to engage and support this rabid madness - be eradicated.
I didn't have a chance to mention in my pre Rosh Hashana update, the fact that I paid a visit to the Lakeview school last Tuesday. I went to pick up Tehila's wheelchair, which was still there, in order to bring it over to Voorhees. The staff at Voorhees will be using the chair to get Tehila out of her bed during the day, and to transport her around the facility into more stimulating environments.
While at the Lakeview School, I was warmly greeted by Tehila's teacher, a head administrator, and several of Tehila's therapists, all of whom were present when Tehila went into cardiac arrest. Needless to say, they are all still feeling devastated by what happened, and expressed how much Tehila is missed and how everyone continues to pray for her. They recounted for me, in detail, the sequence of events on that day, and very much wanted us to know how diligent the Lakeview staff and emergency team were in their efforts to save Tehila. As bleak as things looked at that time, there was not one moment's gap in their resuscitation efforts, and absent this extraordinary diligence, Tehila could certainly not have survived. We take much comfort in this, and are enormously grateful to the people at Lakeview who truly love Tehila - and all of their special students.
For now, Tehila's condition remains unchanged. Thankfully, her vitals are very stable, there is no skin breakdown, and no third-space swelling that often occurs when people are ventilated and immobile for long periods of time. Though one can feel Tehila's sweet essence, there is still no overt response from her - her eyes remain closed with pupils fixed and dilated, no facial expression, with only occasional spontaneous movement and intermittent grasping of our hands. Since receiving Tehila's wheelchair in Voorhees, she has been taken out of bed several times, and has thus far tolerated the transition and change of positions, b"H.
I was cleaning my home office yesterday, and while sorting through a pile of papers on my desk, I found Tehila's school photos from just a few months ago. While looking at her sweet little face, Alysia walked into my office, and I showed her what I was looking at. We looked at the picture, then at each other, and at that moment could easily have broken down into tears. Nevertheless, we quickly realized that collapsing into sadness would be of no help to us, so we mutually elected not to go there. We need to preserve our energy to care for Tehila, and our boys need us. Falling apart would certainly be of no benefit to anyone..
(Tired. Will continue tomorrow)9/12/13
There are certain situations in life in which no words - even from the people closest to you - can relieve the pain. In such times, I have come to hear in this a message from Hashem, saying "come talk to me, I will listen, and I will help you." This is most appropriate during this special time between Rosh Hashana and Yom Kippur, but in truth, it is best that one not wait for a personal crisis in order to be reminded to seek Hashem.
Shortly before Rosh Hashana, I received a call from my dear friend, Rabbi Jonathan Morgenstern, Rabbi of the Young Israel of Scarsdale, a wonderful community where I have been serving as Yamim Nora'im Chazan (High Holiday Cantor) since 1995, Very concerned about my emotional state, he offered to fill in for me in my Cantorial duties, should I not be feeling emotionally up to the task. I replied that the contrary was true, as my current emotional state actually makes me more suited for the task, as after all, who could possibly be more appropriate to represent the congregation in prayer than one who is pleading for his daughter's life?
The Rosh Hashana and Yom Kippur prayer "unetaneh tokef" recounts the awe inspiring process of the sealing of every person's fate in the Heavenly Court during this crucial time of the year. The decree has been drafted, but before it is signed and sealed, a person has the opportunity to nullify or mitigate the stern decree through a process of "teshuva, tefilah, and tzedakah" (repentance, prayer, and charity).
Why is this particular prescription set forth for nullifying the decree? Personally, I see this as a progression. The process begins with "teshuva," in which one engages in careful introspection, examining the innermost reaches of his soul. This cleansing process then prepares us for "tefilah," in which we stand in honest confession and prayer before the Creator of the Universe. Finally, we reach the highest earthly stage, "Tzedakah,"
Why might tzedakah be the final and ultimate stage in the nullification of a Heavenly decree? In my understanding, it is because Hashem most desires that we evolve in our ability to selflessly care for others, as this reflects the ultimate achievement of Godliness in life. On the day we were born into this world, we knew nothing other than our own needs, but over the course of our lives we are afforded opportunities to evolve into more selfless, spiritual beings, thus drawing ourselves closer to Hashem. Hashem provides us with these events, precisely the ones we need, however painful and difficult some of them may be. Nevertheless, Hashem is abundantly merciful, and if our experiences move us to engage in teshuva, tefilah, and tzedakah, these decrees may be softened or even nullified.
9/13/13
On this Erev Yom Kippur, Alysia and I would like to extend our heartfelt wishes that all of your tefilot should be heard and accepted by Hashem l'tova (for good). We have no words that can adequately express our appreciation for the abundance of prayers and support for us in the aftermath of Tehila's devastating setback. We hope we have done our very best to adequately express our hakarat hatov, but wherever we may have fallen short, we ask for mechilah (forgiveness).
It is our wish that the outpouring of selfless caring that has been extended on behalf of our little girl will throw Heaven's gates wide open to all of our prayers. May they serve to elevate us all to new heights and closeness to Hashem, such that all stern decrees that currently exist will no longer be necessary, and will thus be rendered null and void.
Wishing everyone a g'mar chatima tova, that we all be inscribed in the book of life for a wonderful and sweet New Year.
With love from the Heller family
9/23/13
We hope everyone had a meaningful Yom Kippur, and is having a Chag Sukkot Sameach.
Tehila continues to be stable, b"H, though we had a few difficult moments over the first days of Yom Tov. Tehila developed what seemed to be an allergic reaction to something, though we are not sure to what. Her tongue swelled and her blood pressure spiked to dangerously high levels on Thursday and Friday. Thankfully, everything seems to have resolved, and she has basically returned to her baseline.
The therapy teams have all completed their evaluations, and are working very intensively with Tehila to give her the best chance for recovery. They are carefully monitoring her responses to a broad gamut of stimuli, and have documented a number of consistent responses to auditory, olfactory, and tactile stimuli. She has still not opened her eyes and her pupils are still unresponsive, so not surprisingly, she still shows no responses to visual stimuli. (Note: during the evaluation meeting, one therapist thought she saw a slight response in one of Tehila's pupils. This was not yet corroborated by anyone else, so a bit premature to confirm. Of course, they will continue to monitor this closely).
We were together with Tehila yesterday and today, and she was holding our hands. We believe she is responding to us, and is aware of our presence.
9/24/13
Despite Tehila's current state, we are thankful that her health continues to be relatively stable. She displays no bodily swelling or skin breakdown, and her color is good. Her legs are extremely tight and difficult to straighten, but after several minutes, we are usually able to do so, and the therapists in the facility are doing the same in her daily sessions.
Needless to say, it is very hard to leave Tehila in a hospital, particularly over Yom Tov, where several days go by in which we cannot visit. In our experience, one never gets accustomed to such a situation of leaving one's child in a hospital, even where it continues over a period of years. We remember this all too well from the time that Tehila was hospitalized in her early years, the pain of having to leave our little girl in the care of others.
Our last update was before Yom Kippur, shortly before my departure for Westchester County, where I just completed my 19th year as Chazan (Cantor) at the Young Israel of Scarsdale. A word of hakarat hatov (gratitude) is most certainly in order, for as difficult as it is to leave my family for the chagim (holidays), the YIS community has truly received me year after year as one of their own. Our dear friends Chanie & Howie Bryks have graciously hosted me in their home year after year, as have our other dear friends, the Reich, Stern, Keller-Seplowitz, Horowitz, and Loren families, who have been hosting me for meals.
Over the course of the Yamim Tovim (holidays) this year, several people approached me and shared with me their feeling that they heard something different in my voice this year - many of whom knew nothing about my daughter's condition. The prayers on the Yamim Nora'im (Days of Awe) are by nature very intense and dramatic, laced with frequent reminders of the fleeting and fragile nature of our lives. This certainly gives us all pause, but when one's own child's life is literally hanging in the balance, I guess it comes through.
Understandably, people do not really know exactly what to say to us, as what words of comfort can one offer parents who find themselves in such a predicament? People ask us how we are doing, and we reply truthfully - that we trust Hashem. If I were to specifically answer the question of how I am feeling, I would probably reply that I feel as if a piece of my heart has been torn out, and was replaced with a brick. But still, we trust Hashem - just the same.
