by Troy P. Foster
When we first learned that Henry couldn’t eat food, it was mostly sad for us. He was too young to really care. And, every time that he ate food, he became sick, lost wait, or ended up in the hospital. So, being no dummy, Henry couldn’t be bothered. He was more than satisfied “holding” some food or making an “experiment.” The experiments were very impressive pieces of art, and included every condiment imaginable. My favorite was a biscuit with tobasco, ketchup and mustard – topped with whipped cream, craisins, and oyster crackers. All in all, Henry really wasn’t phased by being limited to a feeding tube diet. Until lately.
In the last year, actually, Henry has grown more and more interested, and more and more persistent, in his desire to eat. We think that his interest peaked when his younger brother started eating solid foods. As a big brother, Henry wants to be able to do what Eli does. Everything.
Henry’s strength – in coping and dealing with his illness – translates, unfortunately, quite directly with his interest in eating. He has been relentless. Asking Kristen and I if he can “try something,” in the sweetest of voices – over and over. His initial requests were met with unequivocal denials. Soon, we found him in the closet with a mouth full of Oreos, chocolate lining his lips. Or, that a handful of crackers that he just wanted to hold – would suddenly and inexplicably disappear. The dogs caught a lot of heat, as did Henry’s siblings – all of them.
In the months that followed, Kristen was the first to break. I learned, indirectly, when the oldest kids, our self-appointed informants of everything, told me that she had let Henry have a bite of coffee cake from Starbucks. Then Henry, not doing himself any favors, started suggesting that he and Kristen head to Starbucks alone. Neither the snitches nor Henry knew that Kristen and I had already talked about her slip, which made her “the” target for all of Henry’s pleas.
I didn’t want to cave. Henry was allergic to all of these foods. And, letting him eat them would cause, without question, long term damage to his gastrointestinal track. It also significantly increased his chances of developing stomach cancer. But, as his birthday approached, his requests came at both of us. They were non-stop. He is good, and though his persistence is tiresome, it sure makes me happy to see given what he faces every day.
So, on his birthday, I too fell. Truth be told, he doesn’t really want to eat much – a couple of bites is more than enough. He wants to be able to say that he’s eating and to taste different things. On the day he turned 4, he had exactly two bites of cake. We, of course, let him brag about how much cake and ice cream he ate.
A few weeks later, we were at the Children’s Hospital to have Henry see the psychologist. He has been asking about things a four-year old should never ask, or at least should never be relevant for such a young guy. And, the program requires participation in therapy, which is terrific.
We shared our lapses with the psychologist. I had expected a brief scolding, a reminder of the ramifications for Henry, and suggestion that we work with our therapists about our issues in not letting him eat. But, not even close. Dr. Mellon (hilarious and ironic) because Henry asks if he can eat him, shared something different. He asked us whether we thought letting Henry try foods once a week or once every two weeks would increase the quality of his life. That, if he doesn’t get sick outwardly with those infrequent “tries,” maybe we could forget about the long-term affects. What? I think that I would have preferred to have the conversation that I anticipated. For me, Dr. Mellon was asking us to accept that long-term is not likely in the cards. In his office, it felt like giving up. And, we won’t do that.
When we talked privately, Kristen had a better take on it – as usual. Team Foster is not giving up, and we’ll keep fighting. But, if he can enjoy the ceremony around trying something every week or every other week, it would mean so much to him. And, on balance, if we have to deal with a higher risk of cancer or damage to his GI system, we will. We hope to have to worry about those long-term issues, but can live like it. Holding onto that for ourselves, it seemed to me, was very selfish.
So, that week, we began his “taste testing.” If Henry sits at the meal table and doesn’t beg for food during the day, he got a point. After seven points, Henry gets to try something. We let him “redeem” his points on the weekend – so that we could make a very big deal out of it. And, we did. All of the kids played a role, offering their favorite suggestions for Henry’s next adventure. Henry was so pleased, and only went one day without earning a point.
It was a living life in the moment lesson that we embraced. Something two first-born, conservative parents would never do on their own. It was worth it.
Until, Henry started getting sick. Even with the small amounts of food that he was exposed to, very infrequently, he started getting sick this week. We have stopped the taste testing, and are sure that he’ll get back on track with his pure formula diet.
He knows why we’ve stopped; he doesn’t like being sick. And we’ve modified that rewards to little toys or choice of movie. Henry is on board with that, but his heart just isn’t in it. Of course, that’s hard for us to see. Henry still holds out hope though. Two days ago, he asked me if I could “magic it so that he could eat any food.” (The kids think that I am magic – whole different story.) When I told him that I couldn’t, and expected to have to explain that I don’t have super powers and talk more about him not being able to eat, Henry interrupted me and said “Oh Daddy, I’m sorry. Tell me when your magic gets stronger.”
He’s still a believer. Magic, miracles, and things that just make us laugh. He helps us believe in that every day. Despite our failed experiment!
