But it’s just that — a boo-boo—she reiterated to them. “The doctors are going to fix him, b’ezras Hashem”
While my husband and I had months to process the news of Akiva’s condition, our friends and family had only days. I’m so grateful for how quickly and sensitively they adapted to the narrative. I’m not sure what they thought of his appearance, but at least adults know how to whisper.
Children, not so much.
Which is why my sister-in-law Nechama was worried about her upcoming visit with her kids. They would walk into our apartment, their arms laden with the handmade cards and little treats that they’d brought for the new baby, and then they’d take one look at him and voice all their questions. A new cousin — how exciting. But why does he so look so funny?
Nechama prepared her children before they left for our apartment. “You know how when you were a baby in Mommy’s tummy, a malach learned Torah with you? Well, Shoshana’s baby has such a heilige neshamah that he didn’t want to stop learning. He didn’t want to leave, so the malach had to give him a big shove to get him out. That’s how he got his boo-boo.”
But it’s just that — a boo-boo—she reiterated to them. “The doctors are going to fix him, b’ezras Hashem.”
The kids loved the explanation. It gave them a way to understand their different-looking cousin and it made them proud of having a special relative. (Actually, they loved it so much that when Nechama had a baby a few months later, they took one look and were disappointed. “Why is our baby not as special as Shoshana’s?” they asked.)
Nechama’s conversation wasn’t only an explanation for the kids. It was a comfort for me. I loved what she told them. It echoed “Neshomele,” by Abie Rotenberg, one of the songs my husband and I listened to on repeat. And it reminded me that every soul comes down with a purpose. Hashem blew a spark into him, packaged him as a special gift, and then sent him down to our family. Our little son, he has a unique mission of his own.
After that, I changed my refrain. Instead of saying, “Baruch Hashem, I had a healthy baby boy — but he has a cleft lip,” I used the word “and.”
Baruch Hashem, we were gifted this precious child and — no contradiction to how amazing and lovable he is — he has a cleft lip.
Still, even as I adapted my attitude, there were questions that kept me up at night and chased me throughout the day. What would life look like? How would we manage?
Feeding Akiva was an hours-long ordeal. Even when I was able to nurse him successfully, the food came out of his nose. He had a special bottle called a Haberman, which works based on pressure, instead of sucking, making it easier for kids with a cleft lip to feed.
Using the Haberman was a challenge. Squeeze the bottle to get the milk from the top to the bottom. Hold him upright so gravity would help him swallow. Clean up the mess that it always, always made. Whether with the bottle or nursing — I wasn’t ready to let go of that dream yet — each of Akiva’s feedings stretched on and on.
Between feedings, we rushed from one appointment to the next. Hearing, vision, heart — Akiva needed constant tests and monitoring to make sure no other conditions manifested. It was a hard few months.
However meaningful the intentions we attached to Akiva’s condition — a special guf, a special neshamah, a special family, a special purpose — it was still a condition. There were long nights and even longer days, because, despite my father’s joke when I’d initially called him sobbing about Akiva’s diagnosis, a cleft lip isn’t actually something that you can fix in a sewing machine.
to be continued…
(Originally featured in Family First, Issue 728)
Oops! We could not locate your form.