On the eve of Rosh Hashana, we ushered in the New Year with the awe-inspiring Psalm of "L'David Mizmor," which ceremoniously portrays the opening of the gates of Heaven for the "Melech Hakavod" (Honored King). This theme continues throughourt Rosh Hashana, as we recite verse after verse from the Torah, referencing G-d's Kingship in the world, finally culminating with Matan Torah (the giving of the Torah) an event unequaled in human history. We repeatedly chant "Avinu Malkeinu" (Our Father, our King), emphasizing that though Hashem is surrounded by such enormous grandeur, He is not only our King, but is also our Father. Furthermore, he is "Bochen Levavot" (discerns our hearts) and "Yodeah Machshavot" (knows our thoughts), and loves and cares for each and every one of us.
As Yom Kippur concludes, the Heavenly Gates, ceremoniously opened ten days earlier, come rumbling closed during the Neilah Service (literal meaning: "locking" of the gates). Amidst our vociferous declarations of faith recited in unison, the gates slam shut, and our fate is sealed for the coming year.
But is it really?
After Yom Kippur has concluded, we immediately begin our busy preparations for Sukkot, and commence building our Sukkah as soon as possible (for our non-Jewish friends, those are the makeshift booths you often see at this time of year, being constructed outside the homes of your Jewish neighbors). The rituals of Sukkot are rife with symbolism, but the central theme is our faith in Hashem. Even as the weather begins to change, we emulate the faith of the People of Israel who left Egypt for an unknown desert, fully trusting that Hashem would protect and care for them. When we enter the Sukkah each year, we reaffirm the same faith we had in Hashem when we left Egypt, 3500 years ago.
One final thought about the Sukkah - a personal one.
If one needed to gain access to meet with a King or other powerful leader, he would surely need to go through multiple channels to gain even limited access. Not so with Hashem. Though the gates to the Heavenly Palace indeed slammed shut at the conclusion of Yom Kippur, Hashem immediately indicates to us - via the mitzvah (commandment) of Sukkah - that access to him is still available. Hashem imparts the message: "True, the front entrance is closed, but please come around the side entrance to the little inconspicuous booth in the back - you will find me there, and I will be waiting for you."
I have been there many times, particularly recently - just Hashem and me...and my brick.
Sending love and Chag Sameach wishes from the Heller family
10/4/13
In the last few days, Tehila had been showing signs of fighting some sort of infection, or coming down with a respiratory virus. Her secretions were increasingly thick and changing color, and her respiratory status was worsening.
I arrived yesterday at the pediatric facility to see Tehila, and wasn't happy with how she looked. Upon hearing of Tehila's deteriorating status, Dr. Caitlin acted quickly and arranged for transfer to the hospital. Rather than transfer to Philadelphia as we have in the past, she was transferred locally, but the hospital is very well equipped and Tehila is getting excellent care. She stabilized quickly by last night, and is showing steady signs of improvement, b"H.
Since Alysia and I were blessed with Tehila, we have crossed path with many other parents facing similar challenges.. In children's hospitals and various pediatric facilities, one sees numerous cases of children with various syndromes and illnesses, and truthfully, you never get used to it and it always breaks your heart. Almost as a rule, however, we find the parents of these children to be heroic, and it is inspiring to see. But in truth, good parents will do anything for their children, and most of these parents will tell you that they do not see anything heroic about what they do, but rather, it is natural parental behavior to protect and care for their children.
Alysia and I were speaking to one such parent yesterday, whose teenage child sustained serious brain trauma several months ago. This is a young woman who has other children and a profession, but yet, has virtually put every other aspect of her life into a holding pattern in order to care and advocate for her injured child.
In the course of our conversation with her, she mentioned something which brought back some very stark and powerful imagery from our experience early in Tehila's life, when she first became sick. She described a long hallway that she traverses on her way into her son's facility every morning, and described the surreal feeling she has as she walks down that hallway. As she makes her way, day after day, she reflects upon how drastically her life has been altered as she walks this new and daunting path into the unknown.
We remember this feeling all too well from the first months of Tehila's hospitalization at St. Barnabas Hospital, more than 17 years ago. I distinctly remember walking the long hallway toward the PICU, day after day, feeling as if I was descending into a dungeon of darkness. We had no idea what was going to be, and every day, there seemed to be another life threatening issue, and were bombarded with prophecies of doom from the doctors. All we knew was that our sweet little baby was lying in the hospital on a ventilator, and didn't know if we would ever see her open her eyes again. I remember the almost unbearable pain I felt, walking down that hallway, with the words swirling around my mind "Gam ki elech b'gei tzalmavet..." ("As I walk through the valley of the shadow of darkness...").
I took the opportunity to give this heroic young woman some very bold advice, which I would never have been so brazen to do had we not already walked miles in her shoes. My suggestion to her, as strange as it may have sounded, was that she embrace that daily walk down the hallway. The second half of the verse "gam ki elech" is "...lo irah ra, ki atah imadi" ("...I will fear no evil, for You [Hashem] are with me"). We must never forget that when we walk that hallway, as we are not walking alone to the darkness, but rather, Hashem is right there with us, accompanying us through the darkness.
In retrospect, Hashem surely accompanied us through the darkness during those early days, and we subsequently enjoyed many beautiful years with Tehila, which enriched our lives beyond anything we could have imagined.
I took a walk in the hospital this morning, looking for a pharmacy to buy some advil for my back, which is now aching from hours of leaning over Tehila's bed yesterday. The hospital is very spacious, and has many long, hallways. As I walked down one of them leading to Tehila's room in the PICU, I thought about the irony of being back in a situation Alysia and I thought we had left so far behind us.
As many have heard me say, it is surely true that the same Hashem that accompanied us through those dark days at St. Barnabas, is the same Hashem that accompanies us down these hallways today. We have a clear choice. We can "embrace" the darkness and keep walking, knowing that Hashem is by our side, or alternatively, we can choose to fall down along the way, feeling helpless, angry, and lost.
For us, we do not see this as heroism, but rather, emunah 101.
Before I conclude, a small word about some people from whom I draw a good deal of personal inspiration. Not too long ago, I was privileged to play a small role in an effort to save a shul in Perth Amboy, NJ, spearheaded by an old college buddy of mine, Herschel Chomsky. Herschel, a longtime resident of Perth Amboy, has been waging a tireless effort to prevent the sale and dissolution of the 110 year old Congregation Shaarey Tefilah, and thus rebuild the once thriving Perth Amboy Jewish community.
The Mayor of Perth Amboy, the Hon. Wilda Diaz, has been tireless in her efforts to assist Herschel. People from outside the community who heard about the plight of this shul have also given their time and energy to this effort, in particular, attorney Larry Loigman, who has been relentless in his legal efforts to save the shul. Also in the forefront have been Rabbi Joshua Pruzansky Rabbi Yaakov Wenger, and Shabsi Ganzweig, in addition to several others.
A brief word about Shabsi Ganzweig. Shabsie was a single young man when I met him during the early stages of the Perth Amboy Shul trial, and I was extraordinarily impressed by his tireless involvement in tzorchei tzibur (helping the community), his lev tov (good heart), and general desire to help people. Shabsi was married this past Wednesday night, and we would like to wish Shabsi, his kallah Adina, and their entire families an enormous mazal tov on this wonderful occasion!
...and thanks for the inspiration!
We look forward be"H, to bringing only good news on Tehila's progress, and the Heller family wishes everyone a Shabbat Shalom umevorach.
10/7/13
We are very pleased to share the news that Tehila was discharged from the hospital this afternoon, and has been safely transferred back to the pediatric facility. The source of the infection was discovered, and she will be receiving her antibiotics at the facility. She also had an ultrasound this morning to check the clot in her arm she developed in August from the pic-line. Unfortunately, the clot is still there, and she will continue to receive the blood thinner injections for the foreseeable future.
In general, however, Tehila has recovered nicely, b"H. She looks comfortable, and seems almost back to her baseline. Be"h, we hope she will be able to resume her rehab therapy schedule by tomorrow.
We must express our hakarat hatov (appreciation) to Virtua hospital, a local hospital in Voorhees which we had never heard of before. Dr. Caitlin highly recommended admitting her there, and we are very glad we did - the medical staff were extremely kind and accommodating, and Tehila received excellent care. Alysia and I would also like to thank everyone who have expressed concern and stepped up their tefilot on Tehila's behalf since she was hospitalized last week. We have also received some very beautiful and supportive emails, all of which we have read, and deeply appreciate.
I received a particularly thoughtful email yesterday from a very dear and longtime friend, Ari Knoll. In his email, Ari shed some light on what I feel is a very poignant issue, that of a person's ability to perform acts of chesed during a time of distress. He notes that there seems to be a contradiction between two of our sages, the Rambam and Rabeinu Bahya ibn Paquda. Ari writes as follows:
"I must share with you that I recall reading of differing opinions between the Rambam and Rabeinu Bahya ibn Paquda, in which the Rambam notes that it is difficult for a person to extend chesed (kindness) while under deep distress. Yet, Rabeinu Bahya argues to the contrary, that the essence of humanity is to extend chesed, even while experiencing deep distress."
