Friday, February 4, 2011

what we say and what we don't

   Hi there, y'all. I know, I know, I never write, I never call.

   I'm still kind of adrift, trying to figure out how to live with hope instead of a mystery. I'm irritated with myself. This is what we have wanted all along, why can't I be happy? I think it's because I'm afraid to "exhale" and have all of the progress Little Child has made over the past few months disappear. Poof! Your child is sick again.

   It's happened before.

   When Little Child was ten months old he made some really good progress, and even got to where he would drink his elemental formula from a bottle and eat baby food, just like a regular baby! For the better part of three months I didn't even have to use his g-tube (well, once, when he Coxsackie virus and a very sore throat, but I didn't count that), and then all of the bugs and allergen exposures from daycare caught up to him, he stopped eating orally, started losing weight (as opposed to just not GAINING any) and BAM! I had to quit my job, keep him home, and nurse him back to the health, but either some kind of damage was done or he began to realize eating was painful, and he's never taken in that much orally since.

   In recent months, we've fallen into a routine of giving Little Child his formula in the morning, sending him to kindergarten with a healthy snack, allowing him to eat what he will of the school lunch, and tanking him up again when he gets off the schoolbus. He then has dinner with the rest of the family, where he sits at the table and gets at least "a taste" of every dish (I really go back and forth on this, but the rule for my other children is "you don't have to EAT it but you do have to TASTE it" and I try not to give Little Child OR his brothers the impression that he is exempt from the household rules). Usually there is at least one thing he really enjoys and one or two more he doesn't hate, and he'll eat about as much as you'd expect a toddler to eat. It wouldn't be nearly enough if he wasn't still on his formula, but it's something! He's been able to stop taking Zofran, Miralax, and Prevacid on a daily basis and he's grown a lot!

   Last week, though, Little Child picked up a virus at school, and for the first time since the "big! Improvement!" his gastroparesis flared up. For the first part of this week, he was a mess. By which I mean he's only been able to tolerate small sips of fruit juice, complains of a sore throat and "frow-up coming up in my froat," can't eat orally without vomiting even if it's something he WANTS to eat, and is clearly struggling. He's mostly over the cough and cold of the orginal virus, but now his GI tract is in "screw you" mode and I'm worried. Will this be the end of the progress, and represent a permanent change in Little Child's baseline GI status? Will he have to be on daily meds around the clock again? Will I have to do all of the paperwork for the school to administer them, or should I just plan to pop over and do that myself in hopes that this IS, in fact, only temporary.

   My husband and I both worry, and we also both try to make "excuses." We already knew he'd always have a delicate stomach when he's sick, one of us will remind the other. It hasn't even been a week, give it time before you start to worry. This is what we say to each other instead of "I'm scared he's going back to being sick ALL the time" or "I know it's only been six days, but I'm really worried ALREADY." Even if this setback is permanent, I suppose we can always fall back on the old standard of there are worse things in life than eating via g-tube, this could be so much worse. And I guess if I'm totally honest, I'm not sure where I fit in anymore. Little Child's health issues are bad enough to make parents of only typically-developing children blanche, but I feel like a jerk if I tell a special-needs parent how worked up I am because really, this COULD be so much worse and I know that there are some of you who would give anything to have my problems right now.

   It still really hurts when my kid takes a sip of coconut-water, grimaces, and says "I don't like it very much and my froat hurts, but if it will help make me better I'll try to drink it" (I told him no, I could just put it in his tube, but that I was very proud of him for being willing to do what it takes to feel as good as he can). I don't know what to tell him about any of this; this is the first time he's been this bad and also this VERBAL, and he doesn't miss a thing. I can't tell him this WILL get better, but don't want to breathe a hint of "maybe it won't" in his hearing. He doesn't even complain about it, just comes to me and asks how long until he can have more "frow-up medicine" yet or whether he can have any medicine for his throat. He has questioned why he's on the Prevacid again, and I've told him that it's to try and help his stomach get over this cold. He hasn't yet asked me why this happens to HIM when HE gets a cold but not to anyone else, although I'm sure that one is coming. When he does ask, I'll just tell him that he was born a little different, and his body needs a little more help with things than his brothers' do, but that we'll do whatever it takes to help him feel better. It's not a lie, but it's also not the whole truth.

   The problem is, I don't know the "whole truth" about Little Child's medical problems, because some questions don't have clear answers except in hindsight. Nobody can tell us what to expect. Doctors don't know everything. Bad things happen to good people. Santa and the Tooth Fairy are...well, you get my point. I worry that this will lead to my sweet boy learning a lot more than any five-year-old ever should about life's hardest truths, and that he'll be less cheerful and happy-go-lucky, I tell myself that I need to think of a way to model GOOD handling of this crap for his sake, and then I worry some more because if my kids' ability to cope with this is dependent upon my own we uh...well, we may have a little problem there. Because while I know there are no points for style in this, and it's more a pass/fail grading system, I am afraid that I will fail in modeling acceptance of everything my kid has to deal with, because he doesn't deserve it and it sucks.

   And, you know, it hasn't even been a week. There are worse things in life than eating via g-tube. Etc.


MFA Mama keeps a personal blog where she writes about life with her bionic double organ-transplant recipient husband, two developmentally-delayed ADD superstars, and Little Child, a.k.a. "Tube Boy." She copes with it all through inappropriate humor and will consider the month of February to have been a raging success if everyone can stay out of the hospital and the looney bin.


  1. Oh, sweet boy. And sweet you.
    And I know your g-tube limbo, but listen: while, yes, there are worse things than eating via g-tube, that doesn't mean that this current state of things is rainbows and unicorns. It's okay to think that it sucks. I think it does.

  2. Please don't torture yourself with feeling you have no right to complain and feel dreadful about your circumstances and that of your son. Every family with a special needs child(ren) experiences their stresses in their own very special way. There is no ranking here, truly. A parent with a mildly aspergers kid has as much right to their grief, anger and fears as one with a deaf, blind and profoundly autistic one.
    You are so clearly a thoughtful caring parent, and that is what your child needs to get through this. I hear you putting a lot of pressure on yourself to be perfect, and want to tell you to let that go, cut yourself a break, let yourself be human. Your child doesn't need you to be perfect to make up for his body being imperfect. He needs your love and support and he clearly has that in spades. I hope this is just a temporary setback and that things get better with his G/I system soon. Hugs all around to you all.

  3. I echo and wholly support Varda's thoughtful and profound comments. Your child is most fortunate to have you as a parent. Take care of yourself!!