FST: Our Family’s Own Operation Smile
My sister was born with a cleft lip. When I think of her as a baby I always picture her with the cleft lip, and even though I knew at the time that it was a deformity, a part of me thought that it was super cute. Maybe I was just being subconsciously defensive, because I knew people stared at her for it. I don’t know. However, the reality was that it wasn’t something she could just indefinitely live with. It was really hard to feed her. I can remember mom getting frustrated and upset, even crying sometimes. I remember my sister being fussy every time she had to eat. It was a battle: Mom vs Food.
“I’m going to feed the baby,” she’d say to me. That was code for ‘keep your brother occupied so that I can focus’ or ‘get ready to distract her so I can hold the food in’.
The reason it wasn’t fixed right away isn’t that important, but it’s the usual reason – no money and no health insurance. She was born in a birthing home, not in a hospital and they didn’t have the resources to just whisk her away and fix things. Weeks turned into months, and pretty soon my sister was well past the age that most Western babies are when they have this kind of serious deformity fixed.
This turned out to be a sort of blessing. There was a very well-respected Shriner’s hospital in our area that happened to specialize in cleft-lip and cleft-palate surgery. One of the doctor’s had pioneered a new type of surgery, but he needed older babies to teach other doctors how to do it. He couldn’t use infants for this type of teaching surgery and my sister was the perfect age. They offered to do her surgery for free so that he could teach it.
I have only a vague memory of the actual surgery. I remember dad came to the hospital with us, which made it a Big Deal, because he took off work and that just didn’t happen. I remember he was really nervous, and that made me nervous because dad’s don’t get nervous. And then it was done and we could go in and see her. She was miserable. Miserable, sad baby sister. She wanted to go home, but we had to leave her at the end of the day and she cried and cried and cried.
The next week or so became a ritual. It was different from our usual daily routine, so I was pretty excited by it all. My mom would haul a toddler and an almost five-year old with all their gear, packed lunches, and clean clothes for the baby onto a public bus, through one of the worst neighborhoods in downtown Portland. When we got to the hospital mom would talk to doctors and check on our sister, while we played with the other kids in the hospital.
Since we’d be there pretty much all day, my brother and I made a friend. She was a little younger than me and I understand now that she had a bone cancer of some kind. She was bald, but I was too young to really understand what that meant. My mom kept telling me that she was very sick, but at first she didn’t seem sick. Some days she couldn’t play, though. Then one of the last days that we went to visit the hospital, my brother and I couldn’t find her. I asked the nurse where she was, and the nurse made a very sad face and said she wasn’t there. I thought that was weird because that meant she had gotten better. Why was the nurse sad? Mom sat down next to my brother and me and explained that she had gone to heaven.
It was my first experience with death. For most kids their first experience is with someone old, like a grandparent. For my brother and I, it was a girl our age. My brother has an intense fear of hospital’s, to the point that they make him physically ill. I feel confident this is the reason why and frankly, it’s a miracle I don’t share this fear. Maybe being a year older saved me from that. However, all of a sudden, it wasn’t fun to visit the hospital anymore and I wanted my baby sister out of there and home with us immediately. I wasn’t quite sure that the same thing wasn’t going to happen to her. My mom assured us that wasn’t the case, but I worried she was lying to us to make us feel better. When Sister finally came home, I was intensely relieved to have her back with us.
After she got home, Sister could eat well, mom was happier, and there was a lot less guilt. As we got older, anytime we saw a Shriner, whether it was on a tricycle in a parade or anywhere else, our mother would point at them and say “They saved your sister.” Even now, when a parade is on I look for the Shriner’s in their silly hats and mentally thank them.
It should come as no surprise that my sister is a big fan of Operation Smile. Without a free surgery to fix her cleft lip, who knows how long she would have had to live with it. She feels pretty passionately about helping other children have the same opportunity that she had. She’s currently raising money to help eight babies have the life-saving surgery. I’m only too happy to help her with that.
I believe this is the first time in nine years of blogging that I’ve asked for donations, but it’s a really personal cause for my family. I would really appreciate it if anyone took the time to help her reach her new goal. She’s really not asking for much.