Ari's observation highlights a very interesting paradox, to which I'd like to add a brief insight of my own. I believe that the Rambam (Rav Moshe ben Maimon, aka 'Maimonides') and Rabeinu Bahya ibn Paquda are both correct, and there is no contradiction. When one is experiencing a difficult personal challenge, the Rambam is surely correct in saying that it is more difficult to extend oneself to do chesed for others during such a time. However, I believe that Rabeinu Bahya's opinion, which states that it is natural for a human being to engage in chesed during a time of distress, is meant to teach us that engaging in chesed is particularly beneficial to one who is facing a time of distress.
I recall our receiving this same advice from our dear family friend, HaRav Noach Orlowek, shlit"a, when Tehila had become very sick as a baby. He advised us that the most effective way to deal with such a painful challenge is to engage in acts of chesed, and strongly encouraged us to do so. Personal experience tells us that both Rabeinu Bahya's wisdom, and Rav Orlowek's advice, are absolutely correct.
This rings true for these "updates" as well. Since Tehila's hospitalization this past summer, we have clearly been very involved in managing our own challenging situation. Nevertheless, in deciding to send out these emails, we have made a conscious decision to reach out and share this difficult chapter in our lives. We firmly believe that Hashem has given us this difficult circumstance in order to help us grow, and by sharing, we can all walk this path together. Thank you for giving us this opportunity, it has helped us enormously during this very difficult time..
So, ...thank you! :-)
With love from the Heller family
10/16/13
Tehila has a very important doctor's appointment this morning.
For those unfamiliar with Tehila's medical history, she has what is called a "shunt," which is a silicon drain implanted in the body to drain excess fluid. There is a neurological condition called "hydrocephalus," in which the ventricles of the brain are enlarged due to excess fluid, thus causing pressure in the brain. The condition is treated by implanting a shunt under the skin, which helps drain the extra fluid from the ventricles. A shunt placement is a fairly common procedure with a good success rate, but requires periodic monitoring and may sometimes require surgical revision. This is crucial, as if the shunt malfunctions, it can cause pressure in the brain resulting in very dangerous consequences.
Two weeks prior to her cardiac arrest, Tehila had a follow-up appointment at the Children's Hospital of Philadelphia (CHOP) with the neurosurgeon who inserted her shunt when she was a year old, Dr. Leslie Sutton. Dr. Sutton had then given Tehila a clean bill on her shunt function, but did say that the tip of the catheter was at the edge of the ventricle (as these things often shift as children grow), and recommended that we monitor the situation.
In the aftermath of what occurred back in July, we still have no idea what caused this catastrophic event, but have not discounted the possibility of a shunt malfunction. Even if a shunt malfunction did not cause the issue, it is still important now to make sure that in the aftermath of the event, its function has not been compromised. We are also hoping that a complete neurological series will yield information that will enable us to better help her in her recovery.
We ask everyone to please have our Tehila in mind...
I was thinking about what one should pray for in a such a circumstance. When praying in general, we try not to be overly specific about what we ask for, as we recognize that what we might think is good or beneficial to us at present, may not be so in the greater picture. In this way, we make more generalized requests, and trust that Hashem will deliver those circumstances necessary to achieve the best possible outcome. For example, if we pray for parnasa (a good livelihood), we refrain from asking for a specific job or event, but make the general request for parnasa, and trust that Hashem will direct us properly.
In instances in which we pray for someone who needs a refuah (recovery), we ask Hashem bring about whatever circumstances necessary to help the person recover, including granting wisdom and success to the doctors. I believe we have all seen instances in which intense tefilah (prayer) on a person's behalf has been followed by miraculous results - and many have been documented.
But I was thinking, isn't our situation different today? Tehila's scans today are going to give us more information about her current neurological status, as it is today. If her current status is not positive, then in essence, are we asking that Hashem miraculously alter what currently exists? If so, is this a reasonable request?
I posed this vexing question to our very dear friend, HaRav Dovid Goldwasser, Shlit"a, and he said to me as follows: "Reb Ira, we pray for the best possible outcome, and if Hashem needs to perform a miracle to accomplish this, that's what he will do."
So we ask you to please join us in asking Hashem for the best possible outcome for Tehila today, and b'ezrat Hashem, we will emerge with hopeful and optimistic news...
With love from the Heller family
10/17/13
We had our appointment with Dr. Sutton yesterday, we thank everyone so much for having us in your tefilot (prayers).
We have had approximately 10 follow-up appointments with Dr. Sutton since Tehila had her shunt procedure more than 16 years ago, but this appointment was a bit different. In the past, after taking the long drive to Philadelphia with Tehila for her annual (then later bi-annual) follow-ups with Dr. Sutton, we were always struck by the fact that our consultation with him would invariably last less than a minute. At first, it seemed a bit strange, considering how far we had traveled to see him. But we soon came to realize that the less Dr. Sutton had to say, the better, as it meant that all was doing just fine.
During our appointment yesterday, Dr. Sutton entered the room, and unlike previous appointments, he took a seat. As in all of our previous visits, he reported that the shunt was working just fine, but this time, he knew that this is not exactly what we were hoping to hear. Ironically, we were hoping he would tell us that there was a malfunction that he could surgically fix, and thus give us our precious Tehila back.
However disappointing, Dr. Sutton simply didn't have any positive news give us. The rest of the brain scan showed the effects of the cardiac arrest, and Tehila's current condition reflects this. He said that in most circumstances, the extent of a person's recovery after such an event is best assessed after a year's time, and unfortunately, he felt unable to give us an optimistic projection.What we prayed for going into yesterday's appointment was a "positive outcome," as per Rav Dovid Goldwasser's answer to my inquiry yesterday. Though this was clearly not the outcome we had hoped for, we firmly believe that what Hashem gave us is, in fact, "the best possible outcome."
We refuse to harbor feelings of anger or disappointment, but rather, choose to move forward down this path. It is true that one is free to choose to fall down along the way, and perhaps understandably so. However, the only possible result of such a response is a prolonged journey down that "hallway" we discussed a couple of 'updates' ago, or worse, the squandering of life’s most important opportunities.
It is worthy of mention that during the discussions in the doctor's office, Tehila's blood pressure spiked unusually high, and then calmed down again after we left the hospital. It was as if she heard what was being said, and is trying to communicate to us that she is aware and is still with us.
Also worthy of note that one of things that prevented the doctors from declaring Tehila "brain dead" back in July, is that she quickly regained the ability to respond to pain, thereby negating a brain death declaration. However, we are seeing signs of awareness as well, as when yesterday, she pulled her arm away when they began looking for a vein from which to take blood (they had not yet stuck her with the needle, but she clearly knew it was coming). Then later, upon returning to the pediatric facility, Alysia went to clip Tehila's nails, and Tehila once again pulled her hand away, just as she used to before the arrest (she never liked having her nails cut). We believe that Tehila is sending us a clear message that she is with us, and we continue to reassure her, over and over again, that we have not given up, and will always be here for her..
At some point yesterday, Tehila began to look as if she was beginning to come down with something, and began running a fever. Perhaps it was the strain of the transport and being out all day yesterday. I traveled back to Voorhees tonight to be nearby, and we hope she will not need to be transferred to the hospital this weekend. Once again, we thank you for your tefilot, and we will try to briefly update again before Shabbat.
At some point yesterday, Tehila began to look as if she was beginning to come down with something, and began running a fever. Perhaps it was the strain of the traveling and being out all day yesterday. I traveled back to Voorhees tonight to be nearby, and we hope she will not need to be transferred to the hospital this weekend. Once again, please have us in your tefilot, and we will try to briefly update again before Shabbat.With love from the Heller family
10/18/13
Doctor Caitlin examined Tehila late this morning, and determined that Tehila is responding to treatment, and there should be no need to transfer her to the hospital, baruch Hashem.
Tehila and I spent some quality time together this morning, sang all of our Shabbos songs, and unfortunately had to leave her. Not easy.
Here we are...
Shabbat Shalom umevorach, from the Heller family!
10/25/13
Here's another picture from earlier this week, with Tehila sitting up in her chair.
It has been almost three months since her cardiac arrest, and I cannot say we have in any way grown accustomed to seeing our little girl, formerly so full of life and personality, unable to respond.
