Life’s Not a Bowl of Cherries…

I remember driving to work, around the time I wrote, “Killing Me Softly With His Song”, about Dear Son’s fading away. I could always tell overall how Dear Son was doing, by the drive to work. I would start out the same, with the radio on and then at some point a song would come on the radio and I would suddenly be transported, where I would spend of the rest of the drive thinking about Dear Son, his life fading away, his body worn out, as if he were an old man who used the best days of his life in hard labor and is now paying the price.

I worried about his birthday coming up, on November 12th and what I should do. Typically, I’d send a cake to school where they could celebrate his birthday with the class. This would always excite Dear Son since I would have a cake made to send to school. The cake would typically be a yellow cake with buttercream frosting, because Dear Son didn’t like chocolate cake or chocolate anything. To be quite honest, he never even liked cake, he just liked the party. Typically, on his birthday, he might indulge in a bite of cake, provided it had some ice cream on it, for the festivities. More often than not, he would just wallow in the glory when everyone sang “Happy Birthday” to him smiling ear to ear, with his eyes lit up, fully basking in the attention and soaking up all of the energy in the room, like a sponge.

I had been thinking about doing that this year, but worried about the feeding tube. Dear Son has been on g-tube feeds since June, getting his six cans of Pedia Sure and two cans of water every day for months now. On occasion, I’ll indulge him and try to feed him a meal, that’s about as close to pureed as you can get. It will typically be a favorite meal of his and on a day when it’s cold, when I think he needs a hot meal to warm his belly or when I am weak, typically on a weekend, when I can’t stand cooking in the house, letting him smell the food and then not feeding him a real meal. On those days, I’ll set a tablecloth on the table and make a really nice meal. Dear Son will smile and get all excited as I wheel his chair up to the table and then promptly take his head and try to mash it in the food on the plate, a sign that means to “hurry up” and get the food into his mouth. It will seem like a good idea until he chokes a bit and then the experiment is aborted and I resolve never again to try it. Dear Son will lean over at the end of the meal and kiss me on the hand several times, to show his appreciation for real food. It’s a stern reminder that he has not forgotten his mother’s home cooked meals and that feeding through the g-tube doesn’t cut it. Overall, I have adjusted to the fact that he can’t eat real food anymore and the occasional meal is pretty much history.

The emotional turmoil goes on however. Would it be mean to send a birthday cake to school that he can’t eat? I decide in the end that he doesn’t even like cake but the birthday party and his classmates singing, “Happy Birthday” will do more for his morale. I send the cake to school. The party is a huge success and it does more for his morale than anything else I could do.

Fast forward to Christmas Day. We are invited to Christmas lunch at his paternal Grandma’s house. Christmas lunch on the holidays are a big deal over there. Typically, Grandma and her daughter make all of the main courses, her son’s in charge of mashing the potatoes, her daughter-in-law is in charge of desserts. We eat around 2 p.m. Dear Son loves having everyone around and especially loves it when he gets to eat at the big table with everyone.

But this year is different. Dear Son has a feeding tube and isn’t supposed to eat real food. I tell Dear Son the day before that he gets to eat Christmas dinner. He smiles when I tell him. Christmas day arrives and he’s sleeps through our lunch. Around 3:00 p.m., he’s awake and people are eating dessert so I have his aunt bring him a small bowl/scoop of ice cream. She arrives with the bowl and he looks her in the eye and says, “I love you”. Now, Dear Son doesn’t speak but on occasion a word or two slips out. Most of the time it is unintelligible to the average person, as it was that day, but I know what it means. So he eats his ice cream and is thrilled.

Dinner arrives and I chop up his dinner and feed him a real meal. He eats far less than he used to, but still enjoys the meal and thankfully doesn’t choke. He kisses me three times on the hand at the end. As I am cleaning up the table, I begin to think about these feedings. We get so used to doing what we need to do to make things safe or to save these kids, but really, how great is that? I am sure most doctors and other medical professionals see kids eat via a feeding tube all the time and after a while, they must think, “this is the way it is”. But getting used to something, doesn’t always make it right. I understand why he can’t eat by mouth anymore, but sometimes, you have to break the rules. I mean, when was the last time you said, “I love you”, to thank someone for a bowl of ice cream. Life isn’t a bowl of cherries but sometimes love is a bowl of ice cream.