How to Ride a Roller Coaster: Discussions from the PICU

Mushky Naparstek, Brooklyn, NY
Belief in G-d / Essays 2018

Three months ago I thought I knew how to ride a roller coaster, now I realize I’m only learning… It’s a lesson my almost 3 month old daughter Shaina, in critical condition since birth, has taught me by virtue of being and fighting.

Medical staff, family, friends, strangers and fellow PICU parents alike have joined me on a roller coaster that I now call life. I now realize there are many a roller coaster rider out there for whom a Chassidus outlook would be of immense benefit as it has been for me. Most people don’t expect life to take unexpected turns until it does, and that’s where having worldview shaped by Chassidus comes into play. How? I came to appreciate the difference in approach through discussion with the staff and fellow parents here at the PICU.

That difference can be described in three interconnected components:

  1. Doing our part spiritually
  2. Doing our part physically
  3. It’s not all about us – Trust

Step One: Doing our part spiritually

Maria’s daughter was Shaina’s roommate for some time. In our conversations I often heard phrases such as “You and I are just unlucky people…”, “I’m so scared of what will be next…”, “There’s no way I’m living through this”, and “I feel like giving up”. Together with Maria I cried… I cried for her child stricken with severe brain damage, and I cried about her lack of direction and her helplessness not having had the same background I am blessed to have. Honestly, I cried about my daughter, too.

Maria asked how I wake up every morning ready to take on the day’s challenges anew. We spoke about G-d’s interest in the small picture events and the little people in the big world. If a leaf does not fall off of a tree in vein[1] – can we not say the same about a human being?! The Lubavitcher Rebbe writes in a letter, “Just as He has a say in the big world, He certainly has a say in our little personal world”.[2] My thoughts drifted to my own daughter Shaina, to whom the doctors could find no parallel in all of medical history. G-d surely has a bigger plan for her! Her mere existence tells us – don’t get caught up in the moment – realize there’s a master plan!

Realizing that there is a supernal power pulling the strings up on high fends off thoughts of unluckiness and self-destruction, as the Rebbe writes in another letter, “This very thought – as to what will happen if, G-d forbid, a misfortune occurs – is itself a misfortune”[3].

The realization that G-d is in control of every minute event also prompts us to approach our pain and be proactive in spiritual ways, because it is all in G-d’s hands. In a letter to an individual whose child was ill, the Rebbe answered, “continue your work in disseminating Yiddishkeit among your friends…”[4]. When faced with an overwhelming challenge, adding in Torah and Mitzvos directs us toward the solution instead of the problem.

With the knowledge that scoring points with G-d is our only path to deliverance, we try to do our best in scoring as many points for Shaina as possible. Shaina’s bed is decorated with the traditional “Shir Hama’alos”, a certificate of her letter in the children’s Sefer Torah, and a picture of the Lubavitcher Rebbe. Forums were created on whatsapp and beyond with hundreds of people praying in her merit, totaling to date over 80,000 chapters of Tehillim. In Shaina’s merit, a weekly phone conference of Torah study was born, as well as many commitments in Torah and good deeds. We report to the Rebbe daily about Shaina’s progress. These endeavors are important because our foremost responsibility is to enhance our relationship with G-d, everything else will follow.

We learn this from Esther in the Purim story: When Esther prepared to approach Achashverosh and plead for her people, she seemingly should have captured his heart by adorning herself and preparing herself physically, to make a good impression on him. Instead, she spent three days in fasting and prayer (physically weakening herself), thereby displaying confidence that contrary to nature’s typical course, it is G-d who is controlling the unfolding events.[5] Similarly, in our case, Shaina’s recovery is not bound by nature nor the medical prognosis but by G-d’s plan. As such, doing our part means giving Shiana the spiritual strength to overcome this challenge.

Step Two: Doing our part physically

I’ll never forget the Thursday morning we were called for a meeting by the ICU director. He wanted to make sure we understood the severity of Shiana’s situation, that there wasn’t much more medicine can do to help her. Not to say that we were calm, we tried to cling to the lessons gleaned from our Chassidic upbringing. Our thoughts in turmoil, we tried reminding ourselves that G-d is in charge and we should never give up in the physical sense as well. With a Chassidus perspective in mind, we did our best to stay on course, and our response was quite sharp: “We as parents will give our 100%, you as doctors should give your 100%, and G-d will then give his 100% – the 100% that matters most”. That became our motto.

The Torah tells us[6] that “G-d will bless you in all that you do”. Chassidus explains that the last few words are in no way superfluous, since they express the need to create a physical medium through which G-d’s blessings will come.[7] G-d’s blessings cannot flow through a vacuum. Taking care of our physical responsibilities such as participating in discussions with the doctors and ensuring the hospital bills are paid are coextensive measures to our spiritual responsibilities. It is part and parcel of doing what G-d wants us to do in such circumstances.

