Wednesday, December 21, 2011

Ordinary Moms

          Our loft is finally beginning to look like Christmas. The UPS man delivered our new fake tree today while I was at work. Steve, the guy who runs the nutrition store below us, receives our packages when we're not at home, and he had 4 large boxes waiting for me. We loaded everything up on his handtruck, and dumped it all off in the foyer. After I finished a good sweaty workout, I carried the 40 pound boxed tree upstairs, and began the two hour process of assembling it. The tree that was supposed to have gone up the night before last, the one that was missing its stand when we took it out of the box, for which Nan from Lowe's found a replacement stand and only charged us two dollars, experienced a permanent fatal error. One strand of lights just wouldn't work. We replaced fuses and mini fuses and finally, changed out every single light in that damn strand, and still nothing. It was so disappointing. I considered running over to Michael's to get a couple of strings of lights to weave through the tree, but just couldn't gather the energy to deal with the holiday rush I knew awaited me in there. So, I went online and ordered another tree, paying $64.99 extra for two day shipping. It's always something.
     I collect Santa Clauses, and this afternoon, I set them all out on top of my piano. There are probably about 75 of them; some are round, some are tall, some are whimsical, and one of them is riding a unicycle. It's the one my sister, Emi, gave me many years ago, when our boys were all tiny tots. Although I'm two years older than she is, she got married four months before I did, and had her first child three months before my boys were born; she was sort of a trailblazer. It was amazing to watch her breastfeeding Alex, and I couldn't wait for my own twin boys to arrive.
     A few months later, the boys did arrive, and they were eight weeks premature. I had gone into preterm labor, the result of Listeria sepsis, a type of food-borne illness that can cause devastating meningitis in newborns. Luckily, the boys didn't suffer that complication, but they did end up on ventilators because their lungs were immature. Nick and Rory stayed in the NICU for several weeks. They were receiving breast milk and Pregestimil though a feeding tube, but they were both failing to thrive. Nick's poop turned white, precipitating a surgical consult and discussion of a liver transplant for presumed biliary atresia. Naturally, my husband and I were terrified.  Several days later, Nick underwent an operative cholangiogram, and afterward, we were told he probably had cystic fibrosis. The boys were sweat-tested once they reached eight pounds, and both were diagnosed with CF on Halloween of 1990, when they were just three months old.
     The next couple of months were exhausting. The boys were always hungry, and I nursed them every two hours. We had to feed them pancreatic enzymes mixed in rice cereal to help them digest my breast milk. They cried incessantly and didn't sleep through the night. Sometimes, I really thought I was going crazy. I would put them down for a nap in the afternoons, and then I would fix myself a giant bowl of peppermint ice cream with hot fudge sauce and marshmallow topping. I'd  sit on the carpet, watch soap operas and cry. I felt sorry for myself, and it all just seemed so unfair. More than anything else, I had wanted to be someone's mom. I was ecstatic when I found out I was pregnant, especially because Emi was also pregnant. We read "What To Expect When You're Expecting" together and compared notes. I went to her baby shower, and she organized one for me. When Nick and Rory were still in the NICU, I would watch with envy as she nursed Alex, a big chunky toddler of an infant who weighed 10 pounds 4 ounces at birth. When the boys finally came home, Emi would bring Alex over, and we'd sit on a quilt on the floor, feeding and playing with all three of them, as if we were ordinary moms, and I'd marvel at how giant Alex seemed in comparison to my tiny boys. I'd sometimes think guiltily to myself that Emi really had it easy.
      I have a vivid memory from that first Christmas, where I was trying to bake some cookies, and the boys just wouldn't stop crying. I had them, tummy down, on a big Danish modern sofa in the living room, right next to the kitchen, and I was trying to pipe icing onto gingerbread men while they napped. Their naps only seemed to last a few minutes, and in the midst of the cookie-decorating, they woke up, screaming. This was around the time "thirtysomething" was popular on TV. In my mind, I had this idea that life was supposed to be just like it was on that show, where all the characters had perfect, healthy children, and they had perfect yuppie lives. My own life seemed so abnormal. I wasn't doing normal "mommy" things; instead, I was feeding my kids pancreatic enzymes, giving them breathing treatments and doing "pitty pats" (chest percussion to loosen up the mucus in their lungs). Every day seemed like an insurmountable chore, and I was depressed. I was deeply afraid of outliving my own children. Attempting to comfort me, Mom used to tell me "By the time Nick and Rory turn eighteen, they won't cry like this anymore!", but I couldn't picture that day ever getting here. I had to get away from the crying for just a few moments. I checked to see that the boys were secured on the sofa with big pillows around them, and walked outside to the mailbox. In those days, walking to the mailbox was a pretty big deal; it was the only "me" time I had. I stood out there, breathing in the cold grey December air, trying to imagine what my life would be like on this same day, eighteen years in the future.
     Seeing Unicycle Santa reminded me of that Christmastime so long ago, when each day seemed eternal.  It is now 21 years later, and Nick and Rory have experienced remarkably good health. They both work, they both are excellent musicians, and they have wonderful, supportive friends and girlfriends who make sure they do their respiratory treatments and take their enzymes. They really aren't too much different from other young men, living life in the big city. Emi's boys are also grown up, and this is her first Christmas as an empty-nester. Reflecting back on the days when our boys were small, and Nick and Rory were so sick, I realize that Emi didn't have it easy at all. Not only was she a new mom taking care of Alex, she was doing everything she possibly could to give me moments where I felt like we were just two ordinary moms, enjoying our children together. Where I couldn't see the light at the end of the tunnel, she was there, leading the way.  What she gave me was the gift of her own hope, her vision of a future with a little bit of normalcy, and the courage to keep loving Nick and Rory by abandoning my fears and making life fun for them, by letting them be boys.


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