In our recent update, subsequent to our appointment with neurosurgery at CHOP, we spoke about Dr. Sutton's report that Tehila's condition is unrelated to a shunt malfunction, and that he was not optimistic about Tehila's chances for recovery. Nevertheless, Alysia and I both feel quite strongly that Tehila has awareness, and is responding to us in whatever subtle ways are available to her. For example, if you focus on the lower right hand corner of the photo above, you can see that Tehila is holding my hand. Clearly, the neural connections that enable her to send commands to move her limbs or make facial expressions have been seriously affected, and whatever small responses we can elicit are still inconsistent. However, we refuse to be discouraged, and we remain optimistic.
That being said, no matter what circumstances we find ourselves in, our role as Teetee's parents is to be there for her, love her, and do everything humanly possible to help her. True emunah does not require stoic acceptance, as that would be capitulation and defeatism, which we want no part of. For those you love, you do everything you can for them, every second they are on this earth; on a broader level, if you truly believe in something, you fight for it, no matter the odds.
Two people who truly live these principles, and have been a great inspiration to me, are our dear friends Moshe Feiglin and Shmuel Sackett. We first met them back in the early 1990's, and have always been enormously impressed and inspired by their unshakeable faith in Hashem, and iron resolve in pursuing their goals on behalf of Am Yisrael (The Nation of Israel) - regardless of the enormous obstacles in their path. Ever since, I have considered them to be my "Rebbes" for Jewish pride.
A few years ago, Moshe's teenage son, David, a brilliant and princely young man, was critically injured when a car in which he was a passenger crashed into a pole. As a result, David sustained massive head injuries, leaving him with extensive brain damage. The situation for David looked extremely bleak as he remained in a coma, and was given little chance of survival or recovery. Moshe, together with his devoted wife Tzippy, refused to give up hope on David, and never left his side. Two months later, David miraculously awakened from his coma, and as the entire country watched in amazement, David began to speak, and later began walking again. Several months later, David was called up to the Torah, and recited the blessings over the Torah, and the birkat Hagomel (blessing for redemption) in front of a synagogue full of people, all weeping with emotion.At about this time, it also became known that Moshe's wonderful wife, Tzippy, was suffering from a chronic illness. Moshe, who is among the most devoted husbands and fathers I have seen, has only grown in his faith and commitment while facing these daunting personal challenges. Further, somewhere along the way, he has even gained the grudging respect of some of his most ardent political critics and detractors. That is why this past January, when Moshe was finally elected to the Knesset (despite gargantuan efforts by "power brokers" to keep him out), it was not merely a "political" victory, but rather, the natural result of his years of unswerving commitment and faith.
This past March, I was visiting my son Yehuda, who was studying in Israel, and Shmuel, together with his ebullient and gracious wife Rhonda, picked us up for special visit to Moshe in his new office at the Knesset. All in all, It was an extremely joyous and exciting visit, but during a private moment with Moshe, I had the opportunity to ask him how he was doing. He replied "You know how it is," as his eyes quickly filled with tears. Yet Moshe continues to move forward, as the strength of his commitment, as well as his stature, continue to rise by the day.
These are the things that give me inspiration. People like Moshe and Tzippy Feiglin, Shmuel and Rhonda Sackett, ...and my sweet daughter, Tehila.
With love from the Heller family
A small addendum here is in order. Moshe, who is an bicycle enthusiast, was unfortunately injured this week in a cycling accident. Baruch Hashem, he has been released from the hospital, and is due to return to work at the Knesset, be"H, this coming week. In the meantime, please have Moshe Zalman ben Esther in mind for a refuah shlemah.
Also, for those who have so graciously included Neshama Tehila bat Chana on their Tehillim and prayer lists, please add the following people as well:
Faiga Perel bat Rachel Chaya
David ben Faiga Perel
Refael Pesachya Yaakov ben Aviva Sarah
Alter Chanoch Henoch ben Bashe
Rut bat MuttiThank you!
11/3/13
I was together with Tehila on Erev Shabbat, though my visit had to be a bit curtailed due to the days now getting shorter. Nevertheless, we had sufficient time for me to sing into her ear all of her favorite Shabbos songs that she loves.
A medication that helps prevent muscle contractures has been increased, and her muscle tone seemed to have substantially improved. Additionally, it was reported to me that Tehila was taken to the recreation room for the first time yesterday, and seemed to tolerate it well (she was there for almost an hour).
On Thursday, Tehila also had a very special visit from HaRav Dovid Goldwasser, Shlit"a, who has had a very close relationship with Tehila since she was a baby. Rav Dovid was elated by the visit, and reported to me that he felt her presence to be very strong, and that she was very peaceful. It gave us great comfort to hear Rav Dovid's optimism, as his friendship and support has been ever so valuable in helping sustain us during the most challenging times in Tehila's life.
Yesterday, Rabbi Jonathan Schwartz shared a Torah insight with us in his Shabbat morning drasha, which I think is very poignant and relevant:
In the Shacharit (morning) prayer, we lead up to the Shemoneh Esreh (main prayer) with "Emet ve'yatziv," while in the Maariv (evening) prayer, we do so with "Emet ve'emunah." Why so? Because during the day, when have the benefit of daylight, we can see 'emet' shown to us through that which we can see and perceive. However, at night, when darkness prevails, 'truth' is more accessible through our emunah (faith), than that which is perceivable to our senses.
The Shacharit prayer, attributed to Avraham Avinu (our father Abraham), personifies Avraham Avinu's ability to discern truth and falsehood in the world around him, thus educating his fellow man and changing the course of civilization. The Maariv prayer, attributed to Yaakov Avinu (our father Jacob), personifies the tribulation filled nature of his life - his flight from Esav, his dealings with his lecherous uncle Lavan, the loss of his beloved wife Rachel, the discord among his 12 sons, the disappearance of his prodigal son Yosef, and finally, the severe famine in the land of Canaan.
We learn from Yaakov Avinu's life in particular, the value of emunah (faith) in the face of difficult tribulations. At the end of Yaakov Avinu's life, after having endured the worst of life's tribulations, Yaakov Avinu is ultimately reunited with his beloved Yosef, now viceroy of Egypt, and goes on to live out his years b'seivah tovah (peacefully), and merits to be surrounded by his entire family at the time of his death.
Thus seen, one can better understand our Rav Dovid's unfettered optimism after seeing Tehila. He surely sees Tehila's circumstances before him, but nevertheless sees past that which meets his eyes, pure in his insight that this darkness will surely be followed by the abundant light that we pray for.
Using the perspective we gain from the life of Yaakov Avinu, together with Rav Dovid's encouraging words, we draw continued strength to move forward...
Wishing all a shavua tov, and love from the Heller family
11/8/13
Over the last couple of weeks, I have been recording audio versions of Tehila's favorite videos, since she is still unable to open her eyes, and still shows no detectable responses to visual stimuli.. Though there is still no conclusive determination at this point what Tehila's level of awareness is, we choose to believe that she is aware, and we proceed on that basis. Clearly, we have been very attentive to even her most minute responses to any and all stimuli, and her therapists are closely monitoring them and are working diligently with her every day.
When I was with Tehila on Tuesday, I asked her if she wanted me to play "Uncle Moishy," and right after, she emitted a squeak. I asked her again, and she did the same, and then again a third time. One cannot draw anything conclusive from this, but it still leaves us room for optimism that Tehila is aware, is healing, and be"H, will continue to improve.
I have been reviewing family pictures for a display I've been creating for the upcoming Bar Mitzvahs of our twins, Aharon & Moshe, this January, be"H. In scanning through the pictures, it is impossible to overlook the scores of pictures of Tehila's sweet, smiling face during happy times. One hug from her in the morning was enough to get me through a challenging day, and the highlight of every Shabbat was having her sit on my lap to sing z'mirot (Sabbath songs) with us. How does one deal with such feelings of pain and sadness? Can a questionable squeak from Tehila truly be enough to wipe it all away?
Yesterday, I was at a service center for handicapped access vehicles called "Drive Master" in Fairfield, NJ, in order to address an issue with our vehicle that we had bought for Tehila several years ago. The owner, Peter Ruprecht, is one of the true quality people out there, and he has become a friend as well. For Peter, his work is not merely a business, but also an ideal in which he deeply believes.
Drive Master was initially founded in 1952 by Peter's father, Alan B. Ruprecht, who was a victim of adult polio that left him wheelchair bound. With his life still ahead of him and a family to support, he refused to despair, and was unwilling to allow his new disability to debilitate or limit him. Using his extraordinary ingenuity and background as an engineer, he went on to revolutionize Adaptive Vehicle Modifications, which at the time were still clunky and primitive, thereafter making adaptive driving infinitely more versatile and accessible to many thousands of handicapped people all over the world. Today, Peter continues his father's legacy, and now sporting an impressive workshop that can custom modify just about any vehicle, they are able to provide added mobility and increased independence for people with even the most severe of disabilities.
