Faith in the NICU
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Faith in the NICU

Faith in the NICU

I thought if I could remain in control of every factor affecting my son's life, perhaps I could cure him.

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Time takes on an unusual quality in the NICU, with life-altering events taking place in minutes, and parents aging lifetimes in the few short weeks of their children's stay in that room.

We were already NICU veterans, having traversed the long, tortuous path of ventilators, IVs, and tube feedings. We had been moved from the right side of the NICU, which housed the most severe cases, to the left side, which housed babies on their way out. It was a quieter, less intense environment. The beeping of machines was stilled for the most part, and babies were able to cry normally, freed of silencing ventilator tubes.

In this more relaxed setting, I was able to take note of my neighbors, and I looked up with interest when two new visitors entered the NICU. They were coming to visit a baby who had been brought in that afternoon. An adorable little girl with a head of black hair, she had been born six weeks early and was placed not far from my son's bassinet. The new parents had come in earlier to see her. This was clearly their first child, and they seemed calm but a little confused and overwhelmed. Now, the proud new grandmother entered; a middle aged Hasidic woman in a head covering, leading her elderly father; a frail Hasid with a long white beard and side-locks framing his shining face. He was clearly overjoyed at the birth of his first great-grandchild.

Their glowing faces were rays of light in the somber environment of the NICU as they observed the new arrival in her incubator with mingled love and wonder. They then approached the nurse on duty and asked a few basic questions about the child's health and her ability to eat and breathe, after which they prepared to leave. Everything was done with a beaming smile and the constant refrain of "Baruch Hashem" -- thank God. They seemed completely unruffled by this unexpected turn of events in their lives.

Watching from the sidelines, I was completely nonplussed. They were not bombarding the nurses, as I had done, with questions about every detail about their child's weight, condition, care, future. They had no interest in discussing apneas or bradycardias. Although I had trained myself to say "Baruch Hashem", it had certainly not been my first reaction upon visiting my new son. (Nor, I imagine, would it be if it were my first grandchild.) I wondered at the difference between us. Clearly their faith in God stood on firmer ground than did mine, but was their serene acceptance admirable or naive? I couldn't decide.

My son was discharged from the NICU a few days later, and I never saw the Hasidic family again. Two weeks later, we celebrated my son's bris, and I considered this chapter of my life to be closed. After all, the baby was nursing beautifully, gaining weight steadily, and even rolling over! What could go wrong now?

As it turned out, plenty. From the reflux to the failure to thrive to the delayed development, life was no longer simple. I found myself fighting for control of our lives through an endless cycle of new doctors, technicians and therapists. I would record every word that they said, and then do my own research in an attempt to discover information that would miraculously affect a cure for whatever was wrong. Because clearly, despite our heroic attempts at control, something was wrong.

They demonstrated a profound understanding of the principles of faith by recognizing that control is not in our hands. Research, yes. Control, no.

When the "something" was eventually diagnosed as cerebral palsy, I spent days feverishly researching everything I could find about the disorder -- its history, treatments, therapies, and prognosis. If I could remain in control of every factor affecting my son's life, perhaps I could cure him.

And then, as if in a dream, I recalled the Hasidic family from the NICU. I only saw them once, but that was enough to know that they would never react in this manner. Although I had questioned their reactions at the time, I began to understand them now. Their actions were not foolishly naive, as I had originally suspected. They demonstrated a profound understanding of the principles of faith by recognizing that control is not in our hands. Research, yes. Control, no.

I believed that if I questioned the nurses about every detail of my son's care, he would remain healthy. They recognized that despite any intervention on their part, the ultimate result was in God's hands. They did not believe, as I originally suspected, that if they had faith and prayed, everything would turn out fine. Rather, they understood that God was in full control of their granddaughter's fate. While they wanted to understand her condition, and asked a few questions to that effect, they did not attempt, as I had, to remain in control. Grilling the nurses would not change the fact that neither the parents, nurses nor even the doctors were in charge.

Their simple faith now gave me the strength to face the challenge that lay ahead. A challenge that lay, not in hours of research and investigations, but in quiet acceptance of the Almighty's will. While I did continue to research all the available treatments and therapies, and I did not hesitate to question the doctors (putting in the responsible amount of effort the situation certainly required, I no longer believed that my son's fate hinged on my actions).

Yes, I pray and say Psalms for him daily, but I no longer pray for all his difficulties to disappear overnight. I pray that he receive the appropriate therapy and treatment that will enable him to lead a full and meaningful life. I pray that God lead us to the doctors who will accurately diagnose and treat his various medical issues. Above all, I pray that God give me the strength to accept my son for who he is, with his unique strengths and weaknesses, just as I accept the strengths and weaknesses of my other children.

I pray for the ability to accept my new life situation with love and joy; to recognize that we are all being constantly carried in the strong hands of our loving Father. After all, is there any better place to be?

Published: May 26, 2007


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Visitor Comments: 22

(22) Esther, July 8, 2014 6:08 PM

It's Hashem' s world!

Sometimes being pushed to the corner helps us realize, submit and nolify our control/ or lack thereof- to the ONLY reality there is. Namely that of GOD! our part is to do our hishtadlos and cast upon Hashem our troubles, for only HE can deliver us. Very scary but also freeing.

(21) Leah L., December 21, 2007 2:02 PM

Your article is a profound lesson in emunah to all...may Hashem grant you the strength to continue and may you have much nachas from your son

(20) andrea, July 24, 2007 5:39 PM

it is never how you thought it was going to be

my son was born with pink lips, blonde hair and blue eyes. he looked absolutely perfectt to me, even including the little mark on his tongue (which everyone thinks he has hurt himself) and the mark on his jaw line that might cause him difficulty when he starts shaving.)

when he was about 3 and 4 months old, my idea of his perfection was shattered by a diagnosis on the autism spectrum. he was a very challenging kid, who tried us constantly which is why we had him assessed. when i was told that his brain was wired differently than other people's what i heard was that he was defective, which was a word that was jarringly repetitive in my brain over the next two weeks until i gave birth to my daughter. thankfully the 'defective'thing stopped soon after and even though it was hard, we channeled a lot of energy into helping him maximize his potential.

all these years later, he still has a diagnosis on the autism spectrum, but he is also, an incredible student (we have our challenges, but overall, he is an amazing student) and we are just becoming aware of his savant abilities (which took a long time to show up, because they were hidden by his 'smarts')

today, i can honestly say that he is the person he is, challenges and all, because of this diagnosis. If he did not have it, he would have some skills, but not others, and it is the others that make him so exceptional as a human being. these are the same skills that make rabbis and teachers who meet him think that he could be one of the ''illui's of our generation, or at very least, a rosh yeshiva, or a lawyer or some other career where detail is important. he is who he is because he is who he is.

I did not handle it well way back when, but i got busy raising my kid and doing the best i could for him, and putting one foot in front of the other. looking back, it is much easier to recognize that while he did not turn out like i thought he was going to way back when, by some miracle (must have been of hashem's because i am not sure a person could have thought my kid up) he is much more exceptioal than he would have been had he been 'perfect.' i also laugh harder and am probably a better parent than i might have been otherwise. i am grateful.

(19) gail rosen, June 27, 2007 9:03 PM

I pray the prayers for healing come true, may the Almighty give blessed strength

I appreciate the Aish.com information, Shalom

(18) Do Lern Hwei, June 5, 2007 4:21 AM

Hold on in there and do not despair!

Your faith in Ha Shem is really encouraging. I have a younger brother, aged 34 who has cerebral palsy too. My Dad insists on looking after him personally and he is 74.

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