To my right, sleeping sweetly in her carriage, is my precious little baby girl. Hard to believe three months have passed since her birth; they definitely grow up too fast! I glance at her and my breath catches in my throat yet again as I marvel at her perfect features and her porcelain skin, not to mention the tuft of hair that crowns her forehead. Can it be? I wonder, time and again. Can it be that we were really chosen to be the parents of this wonderful child, to love and cherish her and raise her to the best of our abilities? With Batsheva Temima’s birth I have become, at the age of 39, a first-time, brand-new mother, despite the fact that she’s my seventh child, baruch Hashem. Because our Batsheva was born with a really extraordinary surprise! She has Down syndrome! And now our family has set out on a new journey rich with fantastic experiences, spectacular lessons, and a remarkable community that we never even knew existed.
We discovered that Batsheva has Down syndrome only the day after she was born, after sending adorable pictures of her to family and friends around the world. A stern-faced nurse appeared in my hospital room and said, very severely, “Mrs. Pomerantz, the doctors would like to speak to you right now.” My heart plummeted. What were they about to tell me? Had my child, G-d forbid, been born with a terrible disease? I prepared for the worst.
After some polite hemming and hawing, the doctor finally got to the point. “We have a suspicion that your adorable little baby has Down syndrome,” she said.
“You mean that’s it?!” I cried in relief. “From the look on your faces I was afraid my baby wouldn’t be leaving the hospital, chas v’shalom!”
This pregnancy had been my most relaxed one yet. A year ago, I had written to the gadol hador, Rav Chaim Kanievsky, shlita,asking for a brachah for a healthy baby. Via his daughter, Rav Chaim responded, instructing me to daven three times a day and bentching me that my baby should be “bari v’shalem,” healthy and whole. The day we discovered she had Down syndrome, we realized just how providential this brachah would prove to be: the echocardiogram showed that Batsheva’s heart was perfectly healthy and so was the rest of her! We checked out of the hospital on time, with a clean bill of health, baruch Hashem, which is no small miracle. Clearly, the tzaddik’s brachah was mekuyam and our gratitude to Hakadosh Baruch Hu was overwhelming.
That first day, after receiving the news, my husband and I worked through our plethora of feelings, predominantly shock and confusion. “I feel so weird,” Joel shared. “Everyone’s coming over to me and saying, ‘Shetizku l’gadlah l’Torah, l’chupah u’lemaasim tovim,’ but that’s not happening for her.” Although we had decided not to tell the kids or our families yet, until after they had met the baby, I did make a few strategic phone calls. I called our rav, who gave us tremendous chizzuk and reminded us of what a special neshamah had been entrusted to our care. I called my aunt, who, in another stroke of hashgachah pratis, is a social worker in Israel who works extensively with children who have Down syndrome. She was able to use her connections to get me started with setting up therapies and special programs. And the last person I called was a neighbor who is the mother of an adorable four-year-old boy with Down syndrome.
“Mazal tov!” I told her. “I just had a delicious baby girl! And she has Down syndrome!”
Nothing could have prepared me for her reaction.
“Eizeh kef lach!” she crowed. “Eizeh kef lach! You’re so lucky, you don’t even understand how lucky you are! You know,” she went on, “my children were just debating amongst themselves if our new baby (she had given birth a month before me) should be born with or without Down. They couldn’t decide. They said that it’s so amazing to have a baby with Down syndrome that maybe it would be kedai for the new little one to have Down too!”
Her enthusiasm was infectious. Still, I had some important questions I needed to ask before I could move forward.
“What bothers me,” I shared, “is that my baby isn’t going to look like our family. She’s going to look more like other kids with Down syndrome than like the rest of the Pomerantz children.”
“Mah pitom!” protested my neighbor. “That’s not at all true! Look at my son—he’s the spitting image of our family! And besides,” she added, “there are families where all the kids are blond and blue-eyed and suddenly, out comes a gingi [red-head]! Everywhere they go, everyone says, ‘What’s with the gingi? Are you sure she wasn’t switched at birth?’ There are all sorts of surprises with kids.”
She had a point there, but I wasn’t yet ready to concede.
“Still,” I pressed. “The fact is that every other mother on the maternity ward is going to be walking out of the hospital with a normal, regular baby, except for me.” Tears of self-pity sprang into my eyes.
