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.