Written on February 22, 2011
It has been almost three years to the day Zane was diagnosed with Eosinophilic Esophagitis. I spent the last two and a half of those years living in fear. Initially, I feared Zane would be allergic to all foods. A few months after his diagnosis we learned he is, in fact, allergic to everything. Then I feared he would never outgrow those allergies. I feared my daughter would also have the disease. I feared the disease would spread. One of my biggest fears, however, was that Zane would have to be fed through a feeding tube. I previously wrote that a feeding tube might be the one thing that “puts me over the edge.”
About forty minutes ago, I kissed Zane goodbye so he could undergo his fourth surgery and his fourteenth endoscopy. When he returns to me he will have his peg and I will have to learn how to administer his feeds five times a day through his tube. I will have to learn how to clean it and care for it. I will have to learn to deal with the comments and/or ignorance from others. Although, Zane hasn’t come back from surgery yet, I am here to tell you that there is life after the tube. It was a long road for me to get here. It was a long process to be okay with this decision. But, I finally am and it is so liberating.
At Zane’s weight in on February 21st he weighed 15.6 kilos (34.95 lbs) with his clothes on. When we were last here in Switzerland in November of 2010, Zane weighed 17.9 kilos (39.38 lbs) with his clothing off. So, he lost quite a bit of weight. But, it wasn’t a rapid weight loss – it was a long and agonizing process. One which created a lot of tension between Zane and I because I was constantly nagging him to drink his formula and eat some food and he constantly refused. His hunger slowly turned into starvation.
In the early 80s my father glued himself to the television news for weeks to watch hundreds of thousands of Ethiopians die of a famine of “Biblical” proportions, as one BBC reporter famously explained it. I remember one scene quite vividly. Huge flat bed trucks arrived in one refugee village to deliver bags of wheat emboldened with the American flag. Ethiopians flocked to them to receive their share of wheat. They quickly became aggressive and two Ethiopians began to fight over the same bag. Each person pulled on the opposite end of the bag until it tore in half and wheat flew everywhere. Other Ethiopians quickly flung themselves to the ground to collect what had fallen. I remember watching thinking that they were acting like complete savages. But, now I know better.
Hunger is quite a powerful human feeling. It is persistent and nagging. It will rumble in your stomach unabated with determination until it is fully satisfied. It is enough to drive a person mad. Our basic animal instincts kick in and you will do anything or eat anything to survive. I’ve seen it in Zane. He spent nearly a year on an elemental only diet. He begged for food. At a park once, he spotted a kid with a bag of popcorn. Zane’s stare immediately locked in on the bag. He ran straight for the boy and took him down with one quick unsuspecting blow to get to the popcorn. The boy fell to the ground and was immediately stunned into compliance. He was merely collateral damage. The elemental only diet was too strict and harsh for me to maintain. I wasn’t strong enough to watch my son crave food every minute of his life until it became his one and only obsession. So, I gave up.
This time it was Zane who gave up. It started in November when he stopped drinking his Neocate Splash. Then by January he stopped drinking his Elecare. By mid-January he was eating less and less food. It was a gradual starvation until he would go a whole day without food and would only drink a few sips here and there of his nasty, foul-tasting formula. He was so tired of it that he would gag at the site or smell of the Elecare. Initially, he was just a bit crabby. Then he gradually became a bit more aggressive and unpredictable. He was angry and frequently lashed out. Some days he would spontaneously combust into the most horrible tantrums lasting hours until he just fell asleep from exhaustion. A few days before coming to Switzerland he became lethargic. He didn’t want to play as much and would fall asleep in odd places at odd times. When he wasn’t sleeping you never knew what would set off the next big melt down. One night he asked for rice pasta with salt and butter. I handed it to him on his favorite blue plate.
“That’s not what I wanted,” he yelled through tears.
“Tell me what you want, Zane,” I said.
But once the dam broke there was no holding back the deluge. He would go from unwanted pasta to hating school to no longer liking to wear a particular shirt. His thoughts and emotions were random and scattered. That is what hunger does to you. You can’t think straight anymore. Imagine having a small itch that can never be scratched. It starts off small but if you don’t scratch it, it eventually takes on a life of its own. That is what hunger is to Zane and others who suffer from eosinophilic gastro-intestinal disorders. So, an intervention was desperately needed.
So, here I am . . . taking on what was totally unthinkable only three years ago. It highlights the strange dichotomy that exists when dealing with a chronic illness. On the one hand, you have to constantly battle with the disease while also learning to live with it and accept it for what it is. I’m trying my best to be strong and accept things. I am also trying not to fear what hasn’t or might not even happen.
It has been a few days after surgery now. It will take a month and a half for Zane to gain back the weight he lost. I already see him returning to the kid he was before hunger took over his body. For the first time in his short little life he is no longer hungry. He actually feels full. His energy level is slowly coming back. He smiles more and jokes about silly things only four year old boys think are funny.
“Mommy, look, I can eat two things at the same time,” he said as he ate a rice cake while the nurse administered his feed.
That’s my boy.