“Oh, you really think so?” my neighbor said cynically. “If you’d like, you can delude yourself, but I suggest that you reevaluate that assumption. All of those ‘normal, regular’ babies come with their own pekelach. Whether it’s at five months or five years or 15 years, there are always surprises that crop up, because every child is a world and everyone comes with their own challenges.”
Her insight brought me up short.
“What about the child who needed speech therapy, occupational therapy and three years of kriah tutoring? When his parents brought him out of the nursery at Shaarei Zedek did they have any inkling of what awaited them? He certainly looked like a ‘normal, regular’ baby then. What about the child with ADHD? Could anyone have fathomed what lay ahead when he slept in that bassinet in the hospital, peaceful and calm?
“You see?” my neighbor concluded. “In the case of Down syndrome, it’s stamped on their forehead for the whole world to see, but is that necessarily a bad thing? If anything, it’s a plus! This way, everyone knows who they are and what their challenges are. Everyone cuts them slack because they see, right away, that they have developmental delays. With Down syndrome, the path ahead of you is so clear-cut. You’ll start therapy, you’ll do exercises with her, there’s no ambiguity. If anything, it’s an even bigger brachah. Imagine all those parents out there who are raising children who look ordinary and regular but are anything but. They have to struggle in silence. Imagine their pain, and then tell me who’s getting the better end of the deal!”
I hung up the phone soberly. She had definitely given me a full menu of food for thought. From that moment on, our perspective shifted completely. My husband and I were zocheh to receive tremendous siyata dishmaya to accept our baby as the perfect addition to our family—a sweet gift straight from Hashem. From that place of whole-hearted joy, we brought our kids to the hospital and let them hold and kiss the new baby.
“She’s so gorgeous!” they cooed.
“Yes, she is,” we agreed. “And you know what? This amazing baby came with a surprise!”
“What?” they wanted to know.
“This surprise,” we explained, “Is not bad or strange. It’s just different.”
With that, we told them, very matter-of-factly, that Batsheva was born with Down syndrome, which meant that her development would happen slower than other babies.
“You’ll teach her how to walk and talk and you’ll help her get stronger,” we reassured them.
Some of the older kids cried, which was very natural. We let them feel their feelings and supported them through a mix of emotions. They wondered about how they should tell their friends. We suggested that they be very open about it, especially since, as we repeatedly emphasized, Down syndrome is not something bad or scary. If anything, children with Down syndrome have a special, elevated neshamah, and it is a privilege to have Batsheva in our family.
Our older son remembered that a friend in his yeshivah also has a brother with Down syndrome and that the parents even adopted another baby with Down as well. When he told his friend about our baby, the reaction was very much like my neighbor’s.
“You’re so lucky!” his friend told him. “They’re the most incredible kids! We love them!”
One of my children is an exuberant straight-shooter and “says it like it is.” So before we knew it, the entire community knew that our baby had Down syndrome.
“Um, Riva, I’m sorry for asking, but, uh, does your baby have Down syndrome?” my ganenet called me up shortly after the birth.
“Yup!” I said. “Good news travels fast!”
“Well,” she told me. “Your son came to my door at gan this morning and he told me, ‘We have a new baby and she has Down syndrome! She’s very cute!’”
I was so glad that the news was out, because our family is very anti-secrets, simply because they tend to imply something shameful or embarrassing. Down syndrome is obviously neither. It was also very important to me that our community know how we expected them to react to our news. As we told our children, Down syndrome is a surprise—not something negative, just something different. But since our society has a difficult time accepting “different,” it would only be natural if the people around us were to feel unsure of how to greet us and our baby. I wanted everyone to know, from the get-go, that we were thrilled with our delicious newborn and that we did not need pity, sympathy or abashed looks. We also wanted everyone to feel comfortable asking us any questions they had and speaking openly about our baby—no hushed whispering necessary.
This attitude came in very handy when people made comments that were uncomfortable or strange.
“Oh!” exclaimed one very well-meaning woman. “Hashem should be ‘mefatzeh’ you with lots of nachas.” I stopped her in mid-sentence. The Hebrew word “mefatzeh” comes from the root “pitzui,” which implies compensation such as is awarded after the receipt of defective merchandise.
“Why would I need a ‘pitzui’?” I asked her. “I didn’t get damaged goods! I got a healthy, beautiful, extraordinary baby!”
On Shabbos, a woman who had seen my Batsheva only a few weeks before, noticed me holding someone else’s baby.
