A Question of Feelings

[A note: I really wanted to make this blog post funny, but it didn’t want to come out that way. Some stories are like that.]

My younger son asked me a question that really struck me hard the other night. “Mom,” he said. “What did it feel like—you know, emotionally­—to have a baby that didn’t have all it’s parts?”

Wow. That question really laid it bare. What did it feel like?

To fill in a little background, my son was born with a congenital malformation of his hand and chest called Poland’s Syndrome. It’s really rare­—just one in about 30,000 babies born each year is diagnosed with it worldwide. It’s nowhere on the radar of scary stuff that you worry about when you’re pregnant. Heck, it’s not even on the radar of the doctors and specialists we went to for answers in the years after our birthing room surprise. It took us two and a half years to get a diagnosis even though our son could be a poster child for the condition.

So, how did it feel emotionally? The day he was born started with me nearly skipping into the maternity ward from my scheduled prenatal appointment. The baby was measuring over nine pounds, so they wanted to induce me. It was August, and a couple of days shaved off the end of my third trimester felt a little like an early Christmas. Unfortunately, my big bruiser of a baby was already just a little too big to make it out completely unscathed. A loud crack let me know that my little guy would have some healing to do as his broken clavicle mended in the weeks after he was born.

Then, when they placed him on my chest, I looked down and felt a jolt as he pushed his little left hand up toward my face. Something was clearly wrong. What was wrong with his hand? Was anything else wrong with him? Oh my god, what was wrong with my baby?

It took a while to convince the doctor that the baby didn’t just have his little hand in a fist. I saw my husband drop down to the floor with his head in his hands. My mother kept telling someone to turn off the video camera—a video I've still never brought myself to watch.

How did it feel? The initial wave of shock was followed by fear, wondering what was wrong with my little boy—not knowing if he was facing a lifetime of physical challenges. That was followed almost immediately by awkwardness, as friends and family shuffled into the room with painted smiles on their faces, cooing over his cuteness and remarking on how wonderful it was to have a new little man in our lives. I could tell that they didn’t know how to act, didn’t know what to say. What do you say in a moment like that?

Then we sank into an informational black hole, where answers and understanding were notable only by their absence. I’m an information junkie. I needed to know what had happened and why it had happened and whether I had done something that had caused it. Did I eat the wrong foods? Sleep too long on my back? Was it that fever I had back in December? And then there was the biggest question of all: What could I do to fix it?

We had to wait six weeks to see the pediatric orthopedist, and that was considered a short wait in the medical world—a favor to our pediatrician. I spent those weeks touching my baby’s little hand, feeling for bones that I was sure were just hiding under the skin, waiting for the miracle surgeon to reshape them into a normal hand.

The surgeon, unfortunately, was unaware that he was supposed to be my son’s salvation. We were a pretty routine, unimpressive case to him (and, frankly, the man had the bedside manner of a goat). There wasn’t much he could do, although he did eventually perform one small surgery to widen the web space and improve Caden’s grasp. When I asked him that first day if there were any support groups we could turn to, he told us we could head up to the children’s hospital, but that we’d feel stupid because our son’s hand was not a big deal. In hindsight, it turns out he was right, but it sure felt like a big deal at the time.

Weeks turned to months, and every single day brought the same questions from strangers. The checkers at the grocery store and the people walking by us at the mall would all turn to me and say, “Excuse me. Can I ask what happened to his hand?” I’m sure they thought they were being polite enough and that they were just expressing their curiosity, but every single time, I felt like that stranger was looking at me and saying, “Excuse me, but what the hell did you do wrong while you were pregnant?” And I’d look back and think, “Yeah, what the hell did I do wrong?”

I’d sit at home imagining snappy responses to the daily barrage of questions: “His hand? Holy crap! What happened to his other fingers? They were there when I left home!” or “Shark bite! Bit ‘em clean off.” But every day, instead, I’d shrink down inside myself and say, “I don’t know what happened. He was just born that way. He does great with both of his hands. He’ll be just fine.” One woman working in a nail salon actually responded back, “Well, he might be fine now, but when he grows up, he’s going to want fingers! If that happened to me, I’d kill myself!” I haven’t had my nails done since.

Eventually, though, two things happened that changed everything. The first was that we finally got a diagnosis. After years of pushing and questioning, I found a specialist intrigued enough to do some digging after we left his office. He called me three days later with the term “Poland’s Syndrome,” and it was like someone finally switched on a light in the room. Pair the name of anything—even something obscure and rare—with the power of the Internet, and suddenly you go from being all alone in a bizarre and unexpected reality to befriending moms in southern California and Europe and Australia who are all going through the same exact experience you are. Knowledge brought comfort and camaraderie and a measure of peace from the “what did I do” questions that had echoed through his early years.

The second and most profound thing that happened was that Caden became, well… Caden. First, he developed the most shockingly blue eyes I’d ever seen. Strangers would stop me on the street, not to ask about missing fingers, but to tell me how beautiful my son’s eyes were. As time passed, he also developed an incredibly buoyant, uncommonly confident personality to go with his baby blues. He has actually known people—both kids and adults—who had no idea he was missing parts even after being around him for months.

How does it feel these days? I’ve passed through shock and denial, self-blame and fierce protectiveness… and now? I think I’ve definitely reached acceptance. I honestly don’t think  much about his hand—or his chest, which will be a bigger deal when his muscles start developing—day-to-day any more, but I also can’t imagine him without it. His “lucky hand” is part of his uniqueness, so much a part of his quirky self-image that I can’t picture him with a boring old matched set. He’s got the personality to confidently whip out the “shark bite” quip with a laugh, and I know he’ll be the guy who wins bets in college about being able to put his whole hand in his mouth.

How did it feel—emotionally—to have a kid who was missing parts? It felt a lot like it feels to have any kid. You love them, and you hurt when they hurt. You growl like a mama bear when the world makes them sad, and you hope that their future holds every single possibility that could make them happy. When my kid scores a goal or wins an award at school, though, our high-fives are missing a couple of digits (“Gimme three! Woo hoo!”).

Postscript: Several years ago, after finally getting Caden’s diagnosis, we were traveling down to California to visit my sister and her family. We stopped at a restaurant to get everybody some food, and the waitress came by with an odd expression on her face. “Excuse me,” she said. “Can I ask you a question about his hand?” I remember smiling, feeling so much calmer that time because I knew I finally had some answers to share. “Sure, I said. What do you want to know?”

“I hate to ask,” she started. “It’s just… I just had a baby with a hand exactly like that, and I don’t know what happened or what else might be wrong with him. I’m just so worried and I don’t know what to do!”

You’d think I would have learned to expect the unexpected.