I feel like my previous entries have been thoughtful and reflective, and admittedly, very therapeutic for me. This one is a little rough around the edges. It’s more of a rant. A bratty, selfish tirade. I hate the medication part of GAMT.
There are several different ways to treat GAMT deficiency. The method that we have chosen and that has worked best for our children involves a metabolic formula and two different supplements, supplements that have become medications for them, fixing the imbalances that GAMT creates. But it’s not that simple. We need to measure these formulas every day, and mix them with juice, and send them to school, and bring them to family functions, and bring them to vacations. And we need expensive scales to measure their medications down to the tenth of a gram, and syringes, g-tube supplies, and bowls in which to mix them. Each child needs this three times a day. And don’t forget the cans and sachets and bins of powders delivered to our house throughout the month. (I often wonder what the neighbors think when they see unmarked cars—couriers from our durable medical supply company—delivering boxes of who-knows-what late at night. I secretly hope they’ve fabricated in their heads a very exciting life behind our closed doors. An exciting life that needs secret packages delivered by unmarked cars.)
I’m just being obnoxious and ungrateful. But sometimes I just want to rant.
An entire portion of my counter is dedicated to scales, syringes, medical tubing, bowls of measured medication, and more. Some of you reading this may have had the misfortune of seeing it. White powder fills cracks and crevices. Sometimes the powder explodes all over the floor. Sometimes the formula spills on my clothes. And believe me, it smells horrible and it’s sticky.
Our basement closet stores monthly deliveries of formula, g-tube supplies, syringes, various powders, and medical food. Yes, medical food. That’s a thing.
And God forbid we want to travel anywhere. We take the show on the road. Duffel bags of supplies, cans, powders, and scales piled next to our suitcases in the trunk. Hotel sinks and counters become makeshift labs where we measure, mix, wash supplies. We have yet to fly with all this stuff, but I can only imagine what might happen with TSA. “Yes, sir, these are my gram scales and white powder. Is there a problem?”
I have dreams of whisking the children away at the drop of a hat. Total spontaneity. We quickly pile into the car, laughing and talking about all the spontaneous fun we’re about to have. But wait, let me gather a bag of medications, syringes, tubes, cups of formula, ice packs to keep said formula cool in a thermal bag. (One likes his formula cold, the other prefers her formula warmed up. No kidding.) Bag packed; now, on to the spontaneous fun! Oh wait, we can’t leave yet, the children haven’t had their morning doses yet. Spontaneity is overrated, I’ll bet.
We don’t often leave the children with a caretaker for longer than 24 hours. My husband and I always joke that it’s a good thing we all really like each other. We spend a lot of time together. The medication and formula making and administering is confusing, and not everyone is trained to administer medication through a g-tube. We don’t like to burden others. We have left the kids a few times for more than 24 hours and we try to do as much ahead of time as possible. That makes for piles of multiple daily doses for two kids. And then there are numerous texts and phone calls to and from kindhearted, amazing grandparents to confirm who gets what and when. I have a laminator and I’m not afraid to use it. I have made laminated, detailed schedules and provided dry erase markers for caretakers.
Much of our day is spent dealing with this process. We have it down to a science now, but it still wears on me. I really hate it. But I have to keep on schedule—it’s their health. And as I rant, I feel guilty because I’m not even the one who has to take the medication. But I feel it’s a necessary part to parenting. We allow ourselves to rant and to feel pity. We allow ourselves to vent and act obnoxious.
We all have our issues and our moments that merit a good tirade. But here’s my rule: As long as we don’t dwell too long or forget perspective and gratitude, we can rant in a productive way.
I said I was going to rant. And I did. I already feel better.
I have to go now. Someone needs medication.