“That’s yours?!” she breathed.
“No,” I said. “It’s my friend’s baby.”
“Oh,” the woman went on. “I thought that maybe Hashem had made a big miracle and fixed your baby.”
“But she’s not broken!” I laughed. “Why would she need fixing?”
Our Batsheva Temima, named for Rebbitzen Batsheva Kanievsky, a”h, and because she is just so “temimah,” which means “perfect,” has given us so many new opportunities to learn and grow.
This week, a six-year-old friend who was playing at our house announced, “Your baby looks strange!”
“Oh!” I said, very loudly so that all my children could hear. “Are you noticing that her eyes look different? That they’re almond-shaped?”
“Uh huh!” nodded the child.
“You’re right!” I said. “That’s because our cute baby is born with something called Down syndrome, which means that she does things slower than other babies. But we’re teaching her a lot and she’s getting very strong every day and we love her so much.” I crouched down next to him. “And don’t you think her eyes are so beautiful?”
“Yeah,” he said with a smile.
My oldest daughter and I were out shopping at the mall when the saleswoman noticed Batsheva staring up from her carriage.
“She has Down syndrome?” she gasped. “Please, please, let me hold her!”
She scooped up our baby and hugged her tight.
“My sister has Down,” she said, with great emotion. “I could hold this baby forever!”
This has actually happened quite a few times. It is clear that our Batsheva’s very special neshamah connects on a deep level with people around her who instinctively feel a connection with her. During this pregnancy, I inexplicably found myself davening, for the first time ever in my life, that this baby should bring a lot of light to the world. Now I see exactly where that tefillah was headed.
The first thing people ask me when they find out about Batsheva’s “surprise” is, “Did you know beforehand?” The answer is, no. Our rav advises against doing in-depth sonograms, so there was no way for us to know. And I’m very happy I didn’t know beforehand. This way, in the right time, when we were actually put into the nisayon, we were also given the strength to handle it.
Some people wonder whether we were angry or disappointed—after all, we were ostensibly expecting a regular baby, and instead we got something different. The premise behind this question is confusing to me. In receiving a child with Down syndrome I have not been, G-d forbid, cheated or duped, or even punished. Exactly the opposite! I was given a baby, baruch Hashem! A precious child—a gift beyond compare! I am so fortunate! And she’s healthy! And beautiful! Yes, she will require different methods of care, and her path in life may be different from that of her siblings, but is that a problem? Is that any kind of tragedy? I cringe to even write those words. A friend of mine shared that early on in her pregnancy she discovered that she was carrying a baby with Trisomy 19. Her baby didn’t make it; no other trisomy is compatible with life. That is a tragedy. And people wonder if I’m angry or disappointed?! Huh?! Thank You, Hashem, that my baby’s genetic anomaly was two gene pairs over! What a miracle!
Batsheva Temima has changed our lives in so many wonderful ways. She has introduced us to the Down syndrome community, which is comprised of the most remarkable, gorgeous people. She has brought us to Shalva, a very special center in Jerusalem that offers services to children and adults with special needs, all free of charge. She has the most beautiful, placid, sweet nature—our first baby to actually sleep! She is growing, baruch Hashem, keeping up with the growth charts for “regular” babies.
Now that I am raising a special baby, I find myself thinking new thoughts. I find myself reexamining my role as a mother. What is my real mission in bringing children into this world? Is it solely to glorify myself through my children’s accomplishments? To see them stand out in sports or be the most popular kid in the class or bring home straight A’s? Or is it really in order to do Hashem’s will? Before Batsheva’s birth, I would cringe if someone dared call my child “average.” How do I feel now, when I have a child who, according to the textbooks, may even be “below average” in certain areas?
For a year before Batsheva was born, I continuously listened to the shiurim of Rabbi David Ashear during my daily morning walks. His lessons in emunah and bitachon have given me such chizzuk and now I see the truth in his assertion that one must strengthen their emunah “muscles” in order to be in good shape for the challenges that inevitably arise in life. In the case of our sweet Batsheva Temima, she is not a “challenge”; she is a brachah, and we are so grateful that she came to our family where we can appreciate her and love her for who she is. But it definitely helps to remember that everything is from Hashem and everything He does is good.
