Shaare Zedek Hospital
Two hours ago I delivered a beautiful baby girl with Down syndrome. When she came out, she seemed normal to me. I asked, Is she normal? The midwife answered, Shifra, it's hard to say yes.
What kind of an answer was that?
It took me a second or two to catch on. I didn't feel anything, just rational acceptance. All the doctors and midwives were in the delivery room looking at the baby. What they were saying fit with what I had just heard. My own words from last night came back to me: Ill love you as you are.
A doctor came over to me and said, We all see that she doesn't look like a regular baby. Tomorrow well do tests. I nodded in understanding. I was taking it all so calmly, so emotionally detached. When the midwife came over to me, I put my hand on her arm. Thank you for telling me, I told her. I knew the midwives are not allowed to tell. I was so glad that they hadn't made a fool of me by lying to me.
The midwife asked if I wanted to nurse the baby, and I answered in the affirmative. I clutched my precious bundle to my heart and whispered, Ill love you the way you are; I promised you. I was surprised she latched right on and started nursing like a regular baby. She was so beautiful. She looked normal to me. Poor little thing.
My husband was being ushered in. Mazel tov! You have a baby girl, he was told. His face lit up with delight. I couldn't stand the deception. She's not normal, I told him urgently. Now my kids were on the phone. I was not ready for this. I couldn't tell them over the phone. We have a baby girl, I told them uncomfortably. They were thrilled, which made me even more uncomfortable.
Mazel tov! Mazel tov! they cried. We guessed you were going to the hospital! they told me, so proud of themselves.
Finally, my husband and I were alone. Its mainly a social problem, he said. I nodded and asked him, What would be worse - a retarded child or a wicked child? A wicked child would be worse, we agreed. We sat in silence for a long time. It was very late. Finally I sent him home.
Now I'm in the maternity ward (writing in the dark). I think it would be much more normal (and probably healthier) for me to be crying than react like this, with acceptance and resignation. I’ve already been told that I'm terrific. I'm even acting cheerful and saying, This, too, if for the good. I'd had the uneasy feeling that wed been very blessed, while all around us people had tzaros (troubles). I miss my baby and long to hug her. Last night, Shabbos, I was awakened by a contraction, a full two weeks before my due date. Ten days ago, my doctor told me that the baby was in a transverse position. Now, with labor starting, I was frantic to know how the baby was lying. I couldn't tell.
Turn around with your head down, I told her. I clearly heard a voice: I don't want to be born. I'm not normal; I have Down syndrome! I’ll love you as you are. Just please position yourself head down. Otherwise, they'll pull you out by C-section, I told her. Then I fell into a deep sleep.
On Shabbos morning, I woke up in labor, feeling that everything was fine. A midwife friend confirmed that the baby was in cephalic (head) presentation. Baruch Hashem.
Tomorrow, how will I deal with all the cheerful mazel tovs?
At 6 A.M. this morning, I went to the nursery to get my baby for her morning feeding (I knew they wouldn't bring her to me when they distributed all the babies). The nurse there told me that a few weeks ago a baby with Down syndrome had been born to a very young mother, her
first child. The mother hadn't come to see her baby and didn't want to take him home. I felt sorry for that mother and very fortunate for my
healthy children at home.
A midwife friend came to visit me after she finished her night shift, and we talked. I told her that I didn't know how to react to the mazel tovs. She explained to me that the mazel tovs were appropriate and to accept them. I wasn't totally convinced, but at least I knew what to do. I told her that I knew this could happen at my age (I'm forty-four) and had consciously taken the risk. I wanted to do Hashem’s will.
I am finally crying. Baruch Hashem, I'm normal. The tears come and come. I have no complaints to Hashem. I know He knows what He's doing, and everything Hashem does is good and chesed. So why do I have to cry? Because on some level there must be a lot of pain in a situation like this. I have to get in touch with this pain and get it out in order to be healthy and get on with life. How much do I have to cry?
By noon my tears dried up, and everyone started visiting. They came in warily. Anyone who had seen my husbands face figured out that something was wrong. To each of them I said, Say mazel tov! Look at the baby - she's beautiful. Can you tell she has Down syndrome?
So now I cry and cry all morning. Could this really have happened? This is a bad dream, and I cant wake up.
I am very organized. In the mornings, I draw the curtains around my bed and cry my heart out. In the afternoons, my tears dry up, and I'm cheerful and optimistic. Dr. Jekyll and Mr. Hyde. I have been receiving tremendous amounts of support. It seems as if just about everyone I know has come to visit me, and it gives me strength. Many of them confide in me the ordeals they've been through that I never knew about. No one wants the other fellows pekel (burden).
What I have to remember is, if this is what Hashem gave me, then this is the best thing for me. At my age, I had a one in seventy chance of having a baby with Down syndrome (that's 1.5 percent). Statistically, I should have been among the sixty-nine normal ones. I needed special hashgachah pratis (providence) to be the one out of seventy. For a good reason, this baby had to come to His world this way, and she had to come through me. Everyone who is affected by it had to be affected. In this world there are no answers. They say that in the next world there will be no questions.
Hashem has been giving me so much strength. I have been receiving tremendous kochos hanefesh (spiritual strength) from Him. I myself would have collapsed in a heap. Hashem! Please dont leave me. Please don't let me fall.
The baby has jaundice (this is to be expected with Down syndrome), and they want to send me home without her. I will not go home without this baby. This is a special case, I declare, and they relent.
A friend comes and reminds me that I studied healing and one-brain therapy. Treat your baby, she insists. I do imagery, healing, and one-brain on the baby. The image that comes to me is white light flowing into the baby, and the flowing out carrying the yellow particles.
The baby's billirubin has dropped sharply, baruch Hashem. My baby and I are going home. Shifra Bar Memel lives in Jerusalem with her husband and thirteen children. They are all crazy about their delightful baby.
Reprinted with permission from Horizons-The Jewish Family Journal
This article first appeared in issue #7 of Down Syndrome Amongst Us