Alan Ruprecht could easily have become embittered by the unfortunate turn of events in his life, and under the circumstances this would have been understandable. Nevertheless, he chose instead to embrace his new circumstance as an opportunity, and as a result, went on to produce innovations for adaptive driving that literally changed the world, benefiting thousands of others who would follow - including the Heller family.
In truth, it is very difficult to liken one unfortunate circumstance to another, as no two are exactly the same. However, in each circumstance, I believe that Hashem has embedded a special purpose, and no matter the situation, despair cannot be an option. If one chooses the path of despair, G-d forbid, he thus blinds himself to the opportunities within, and those opportunities will surely be missed.
In the last first of my song, "My Little One," which was surely a gift to me from my little girl, I stated the following:
The story hasn't yet been told about this little girl
but one thing is very clear to me,
a teacher surely has arrived from my G-d above
to show me what is right and wrong in my little worldNow setting out on my 93 mile trip to Voorhees to bless Tehila, and sing with her our Pre-Shabbat songs...
With love and Shabbat Shalom wishes from the Heller family
11/12/13
On Sunday morning, we were notified that Tehila spiked a high fever of 104, which is very unusual and dangerous for her. It was clear that one of us had to be there, so I hurried down to the facility late morning on Sunday. By the time I arrived, her fever had come down, and she was much more stable. Baruch Hashem, things now seem to be under control, without further complications.
Those us who have experienced having a family member become seriously ill understand what it means to live their lives on edge, not knowing what the next moment might bring. In truth, this is a part of life from which none of us is spared, which is why emunah (faith) is so essential. In fact, I firmly believe that attempting to effectively weather such challenges without proper emunah is virtually impossible. Emunah is the only vehicle guaranteed to get us through times like these, but as with all guarantees, it has "terms," in this case, one in particular. That is, the emunah must be pure and unconditional, or the guarantee is effectively voided. In other words, the guarantee simply cannot work for "fair weather emunah people."
A few years ago, a dear friend handed me a book in shul, and emphatically insisted that I read it right away. Though I have a two foot stack of books on my reading queue, I took his advice, and did so. The book of which I speak was written by Rabbi Shalom Arush, who has authored a dozen or so books on various important topics, but central to all of them is concept of pure emunah. From having read these books, my understanding of the true nature of emunah has vastly deepened. and clearly, I am not alone, as Rav Shalom Arush's books (masterfully translated into English by Rav Lazer Brody) have spread like wild fire. Today, there are hundreds of thousands of people who have read Rav Arush's books, many of whom as a result have profoundly improved their lives.
In the Jewish tradition we believe that Hashem "sends the refuah before the makah," which means, that before Hashem sends a difficult tribulation, he first sends us the cure. Intrinsic to this is the understanding that the tribulations we experience in life are for our benefit, but Hashem, in his abundant mercy, "extends his hand" to help us through life's challenges by sending us the vehicle(s) with which to get through them. Hashem's help, however, often arrives disguised in packages that we must ourselves detect and unwrap.
In retrospect, I see the introduction to Rav Arush's wisdom as having been such a package, sent to prepare me for this past year, for without them, I am not sure if I would have been adequately equipped for what was coming. It began back in December, when two of my very closest friends passed away - within one week of each other. These alone were enormously difficult emotional blows, but then, still reeling from these personal losses, my beloved Dad suddenly became ill and passed away in April. By that time, the word "difficult" didn't even suffice to describe this year anymore. But then during the summer, before the year had a chance to end, what happened to our sweet Tehila simply tore out my heart, and that alone - without anything else that preceded it - was more than enough to destroy me. I honestly feel, however, that the strength that I have drawn from Rav Arush's writings on emunah has been a major factor in carrying me through.
Last week, Rav Arush was in America on a speaking tour, and together with my son Yehuda, went to hear the Rav speak at the Young Israel of Kew Gardens Hills in Queens, New York. The enormous sanctuary (built by my grandfather, by the way) was packed to the gills with people, all of whom in their own way having had their lives positively touched by Rav Arush,. The Rav, together with Rav Lazer Brody beside him as English interpreter, spoke to us for well over two hours. The evening was enormously inspiring and extraordinary.
The books of Rav Arush have had such an enormous impact, that they have been widely read and received outside the Jewish community as well. Accordingly, Rav Arush and Rav Brody prepared a "universal" version" for people unfamiliar with Jewish concepts, thus making his powerful message of emunah accessible to everyone.
Below are the Amazon links to Rav Arush's first book, "The Garden of Emunah:"
I assure you, I am receiving no commissions!
...but will gladly accept the z'chut (merit) for helping to spread Rav Arush's crucial message. Those already familiar with these books surely know of what I speak...Began Ha'emunah - Original Hebrew version
The Garden of Emunah - English translation by Rabbi Lazer Brody
The Universal Garden of Emunah (non-denominational version)With love from the Heller family
12/24/13
We realize it has been quite a while since our last update, and understandably, people have been asking and wondering why it has been so long.
First of all, we'd like to thank everyone for their concern, and for continuing to have us in your thoughts and prayers. During the last several weeks, we have been very involved with preparations for the Bar Mitzvahs of our twin boys, Aharon & Moshe, and it has taken a lot of our time. ...More on that in a few minutes.
Tehila is stable, baruch Hashem, though a few of the weeks since our last update have been a bit rocky, as she was having increasingly frequent cyanotic episodes (blue spells, in which her oxygen saturation level dips). In addition, she also had to be hospitalized during one of the weeks for an infection. All in all, however, she is stable now, and she looks good, b"H. We will say a bit more about this, but that too we will get to in a few minutes.
As mentioned, we have been very involved in Bar Mitzvah preparations. It is no doubt a happy and exciting time, but clearly, our emotions are "mixed" given the difficult events of the past year, in particular, the passing of my Dad, and what transpired with Tehila over the summer.
In some ways, it takes us back almost 13 years, when we made the bris celebrations for Aharon & Moshe. They were born prematurely, and we had to wait 5 weeks until they were ready to have the procedure. As you may or may not know, Aharon & Moshe also had a triplet brother, Yehoshua Chaim, who was very tiny, and was born with a serious heart defect. Unfortunately, Shuey passed away only days before the brises of Aharon & Moshe. So almost simultaneously, while basking in the joy of bringing our two beautiful boys into the covenant of Avraham Avinu, we also had to bury our sweet baby Shuey - all in the same week.
In truth, life is full of these contradictory emotions, the joy and the pain. But there are times, as exemplified above, that they come together, and we do not have the luxury to deal with them separately. Nevertheless, I believe that it is the confrontation with this dichotomy of emotions that perhaps gives us some of the greatest opportunities for learning important lessons during our lives. Upon closer examination, feelings of joy and loss - though seemingly contradictory - are actually quite closely related, as the pain of loss is not possible unless Hashem first blesses us with a special gift. It is then the loss of that gift that ultimately causes us so much pain, but only because we were first blessed with a gift.
The most precious gifts in life are surely those special people in our lives. Hashem puts us together in this world for a special purpose, but always for a finite amount of time, and we never truly know for precisely how long. When that time ends, as it inevitably does, we feel the pain of loss, as we are only human. However, of paramount importance is to be able to feel the joy of having had them, for however long we are given with them. Most importantly, it is an imperative that we believe that there is a larger picture in which we were brought together for an important purpose, and that the bonds we form with them are eternal and transcend this life.
When Alysia and I were blessed with our triplets, Aharon & Moshe were in a neo-natal unit in Livingston, New Jersey, and doing well, but our tiny Shuey had to be transferred for special attention to Columbia Presbyterian Hospital in New York City. We spent weeks shuttling back and forth between the boys, until one morning, we received a call from Columbia that Shuey was failing. We rushed over there, and fortunately, were able to be there to spend time with him before he passed. During his last hour, we removed him from his incubator for the first time, and we held him together until his soul departed (I was watching his face, and remember that precise moment). We were blessed to have him for 30 days, until that morning, when together, we literally handed him back to Hashem. The vision of his little face, as we held him, is etched into my memory forever. But clearly, there was a special soul that needed to be in this world for just 30 days, and Hashem entrusted it to Alysia and me. We are at peace with the fact that we did everything we could for him, and feel privileged to have been chosen to be his parents - even for such a short time.
