What did you get into trouble for the most when you were a kid?
It's been a long time since I was a kid, and when we say a kid does that mean when I was five, which I barely remember? Or is it sixteen because I was still a minor? I remember sixteen a lot better than five.
Honestly, I wasn't really a trouble maker growing up. The biggest problem that I faced was when I was fatigued. Looking back and being the mother of two children with mitochondrial disease, I understand myself so much better.
See, I didn't know I had mito when I was younger. Neither did my parents. Mitochondria make almost all the energy your cells need to sustain life. That's a pretty important job.
In mito, they aren't working very efficiently. Think of them as a cell phone battery that has charged overnight, but still doesn't have a full charge. You thought it was going to be full, but the power was out half the night, so it didn't charge. A lot of people with mito have sleep disorders because the mitochondria in the brain, lungs, and muscles aren't making enough energy to allow them to breathe. Or maybe the heart can't seem to circulate the blood well enough, and their oxygen sats drop, their blood pressure so low it can't even be measured. Maybe they just have nightmares, toss and turn. Or they don't enter REM sleep as they should. Some have periodic limb movement disorder and/or restless leg syndrome.
So, the next morning, instead of waking up with a full battery, they are already at fifty percent. They're sluggish and tired from having to work so hard during their "rest". I don't remember ever being a huge morning person. In fact, many days, I'd stay home from school because my stomach would hurt in the morning really bad. I'd feel very nauseated and tired. But by noon, after I'd had some food and actual rest, not sleeping because that was more like work, I'd feel a little better. Then, people would accuse me of playing hooky to miss school. That happened a lot.
It happened when I played sports too. The heat was really hard on me.
One night when I was maybe five, I wanted to bat at my tee-ball game, but I didn't feel good. My mom told me if I was going to bat, I had to play an inning in the out field first. They thought I was just being lazy, that I liked batting but hated the out field. Okay. I did hate the out field. It was boring. Rarely did someone hit the ball that far in tee-ball. And I had undiagnosed ADHD. Sometimes, I'd spin around out there. Sometimes I sat down and played with the grass because my legs would get tired.
But I wanted to bat, so I agreed. Then, a few minutes after being out there, I started throwing up. My doctor was my coach, and he got on to my mom for bringing me while I was sick. The reality is, I didn't have anything contagious. It was just me.
I got "stomach viruses" no one caught all the time. Usually, once I got IV fluids, I'd be fine. I know why now. But then, we didn't. It happened if I was really tired. When I graduated high school, I went to a lock in where we stayed up all night. I remember getting a doughnut and orange juice as I was leaving, driving home feeling like I was going to die, and walking into the house and immediately being sick. I dry heaved for two days before my mom took me to the hospital. As soon as they started my IV, I quit retching, and I was able to keep Gatorade down. My miracle drug is IV fluids. For my kids too. I know that now, but we didn't know that then. They would just say, "Oh, she must have been at the end of her virus."
Back to when I was five, my parents took me to Disney World. My siblings stayed behind because I think they were relieved to have a break from me. I came across as a whiny brat a lot. But the reality was that, at five, I was tired all the time. And I had no idea why. I've watched both of my kids go through the same phase I did. Terrors. No punishment strong enough. Screaming, fighting, demon child.
And I know you're probably thinking, if you have no energy then how did you fight? I don't know. It's like a delirious type of behavior that spirals when the brain is so exhausted.
I can rationalize it, but what happens when a five year old is really tired, doesn't feel good all the time, and doesn't understand? They freak the heck out.
There's a picture of me at Disney of my dad holding me like he's about to throw me in a fountain. We're smiling, but what happened leading up to that was a very whiny Brandi who was about to have a meltdown in the middle of Disney. I'd been crying, been grumpy that my legs were tired and that I was too hot. I remember this well. Like it was yesterday. He picked me up and acted like he was going to throw me in the fountain to cool me off in an effort to diffuse the situation.
Knowing mitochondrial disease, I understand. Now, I think they do too. My body doesn't regulate body temperature like it should. I don't sweat enough, so I can't cool myself down naturally. Leg pain, muscle cramping, is very common with mito, especially in the heat. Summer. Is. Hard. Both my children use wheelchairs for long distances. They can barely be outside in the summer without being wet.
Looking back, I wonder what my vacations would have been like if we'd known how to handle my medical condition. What my life would have been like? I can assure you, I would have been in a lot less "trouble". I would have had less meltdowns, temper tantrums because we would have known how to support me. Although, I think it would have been impossible to stop them completely. I knew with my kids, and they both went through that. They still do when they are over-fatigued.
But regardless, what I went through just made me stronger. If I'd known I had mito, I would have never had kids. We found out at the end of January 2009, that Noah's condition was genetic. By March 2009, Chad had undergone a vasectomy.
Those hard times through my childhood prepared me to be the mother my kids need me to be, to empathize with them and understand what it's like to be them. I get it. In fact, no one probably gets it better than I do because of what I went through.
More than anything, I spent the majority of my life not being believed that my condition was real. I was called lazy and a hypochondriac. I have no tolerance for that with my children. It's important for them to know I believe what they are feeling is real to them.
Most of the time when I got in trouble, it was because I was over-fatigued. When I was and am tired, I was mean and misunderstood.
My husband will vouch that I still have my moments even as an adult. They almost always happen when I don't feel good or am exhausted. It's like my filter, my ability to cope with life, is trapped in the charger that can't seem to fill the empty cell phone battery fast enough.
And other things I got in trouble for: making a D in English my sophomore year. HAHA!
Kicking my step-brother under the table at dinner (all the time - he usually started it).
Talking back. Talking too much. Not cleaning my room. Not doing my chores. Forgetting to put papers out that needed to be signed the night before school. Procrastinating.
Overall, I was a pretty good kid who didn't get in much trouble. I was afraid of my mother's wrath. :)