Lo Aleynu

My father has a weird Jewish expression that I grew up hearing constantly. It’s “Lo Aleynu” which means “not to us” which really means “whatever terrible tragedy you were just talking about should never descend upon our lucky heads.”

So if someone had (please whisper this word) cancer, it wasn’t just (please whisper this word) cancer, it was “lo aleynu cancer.”

Lo aleynu divorce, lo aleynu problems with their kids, lo aleynu not such a good year in the toy business.

The idea I got from all this, when I was young, is that we were more fortunate than everybody else. Everyone else could have something bad as long as we did not.

Of course this is not what my father meant at all.

The reason I bring this up now, is that my little girl had open heart surgery today. We spent the whole day in the lo aleynu hospital, waiting for our turn, crazed when it actually was our turn, and then on “shpilkes” which is a GREAT Yiddish word you should know, while the surgeon cracked open her tiny five- year-old chest, stopped her heart and lungs, sewed up the penny-sized hole in her left ventricle, restarted her heart and lungs, closed up her body and came out to the waiting room with a very enthusiastic smile and accepted, ok endured, my very enthusiastic hug.

And yes, I still believe we are very fortunate.

And not just because the surgery was (thank God) successful.

Because I saw a boy today who was on his sixteenth surgery. He was three-and-a-half.  And I met his parents who schlepped from rural Pennsylvania and are spending weeks and weeks in the city, and staying at Ronald McDonald house because it’s only 35 bucks a night and the social worker here at Morgan Stanley Children’s Hospital arranged it for them and their other little son whom they try to keep quiet in the waiting room.

And because I met a very orthodox woman whose nine-month-old is on his second surgery this week;  the infant’s tiny, pitiful hands wringing themselves silly as he lay all intubated and wrapped in gauze bandages.

And because every room around here tonight with its ICU monitors blinking red, green, blue and yellow (believe me, it’s not as pretty as it sounds) holds a fitfully sleeping child and a desperately-trying-to-sleep adult curled on the narrow window ledge, with a nurse carefully checking vitals by flashlight so as not to disturb—when suddenly, BEEP!--and the parent jerks up—and, well you know, that parent wasn’t really ever sleeping at all.

Because now, I see we are all in this together. And lo aleynu is NOT my kid versus your kid or my business versus your business. 

We are fortunate because we understand that modern medical science is the greatest thing in the entire #$%*ing world and that we are true beneficiaries here in NYC, and that saying lo aleynu or really believing in lo aleynu isn’t really going to stop anyone from having, as my little girl did, a Ventricular Septal Defect. And just because someone else’s kid has, lo aleynu, a Ventricular Septal Defect, my kid could still have it, too.

Today I realized that lo aleynu doesn’t mean that it shouldn’t happen to my family. It means that it shouldn’t happen to any of us. 

Your children are my children.

I am ashamed that I ever thought otherwise. 

Disheartening

“And know that in life a person has to pass over a very narrow bridge. The main thing is not to be afraid.”  -- Rebbe Nachman

For five years we knew it was coming, but now it’s-- tomorrow. Our beautiful little girl, the one with the long pink-gold curls and the sage green eyes and the wide smiley mouth lit up with an impossibly cute little gap between her front baby teeth, is having open heart surgery to repair her Ventricular Septal Defect.

When we met with the surgeon (I feel like saying Baruch Hu u’Varuch Shemo like we do for God), I joked feebly that she was so tiny, how would the anesthesiologist be able to work with her? He looked at me and said,—“What? She’s HUGE!”

Most of these VSD’s are caught, as was ours, a few days after birth. A nurse leans in with her stethoscope and “Um, Doc? Please come here!” Most are repaired before the baby is a year old. Some heal themselves.

Our little girl’s did not. The hole—it is a hole in the wall between the right and left ventricle—was too large.

So we shlepped her to a pediatric cardiologist every few months when she was an infant;  then were told that we only had to come once a year. We were downgraded and we were happy.

We fell into a parental lull. We knew she had this “thing,” but there were no symptoms.  She ran, she climbed, she ate like a little chazir.

When we would think about it, we would look at her a little longer, or stroke her soft cheek an extra time. We would laugh about the major crush she had on her tall, Abe Lincoln-like pediatric cardiologist.  (Whom we thought was Jewish because with a name like Snyder and a practice in Scarsdale, we asked him what he was doing for the Seder and we were shocked when he told us he wasn’t a MOT.)

Then he looked at her heart with that groovy machine, paused, had me remove the stickies, dress her, and shoo her out into the waiting room to play with her twin brother.

“I see more leakage. And the heart is slightly enlarged.”  My husband’s face went white.

“It’s time.”

Our little twins were miracle babies, and maybe that shouldn’t figure into the cheshbon, or way of thinking, but the fact that they made us new parents again (at our age!) makes us kind of grateful to them. And weirdly protective. 

And also because, as my husband says, speaking for us and their older brothers and sister:

“We got attached.”

So we went down the checklist and got clearance from her dentist, called the hospital where she was born to affirm her blood type, found out who is going to be the designated directed blood donor (me), got a urine sample (nu, you go and try to get one of those from a five-year-old girl!) and are took her in for the pre-op echocardiograms and x-rays and blood work.

Our family and all our friends are being super-supportive and offering us places to crash near the hospital where we can sleep or shower, and offering to take her twin brother for hours, and offering to bring food over for my husband and me, who will be tag-teaming throughout the five day stay.

I guess they all know it’s gonna suck.

What I know is that I feel lucky. Because I am not the richest or most important person in the world, but my little girl is getting the best possible care there is. And I know that I will start crying when I say hello to the medical staff tomorrow morning and that I won’t stop during the three hour procedure, until they come out, poopoopoo, with a big thumbs up. And then I will really cry.

So pray and hope that the surgeon has a good night sleep after, say, a nice chicken dinner, and no one parks in his spot in the morning, and the elevator is working and all the papers are in order and the whole dang thing isn’t postponed like they warned us it might be if she has a cold or something like that, and that the cardiac support team is in good spirits and pumped (ha!) to save a little life.

And then go give your children a hug. From me.