In the aftermath of my dear Dad's passing, amidst the natural pain and sadness, I have an enormous feeling of gratitude in having been blessed with such a Dad. Not only was his caring for our family extraordinary, but the impact of his life's accomplishments went far and wide. I had the special opportunity to express this in an article I wrote in his memory, which appeared in the Jewish Press on June 21, 2013, shortly after his passing. For those who might like to read it, the following is a link to the article: http://www.iraheller.com/Resume/Assets/JacobWHeller.pdf
On the day of Tehila's cardiac arrest this past July, the doctors were quite emphatic in their opinion that Tehila was brain dead (G-d forbid), and had no chance to recover. Clearly, we were distraught, but I vividly recall those moments, as we followed Tehila's ambulance to St Peters Hospital in New Brunswick. Alysia and I thought at the time that this would probably be our last day with Tehila, and we spoke about how this little girl brightened up our lives for 17 years, contrary to what the doctors initially told us when she was born - that we should not expect her to survive for even one day. Further, we were told that if she did miraculously survive, she would be nothing more than a lifeless body, with no quality of life. My goodness, how wrong they were. The enormous joy we have had from this little girl is beyond any measure. So amidst the searing pain we were feeling at that moment, we could not help but feel enormous gratitude to Hashem for that gift of 17 years with this extraordinary little girl, and how privileged we felt to have had the opportunity to be her parents.
We arrived at St. Peters hospital with the expectation that we would be sharing our last moments with our Tehila. Nevertheless, she once again defied the odds, and to the shock of the entire medical staff, her vital signs began to stabilize. We were repeatedly told by the doctors that given the nature of what had happened to her, all that remained were reflexive responses of the brain, and could not be expected to last for more than a few days. As recounted in our earlier updates, our response to them is what we have become accustomed to telling doctors over the years. We explained that they did not quite yet know with whom they are dealing, as Neshama Tehila bat Chana is a miracle girl. Within a few days, Tehila had made believers out of all of them, as this, in essence, is what her life is all about.
We are coming upon five months since that time, and Baruch Hashem, our Tehila is still with us. Though her current state leaves us unable to interact with her and enjoy her sweet and unique personality, we still feel privileged to be her parents, and are grateful to have her still in our lives. Clearly, the pain of seeing her in such a state is undeniable, but even here there is a very important lesson, as we learn from the experience of Yaakov Avinu (Jacob the Patriarch) in the last few Torah portions.
For more than two decades, Yaakov Avinu's beloved son Yosef was missing and presumed dead. In the aftermath, Yaakov Avinu's state of mind, as described in the Torah, was that he was "unconsolable." There is something a bit puzzling about Yaakov Avinu's reaction to the loss of Yosef. True, Yaakov Avinu was human, but surely a man of his stature must have understood that mourning - though an essential part of the healing process - has prescribed limitations, and he understood that life must continue. So why, through all this time, was Yaakov Avinu seemingly unable to cease his mourning over Yosef?
I had a few thoughts about this. In truth, though Yosef's brothers reported back that their brother Yosef was dead, and even brought back to their father the "evidence" of Yosef's bloody robe to support their story that he had been mauled by a wild animal. Nevertheless, Yosef's body was never returned to him, and there was no closure for him. On one hand, he suffered greatly from not having had any conclusive knowledge regarding the fate of his child. But also, on some level, Yaakov Avinu must have harbored a glimmer of hope that somehow, somewhere,Yosef was still alive, and might still see him again.
Seeing the story from this vantage point, I feel there is a very important lesson. For years and years, it is fair to say that Yaakov Avinu's hope of ever seeing his son again was but an impossible dream, but nevertheless held onto this hope in the firm belief that Hashem's salvation can come "k'heref ayin" (in the blink of an eye). Then, after more than 20 long years, he suddenly receives word that not only is his Yosef alive, but has become the assistant to the Pharaoh of Egypt.
The lesson is, "yeshuat Hashem k'heref ayin," (Hashem's salvation comes in the blink of an eye), and so it can be for Tehila as well. We do not delude ourselves regarding the seriousness of Tehila's circumstances, but the story of Yaakov Avinu teaches us never to give up, and we have not.
Now, back to the "news," and there is, in fact, something we would like to share. About two weeks ago, Alysia and I noticed that on two separate occasions, that Tehila's eyes seemed to have opened just a bit. We were not sure what to make of it, but it was later reported to us by the teacher Sara, who has been working with Tehila every day, that she had noticed the same. During my visit with her this past Erev Shabbat (Friday), there was no doubt that Tehila was trying to open her eyes, and for about 10 minutes, they were open almost halfway.Understandably, we have been rather guarded about attributing too much to this, but we remain forever mindful of the fact that Tehila is still our "miracle girl," and b'ezrat Hashem, is healing, and will return to us.
A crucially important factor in all of this are all the tefilot (prayers) that have been said on her behalf, and for that, we cannot thank you enough. We are so grateful to all those who have shared with us the inspiration that they have drawn from Tehila, as this is no doubt a tremendous z'chut (merit) for Tehila, and for all of us.
As part of our preparations for our upcoming Bar Mitzvah, we have prepared a special Bencher/Birkon (A booklet containing the Grace after Meals), which features memories of Aharon & Moshe, as well as their drawings collected over the years. On page 11 of the booklet, we dedicated a page to Tehila, which contains a prayer meant to be said at the Friday night Shabbat table between Shalom Aleichem and Eshet Chayil. It seems that most people skip it because it is so long, but this is an abridged version, which makes it much more manageable. It is a beautiful tefilah for the wellbeing of our families, and for those that feel they can add this on, it would give a tremendous z'chut to Tehila and all the added blessings that come with it.
Between now and Shabbat, I will be posting a link in which the images to the bencher can viewed, and the tefilah can printed.
With abundant brachot, and wishing a wonderful week to all!
The Heller family12/31/13
Apologies for not having posted the images of our "Birkon Aharon & Moshe" (the bencher we created in honor of the twins' upcoming Bar Mitzvahs), before Shabbat, but here they are, in time for next Shabbat, be"H. In it, there is a special page with an abridged version of the tefilah "Ribon Kol Ha'olamim," dedicated to Tehila (page 11).
As mentioned previously, many people skip "Ribon Kol Ha'olamim" because it rather lengthy, but there are those who do take the time to say it, or have fond memories of their parents and grandparents saying it. In an email we received from our dear friend Rebitzin Rivkah Blau, daughter of HaRav Pinchas Teitz, ZT"L, Rebitzin Blau reminisced about how her father used recite the "Ribon Kol Ha'olamim," in a very sweet melody, upon returning home from the Synagogue on Friday night. She also quipped that due to the healthy length of the prayer, it gave her, her mother, and sisters some extra time to complete the Kabbalat Shabbat (the service welcoming the Sabbath).
In addition to our little princess, Tehila, many of you know that Alysia and I are blessed with four wonderful boys. Those who are similarly blessed can certainly attest to the fact that attention spans at the Shabbat table can tend to be rather "limited" (particularly among active boys). It is with this in mind that we put an abridged version in our Bar Mitzvah bencher (just the first two sections). However, it is clear that "kol hamarbeh, harei zeh meshubach" - those who can recite the entire prayer (without risk of projectiles beginning to fly across the table), it is most praiseworthy!
This following is a link to a pdf of the entire "Birkon Aharon & Moshe," which was designed specifically for the occasion of the twins' becoming B'nai Mitzvah. It contains original designs, pictures of the boys from birth to present, and assorted drawings made by Aharon (specifically for this project) since 2009.
Click here: BIRKON AHARON & MOSHEThe following is a separate link, containing just our page dedicated to Tehila, containing the abridged "Ribon Kol Ha'olamim,: Click Here: TEHILA'S PAGE - RIBON KOL HA'OLAMIM
For those who do not currently say this tefilah, but will be adding this Shabbat b'zchut refuah shlemah l'Neshama Tehila bat Chana (in the merit of Tehila's full recovery), thank you so much! If you already say this tefilah, we would be very appreciative if you would say it with Tehila's refuah shlemah in mind. Clearly, taking this on is a "win-win," as the prayer is a request for peace and wellbeing for our families, and we can all certainly use an abundance of that!
In closing, one more little "bright spot." During my time with Tehila, I usually spend almost all of it singing to her. This past Tuesday, I sang "My Little One" to her for the first time in quite a while, a song she loves and always used to ask for (she clearly knew it was her special song). Shortly after beginning this song, Tehila began to open her eyes - almost halfway - as she has been doing intermittently over the past few weeks. As soon as the song was over, she slowly closed them again. We continue to feel strongly that Tehila has awareness, and continue to hold on to the hope that she is healing, and will be able to return to us - at the proper time, when she is ready, be"H.