In our experience so far, what we need most in this process is patience. Batsheva’s progress is slow but steady. She is already holding up her head nicely and she’s getting faster at eating. She’s even begun smiling recently, which has us melting every time. This is just one of the many gifts of Down syndrome: realizing that the basic “little” things we tend to take for granted in life should not to be taken for granted and are definitely not so little!
It’s interesting to see how there is a lot of negativity associated with Down syndrome. Yesterday, the taxi driver who picked up Batsheva and I after our morning at the Shalva Center said to me, “What sin did this baby do to deserve to be born that way?” (I thought I had a thick skin beforehand, especially as a writer, but this new journey is giving me a really thick skin!)
I said, “I’m not sure what you’re asking. Down syndrome isn’t a punishment! It’s a gift! This baby will be happier than you or I will ever be. She will live a wonderful, full life, b’ezras Hashem, and accomplish great things! She is gorgeous and loved and precious! Take a look at her!”
He was visibly moved when he gazed at her peacefully sleeping face.
“Ashrayich,” he said, which is the Hebrew equivalent of “Good for you!”
One Erev Shabbos, when Batsheva was just a month old, a young woman who seemed to have a disability of her own, perhaps Asperger’s syndrome, knocked on our door, collecting money for her family. All at once, she spotted our new baby.
“Is she normal?” she asked, very bluntly.
I was struck by the young woman’s question. Not offended, just intrigued. Is my little Batsheva Temima “normal”? And what does it mean if she is not?
Our society is continuously obsessed by the need to be “normal.” My husband, a psychologist, is constantly asked, “Is this behavior ‘normal’?” Our greatest fear, it seems, is to be discovered as not being “normal.” There is such apparent safety in normalcy; no one wants to put one big toe out of the boundaries of normal, for fear of being shunned. But if we deconstruct the phenomenon, I think we may find that “normal” is a straw man, a completely made-up ideal. My three-year-old has the vocabulary of a 30-year-old and her intuition and emotional IQ are off the charts. Is she “normal”? Totally not!
I am the only woman on my block who’s a writer and publishes books. I also have a penchant for wearing hairbands with large flowers perched on top of my sheitel. Am I “normal”? Not really.
How do we even begin to define the term? Are any of us truly “normal”? How could we possibly be “normal” when we are all so different, all so multi-hued and complex? Can anyone really show us Mr. or Mrs. Normal, hold them high like some kind of measurable, tangible yardstick so we can finally compare ourselves and see if we do, in fact, fit the bill? My exploration of constructs like these, prompted by Batsheva Temima’s arrival, has broadened my view and certainly influenced my perspective.
I know that what the woman was trying to figure out was: does this baby belong? In essence, as human beings, that is what we are striving to discern: do I belong to the greater society? Am I connected intimately with the people around me? To be an outsider is devastating. This is why we all want to blend in and this is probably why Down syndrome seems threatening. It is different, one in 700, to be statistically precise. And yet, Batsheva’s similarities to “regular” people greatly outweigh the differences. She definitely belongs. In our family, for sure, but in the community as well. Her capabilities and potential are as great as any other child, perhaps even greater because of her limitations, not in spite of them.
“Is she really us?” I asked my husband one day, early on, while caressing Batsheva’s soft hair. People who are created with Down syndrome have an extra 21st chromosome; instead of two chromosomes, they have three, which led me to muse about whether “genetically” Batsheva is really like my husband and I. “Of course!” Joel said with a grin. “Batsheva is definitely us—plus!” And how true that is!
I recently wrote another letter to Rav Chaim Kanievsky, thanking him for the beautiful brachah and sharing that we had named our baby Batsheva in honor of the Rebbetzin, a”h. I received another heart-warming brachah in return, along with some astonishing words. “The Rav, shlita, says,” wrote Rav Chaim’s daughter, “That a child like this [with Down syndrome] in the house is a kamei’a [protective amulet] in the house.”
Our Batsheva is one of the best things that has ever happened to our family. As I told my friends at the gala kiddush we held in her honor, this baby will teach us way more than we could ever possibly teach her. We will raise Batsheva Temima as we try to raise all of our wonderful children—to reach her full potential while believing in her, supporting her and loving her like crazy. We are so incredibly thankful to the Ribbono Shel Olam that he chose us, out of all the other families in the world, to receive this baby, and we are humbled by His kindness. Today, I celebrate with you the birth of our special Batsheva Temima, and may we continue to celebrate many more simchahs in klal Yisrael!
And don’t you think her almond-shaped eyes are just so beautiful?