Maria couldn’t understand how I endure the exhaustion that comes along with the day to day medical responsibilities. What she failed to realize is that “when connected above one does not fall below” – and that taking care of the physical, taking care of the spiritual, and taking care of ourselves is all one in the same since the thread binding them all is the direction from G-d!

Following this approach brings us to even greater heights. Chapter 55 of Tehillim states, “Throw your burden on G-d and he will sustain you”. The simple meaning of this verse is that by trusting G-d, he’ll correspondingly help us out in our struggles. The Rebbe explains a deeper understanding of the word “Yechalkelecha” (he will sustain you), coming from the root-word “Kelli” which means a vessel. Once we do all that we can on our end, spiritually and physically, then G-d will expand our capacity and “Yechalkelecha” – make an even greater vessel to store the abundance which he would like to give us. [8] We learned this lesson from a visitor who himself has been through challenges and emerged stronger than ever. Seeing the embodiment of this lesson in the aforementioned visitor made it all the more real for us. We will do our part, and G-d will do His!

Step Three: It’s not all about us – Trust

Sitting on the hospital chairs near Shaina for so many hours can sometimes take its toll on us… Are we really doing all we can? Are the doctors really doing all they can? And then we’re reminded by the sign on Shains’s bed citing the Tzemach Tzedek – “Think good – it will be good!”. It points out that yes, we must give our 100%, and yes, the doctors must give their 100%, but the 100% that really matter are G-d’s, and his will no doubt pull through. The one thing G-d’s 100% depends on is our trust. [9]

I got very excited one day when I read the daily Torah portion of Parashas Beshalach, learning Rashi’s explanation to the origin of the instruments with which the women danced after the splitting of the sea. He comments that the women exiled in Egypt were so certain that they would experience a miraculous delivery, that they prepared instruments with which to sing and dance upon their redemption. Their tactic worked wonders, and the eventual redemption was attributed to their merit. This got me thinking about the Rebbes’ approach to challenges and I realized there was only one way to go about our current struggle and that is through nonstop positivity. The Rebbe writes quoting the previous Rebbe[10], “When a soldier sets out to the battlefield, he strides forth to the joyful rhythm of a triumphal march. This makes it possible for the victory to be greater and speedier.” The uniquely Chassidic approach is recognizably different and refreshing to the PICU staff, fellow parents and volunteers that stop by. Moreover, it’s contagious.

In another letter addressing health issues, the Rebbe writes “in the spirit of Lechatchila Ariber, it could be suggested that rejoicing over the improvement in one’s health should be advanced ahead of time, even though the improvement is not yet manifest”. This suggests that through faith in G-d, one brings the blessing which is already waiting to come down to be manifested in actuality! Displaying trust in G-d, notwithstanding the current situation, is the key to a better situation.

With this in mind, we forged ahead and arranged a Kiddush in Shaina’s merit in a nearby Chabad house, serving as a Seudas Hoda’ah – a meal of thanks, thanking G-d for the miracle we had not yet even seen. As a matter of fact, that Shabbos morning Shaina suffered a tremendous setback from which the doctors thought she would (C”V) never recover. They started offering their condolences… however, by the time the Kiddush came around, we were able to confidently show up at the Chabad house to say Lechaim for the day’s miracles and all miracles to come.

How to ride a roller coaster:

The doctors are continuously amazed by Shaina’s resilience and ability to handle what they never thought she could. They wonder where she gets her strength from. We, however, do not wonder. We know that her Father in Heaven is fighting for her, and the spiritual interventions from far and wide are keeping her strong. We know that the doctors’ abilities are from Hashem alone, and all they do is carrying out their job as G-d’s emissaries. He will make the miracles, with or without them.

When life takes unexpected turns, when we feel the intense ups and downs, Chassidus help refocus, realizing our place and our mission, reminding us of G-d’s constant presence, especially here in the PICU.

In no way are we perfect, and there are challenging times, but we are slowly learning how to ride the roller coaster of life. 1. Doing our part spiritually 2. Doing our part physically 3. Realizing it’s not all about us – trusting the one being it’s really all up to.

[1] The Ba’al Shem Tov

[2] Igros Kodesh, Volume 5, letter 1276

[3] Igros Kodesh, Volume 5, letter 1284

[4] Igros Kodesh, Volume 8, letter 2529

[5] Likutei Sichos, Volume 6, page 191

[6] Devarim, 15:18

[7] Likkutei Torah Devarim p. 37b

[8] Based on Likkutei Sichos Volume 36 pg. 11

[9] Igros Kodesh Volume 12 letter 3979

[10] Igros Kodesh vol. 19 letter 7132