On that very bleak day back in July, after Tehila had her devastating cardiac arrest, I dare say that nobody who was there that day would have imagined that Tehila would ever be able to open her eyes again - unless of course, they believe in miracles.
With love from the Heller family
3/25/14
We realize it has been quite a while since our last update, in fact, I see that this will be our first one in 2014. We sent out the last one a couple of weeks before leaving to Israel for the Bar Mitzvahs of our twins, and just recently, had a small celebration for the boys with our community in Hillside, NJ. Needless to say, this all kept us very busy, but we very much appreciate all those who have been concerned and inquiring about Tehila's progress. We will fill you in now.
Baruch Hashem, Tehila remained stable while we were in Israel, though she did come down with a bug in the last few days before we returned. Thankfully however, they were able to manage her in the pediatric facility, and she didn't need to be moved to the Hospital Intensive Care Unit.
Since our last update, Tehila has basically maintained her status quo. Her health has been stable for the most part, and her degree of consciousness remains a question mark. She still holds our hands, and periodically opens her eyes part of the way. She also moves her tongue, stretches her arms, and twitches her shoulder from time to time, but still remains open to interpretation as to whether this is an attempt on her part to communicate. From our perspective, our recent experience with her makes us feel strongly that she knows when we are there, and is responding to us.
The last couple of weeks, however, have not been so uneventful. A little over two weeks ago, Tehila began having some episodes in which she began clamping down, and it became difficult to ventilate her. These episodes became increasingly worse, and she finally had to be transferred to the Hospital about two weeks ago. Though we haven't been able to reach any definitive conclusions as to what was causing the episodes, they seem to have receded, and her respiratory status is now stable. One very plausible hypothesis is that it is a generalized response to discomfort, which actually lends support to theory that she may be becoming more conscious.
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Plans were in place to transfer her back to the pediatric facility immediately after this past weekend, but on Shabbos, Tehila developed an unexpected complication. For some reason, yet unexplained, her ileum spontaneously shut down, which means, her bowels simply stopped working. This is clearly a dangerous situation, so her feedings had to be stopped, and tubes were placed to relieve the pressure in her bowels. Yesterday, they attempted to place a PICC (Peripherally Inserted Central Catheter) to allow them to feed and medicate her Intravenously. Unfortunately, they hit what seems to be a blockage, and were unable to complete the procedure. A team from Children's Hospital of Philadelphia (CHOP) was supposed to be coming today to do the procedure, but for logistic reasons, were unable to come. Unless this situation resolves itself by tomorrow morning, we are going to have to transport her to CHOP tomorrow to have the procedure done thereNeedless to say, these setbacks have been rather stressful, and it is very difficult to make any projections about how long it might take for the current issue to resolve. We thank you for continuing to have Tehila in your thoughts and prayers...
In the larger picture, this week will mark eight months since Tehila suffered this catastrophic event last summer. Those who went through that heart wrenching week with us will surely remember how Tehila had been all but written off by the doctors who were involved at the time. Still, the attending physicians in the St. Peter's Hospital PICU in New Brunswick were all very supportive, but even they held out very little hope for our Tehila's survival.
So here we are, almost eight months later. Though we are unfortunately not able to say that Tehila has regained consciousness and come back to herself, we can certainly say that she has once again defied all of the initially pessimistic expectations. But even as things currently are, we feel abundantly blessed by the mere fact that Tehila is still a part of our lives. She is still our 'miracle girl,' and we believe that her incredible and inspiring story has been a special reminder to all of us that Hashem rules the world, and we should never give up hope.
I came across a wonderful insight about Emunah, which I would like to share. In Rav Shalom Arush's Perush (commentary) on Sefer Bereishit (the book of Genesis) he discusses the fourth day of creation, on which day the Sun and the Moon were created. R' Arush cites a famous Midrash, which describes a "discussion" that took place between Hashem and the Moon on the fourth day of creation. The Midrash states that the Moon and Sun were originally of equal size, and the Moon raised an objection to Hashem, asking "how can there be two rulers sharing but one crown?" Hashem acknowledged the Moon's point, and in response, dramatically reduced the size of the Moon, and also relegated it to being a mere reflector of the light of the Sun.
I always found this Midrash to be a bit difficult. What is this coming to teach us?
Rav Arush alludes to two important lessons. First, this interchange between Hashem and the Moon teaches us much about conflict resolution. This was the first "machloket" (dispute) in the history of the world, and by Hashem's responding to the Moon's objection by diminishing its size, He demonstrated that true conflict resolution can take place only through genuine modesty. Since it was the Moon that raised the objection, it was the Moon that became destined to be the proverbial example of modesty. We learn from the Moon's fate of its diminished size that conflict is rooted in haughtiness, and only by the diminishing of one's own pride can true conflict resolution take place.
The second lesson relates to Emunah. Rav Arush points out that the Sun symbolizes Da'at (knowledge), and the Moon symbolizes Emunah (faith). Intrinsic to this symbolism attributed to the Sun and the Moon is an important lesson about the essence of "Tikkun Olam" (correction of the world). Though the world today is brimming with da'at, (knowledge), true Emunah is still relatively scarce by comparison. Where Emunah is overshadowed by da'at, haughtiness dominates, and the answers to life's difficult challenges become more obscure. But because Emunah is so easily overshadowed by da'at, one must constantly use his "koach Habechira" (ability to choose) to give Emunah preeminence over da'at. Thus, by strengthening one's own Emunah, the forces of good in the world are strengthened, and we move closer to our goal of Tikkun Olam.
In the Kiddush Levana (monthly prayer over the new Moon), we recite a paragraph in which we request of Hashem that the Moon be restored to its original size and splendor, just as it was at the time of Ma'aseh B'reishit (Creation). Implicit in this request is a longing for the ultimate redemption, when Emunah in Hashem will gain parity with Da'at, and pain and sadness will disappear from the world.
...Before signing off, we would like to take this opportunity to express our gratitude to all those who have been so helpful to us during the last two weeks. We thank those who brought meals to our home for our boys while we were in the hospital with Tehila. And we thank everyone who has been davening on Tehila's behalf. We are proud and touched to report that over the last two days, our friends and family have completed two recitations of the entire book of Tehillim (Psalms) on behalf of Tehila's refuah shlemah.
...we look forward to sharing b'sorot tovot...
With love from the Heller family
PS - This is a YouTube link to Bar Mitzvah Slideshow for the Bar Mitzvahs of Aharon & Moshe:
https://www.youtube.com/watch?v=b4cGbzGS7Iw
Tehila and me - praying together:
4/14/14
We are very pleased to announce that earlier this week, Tehila was discharged from the PICU at Virtua Hospital, and has returned to the Voorhees Pediatric Facility. Since her return, she has been very stable, and is in the process of getting back to her therapy schedule. Baruch Hashem.
As Tehila's hospital stay became more and more prolonged last month, we faced the possibility of her being in the Intensive Care Unit through Pesach (Passover). Clearly, if Tehila was compromised, either Alysia or I would have been with her in the PICU, which would have created a very complicated situation in which to properly prepare and celebrate Pesach. However, her condition is now stable, and we are very grateful for that.
But it is a strange sort of gratitude indeed. Just last Pesach, Tehila sat on my lap at our Seder, giggling and singing 'Dayenu' with us, while this year, she lies in a pediatric facility, unable to move or speak to us. Seen in this light, these circumstances might naturally invoke more pain and sadness than gratitude.
However, an insight into the message of Pesach helps to give me some comfort and encouragement. Pesach is "z'man cheruteinu," (the "time of our freedom"), in which the Jewish People were liberated from the bondage of Egypt. Then, just weeks later, they stood at the foot of Har Sinai (Mount Sinai) where Hashem revealed himself to the Jewish People, and they received the Torah.
So here is a reasonable question. Was the receiving of the Torah, which was the culmination of the exodus from Egypt, a true representation of "Freedom?" For our non-Jewish friends who are familiar with Torah observant Jews, you have witnessed Sabbath observance, the dietary laws, and of course, the rigors of Passover preparation. With all due respect, what kind of "freedom" is this??
Using the difficult circumstances in our lives as a reference, how these circumstances are experienced by us can create the differentiation between Bondage and Freedom. Without the revelation at Sinai, and without the central presence of Hashem in our lives who has established a special and purposeful order in the universe, we would be left with only the pain and sadness resulting from the seeming arbitrary cruelty of our circumstances.
Therefore, it is the presence of Hashem in our lives and our uncompromising trust in Him that ultimately serves to free us from the Bondage of Egypt. It is our belief in Hashem's benevolence that allows us to perceive ourselves as being recipients of blessings, rather than victims of our circumstances. Though our Tehila will unfortunately not be with us at the Seder this year, we feel enormous gratitude that she is still with us, and continues to be an important part of our lives. In a sense, therefore, as we enter Pesach this year, it is Tehila's continuing story that has the most to teach us about our journey from "avdut l'cherut" (bondage to freedom).
L'shana haba'ah birushalayim! (Next year in Jerusalem!)
With love and chag sameach wishes from the Heller family
6/3/14
We last updated everyone on Tehila shortly before Pesach, which I instantly know was just over seven weeks ago since we just completed the counting of the omer last night. As always, we thank everyone so much for their continued inquiries and concern about our sweet little girl.
One such inquiry just came from one of Tehila's nurses, Dyanne, who though not Jewish, acquired a rather comprehensive Jewish education from Tehila's Uncle Moishy videos. She just recently sent a text to Alysia, inquiring if she would be receiving a "pre Shavuos update" to follow the pre Passover update. Clearly, she is a very observant nurse, which I am sure was an important factor in Tehila's pulling through the horrific events of this past July 30th, as it was Dyanne who was on duty with Tehila on that fateful day. Had Dyanne not acted as quickly as she did, together with the wonderful Lakeview School staff and the paramedics, Tehila could not have survived.
Clearly, Alysia and I never let go of our dream that Tehila will open her eyes and start speaking to us again. In fact, I've had that dream many times. Still, there are days when we are with her, or when we hear back reports from Tehila's teacher Sara at Voorhees, that Tehila gives us signs that she knows we are there, and is trying to communicate.
Tehila's condition has been very stable recently, and she looks well, Baruch Hashem. Below are two photos, the first from a family visit with her from a few days ago, and the second, from one of my recent pre-Shabbat visits with Tehila:
Alysia and I do not search for reasons or explanations about why this happened to our Tehila. What we search for are ways to deepen our emunah in Hashem, so that our trust in Him will not waver, even when the sadness overwhelms us. Barely a moment goes by that we do not think of her, and there is an enormous void in our home without her that simply does not go away.
I guess there is certain significance to Dyanne's request for a "pre-Shavuos update," as this chag (holiday) truly speaks to this message. Shavuos is the holiday in which we celebrate the anniversary of the giving of the Torah at Mount Sinai. This was an event that was meant to teach morality to all of mankind, and the Jewish People were the signatories on their behalf.
In following the events of the giving of the Torah, as recounted by the Torah itself, there is something rather unusual about this "contract" forged between the Hashem and the Jewish People. Before the Jewish People ever had a chance to have even a glimpse at what the Torah contained, they recited the words "Na'aseh v'nishmah," which means "we will do, and we will hear." Intrinsic in this statement were the essential terms of this contract, which was an unquestioning prior acceptance of its edicts, void of any foreknowledge of what they were. Thus this was an eternal contract, signed with emunah.
This is a fitting message for me to keep in mind, as I now leave for my pre Shavuos visit with Tehila. We renew our gratitude to Hashem for everything Hashem has given us, with trust that all He has given us is for the best.
With love and Chag Sameach wishes from the Heller Family
9/23/14
Our last update was in June, we hope that everyone had a very pleasant summer!
Many people have been asking about Tehila, and awaiting an update on her progress. As always, we thank everyone so much for their concern, and most of all for their tefilot (prayers) on Tehila's behalf. We never cease to appreciate every last thought and prayer, and we believe with a full heart that every one of them has reached her, and is helping her. Given what Tehila has been through over the past year, we feel abundant gratitude to Hashem that recently, her condition has been very stable, and the summer was relatively uneventful. We are sharing a recent picture of our precious girl, and one can see that she looks angelic and well, and b'ezrat Hashem (with G-d's help), is continuing to heal and recover.
We have been living with these circumstances for over a year now, but life clearly continues, as we have our four boys and our other responsibilities. But inevitably, during the course of a typical day, thoughts of Tehila will inevitably pop into our consciousness. For me, when I pass Tehila's empty room, see one of her toys, sit down at the Shabbos table without her and sing the songs that she loved, or anything else that reminds me of her, a heavy pall of sadness washes over me. It just reminds me over and over again that Tehila is no longer home with us, is in the care of others, and is unable to respond. Even if something is bothering or hurting her, she is unable to cry out or ask for help. Often, during the times that we are visiting with her, and her eyes begin to tear - is she telling us that she is aware of our presence? Is she trying to communicate? We still have no definitive answers.
For most things in life, even those that may seem terrible at the time, it is always best to look for the "positive side," and it can often be found. But then there are circumstances in which it seems that there is nothing to be found but sadness. I think about this past summer in Israel, beginning with those three precious boys that were kidnapped and brutally murdered, and then there were all the sons and fathers, cut down in the prime of their lives while fighting the evil in Gaza. What can anybody possibly say to comfort these scores of shattered families?We all long for a world in which our children do not get hurt or sick, and a world in which young children do not lose their parents - whom they need so much. But clearly, this is the world in which we live, but it is surely the world that Hashem created. So there is a bottom line for me, and I do everything possible to try to live by it. Many people have heard me say the following, over and over again, regarding our circumstances: "We trust Hashem. This is a yes or no choice, there is no gray. You can't trust Hashem on Monday, but not on Tuesday. You can't trust Hashem in one situation, but not in another. You either trust Hashem, or you do not, and I choose the former."
So when the sadness inevitably arrives, where do I go? There is a place of "no comfort" that exists for me. It is a little place in my heart that I began to carve out when Tehila became critically as a baby. I was there often during the numerous times that we nearly lost Tehila, and was certainly there when we lost our little baby Shuey more than 13 years ago. Now, I find myself visiting that place many times each day, every time I think about my Tehila.
Nevertheless, there is an intrinsic irony here, and it is this. When faced with one of these "only sadness" situations - and life truly spares nobody - it is in only in these "no comfort" areas that true comfort can be found. Why do I say this? Because experience has taught me that it is in those areas of true despair that Hashem can inevitably be found, waiting for us. It is when we are cornered by the sadness, with seemingly nowhere else to turn, that we come to the full realization of how much we need Hashem. When we are in that place, and reach out to Hashem with a full heart, He in turn shows us how much he is truly there for us. But even then, Hashem's help cannot be fully received unless we first give him our full and complete trust...
It is this trust which opens the pipeline from Shamayim (the Heavens), and once opened, we are then equipped to start to see the signs from Hashem. To give just one example, here is a personal story:
During one of my long trips to South Jersey to see Tehila (about 100 miles), I found myself falling into one of those "sad moments" I have been describing. I decided to stop for a drink, something I rarely do, always being in a hurry to see my daughter. I parked at the rest stop, and on the way into the building, bumped into a special friend I had not seen for quite some time. This person was Rabbi Yechiel Spero, author of the acclaimed "Touched By a Story" Artscroll series. Rabbi Spero was not aware of what had transpired with Tehila, and I briefly brought him up to date. Clearly seeing that my spirits were in need of a lift, Rabbi Spero wasted no time in sharing a special story with me, which truly lifted my sagging spirits. Most comforting about this encounter, perhaps even more than Rabbi Spero's beautiful story, was the message of this confluence of events. I have no doubt that Hashem arranged that encounter in order to lift my spirits, but most significantly, it was Hashem's way of reminding me that he was there, and is watching over me. It was as if to say, "Please do not despair, keep walking this path, and I promise you, everything is going to fine. Please be patient, and at the right time, you are going to fully understand why all this had to be."
As we move into the season of Rosh Hashana, we surely look ahead to the New Year, but at the same time, we tend to look back at the previous year. With this hindsight, we most often see how a year prior, we couldn't possibly have predicted what would transpire over the year. Ultimately, we see that we are truly not in control of our own destiny. What we do see, however, is that we do control how we respond to our destiny. If life pushes us down a path full of challenges - even the "no comfort" type of challenges, then we must trust that it is Hashem who is leading us down this path, and is thus the best path for us, and the path that we must follow.
So on this Erev Rosh Hashana, Alysia , myself, and our entire family would like to thank everyone for all of your heartfelt thoughts and prayers on behalf of our Tehila. We pray that our choice to share these personal perspectives, inspired by Tehila, will continue be a blessing for her and for all of us. We would like to take this opportunity to wish everyone a year of only the best of health, and refuah shlemah (full recovery) for those who need it. May it be a year of prosperity, success, and true faith in Hashem. May it be a year in which the forces of good in the world will prevail, and we will see the emergence of world leaders who possess true yir'at Shamayim (fear of Heaven).
And finally, may we all be inscribed in the Book of Life for a Shana Tova Umetukah (Happy and Sweet New Year)!!
With love from the Heller Family
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