Monday, February 8, 2010
When Charlie was born I cried uncontrollably with happiness. When he smiled for the first time, my heart leaped 10 love sizes larger. When he spoke his first word and it was "Dah-Dah", rather than "Mah-Mah", I hid my own personal disappointed and clapped for the winnings of reaching a milestone.
When he developed the Swine Flu, I sat on his bedroom floor and watched him sleep, hoping that it wouldn't get any worse than it currently was. When his Swine Flu turned into Pneumonia, I held him in my arms and prayed to God, over and over again, that my baby would smile again someday. And then when he did finally smile again, I did everything that a mother could possibly do to hold onto it, and not let it escape us.
I love my baby boy. I don't love him more than I love his sister, but I love him very differently. Its unexplainable, really.
The first time I saw Charlie have a seizure, I pulled him out of his crib, and stared into his eyes. I stared long, and I stared hard. I stared through instant tears that blurred my vision and burnt my eyes, and I stared through complete fear.
"Do it again", I thought, and then instantly argued with myself "no don't! Don't do it again, don't ever do it again". I rested his head on my shoulder, and together we sat down on the ground. He crawled away from my lap to go play, and as if I had left my own body, I floated along with him, while not moving at all.
"STOP IT", the voice in my head screamed, without ever being heard past my own ears.
"This isn't real", I convinced myself. "My son isn't having seizures".
I didn't take my eyes off of him for the next 2 days. My sight was connected to his every move. I wouldn't miss a single seizure, if there were to be more. And of course, there were more.
I took Charlie to the doctor, and we agreed that they were myoclonic seizures. He'll lose control of his head completely, almost as if somebody is behind him pulling on a string attached to the base of his neck, and his head will jerk up and to the right, over and over again. His eyes roll back into his head, hes unable to continue doing whatever it was that he was doing, and all we can do is wait for it to stop. Sometimes its just a single jerk, I call those "baby seizures", and sometimes it will be several in a row. Five, six- its hard to concentrate on counting when you're holding your breath in terror just watching. I call those ones "big seizures".
The doctor didn't seem too worried, saying something about how its normal to have myoclonic jerks while falling asleep. I don't think he understood what I meant, when I said Charlie was usually tired when it happened. He's tired, yes, but... hes not asleep. I'll often see him rubbing his eyes, while coloring, and then out of nowhere his head is all over the place, and hes left with a blank stare of "what just happened" on his face, just for a few seconds, before returning to his game of blue-crayon-pony-paper.
The seizures seemed to die down after the doctors appointment. I thought maybe I had been overreacting, thanked my lucky stars that my baby boy was ok, it must have just been a one time (one week) thing.
Until the other day...
I knew nap time would be coming soon, but it was just too nice of a day to stay inside. We went for a walk with some friends, we played at a nearby park, we soaked up sunshine and inhaled fresh air for as long as we could possibly stand it. When we got home, Charlie went down for a nap, and shortly after, so did sister and Mama. Usually Charlie will sleep for an hour or longer, but because his sleep schedule was off from the afternoon's adventures, he woke up screaming, and after a few minutes of continuous cries, I got up from my bed (where I was just teetering near dreams), collected him from his crib, and brought him to snuggle with me under our red flannel sheets. He flopped himself around between the blankets and pillows, like he was playing bumper baby, trying to get comfortable, but he was just oh so excited to be playing on Mama's mattress. And then, something I hadn't seen in weeks.
A big one.
A really big one.
"No, Charlie!", I said out loud.
And then another one. And another one. Three or four really big ones, all just minutes, seconds, apart.
I cried for him, as he had no idea what was going on. He continued trying to get comfortable, I let him crawl on me, and I cursed myself for not demanding that we have that EEG done weeks ago when I knew we should have.
The next afternoon, about an hour after waking from a nap, Charlie was playing on the floor in the kitchen, a piece of tupperware in hand. Christopher and I just happened to be having a conversation, Charlie in between us, me looking at the back of his head, Christopher seeing him from the front.
And then he had one.
The look on Christopher's face was something similar to- shock? Thats the only way I can really describe it. Its not a look I'm familiar with on his face. This was the first time that he had seen Charlie have a seizure, probably the first time he had ever seen any kind of seizure at all, and I could tell that everything suddenly felt very real for the both of us. This wasn't a one time thing, I don't care what the doctor had said, this isn't normal. This is dangerous. This is scary.
Today we'll be in touch with a different doctor, the doctor that we should have seen the first time, and we'll start working towards getting answers. I've done my research, and I've done it well. I'm almost positive I know what his diagnosis will be, it isn't anything life threatening, but because I'm not the doctor, I'm just a worried mother who put hours upon hours into finding out whats wrong with her baby- I don't know whats happening to my son. Until we get everything figured out, my guard is up, and I'm going to be over protective. I'm on high alert, and my emotions are stuck in silent panic mode.
Please bare with us, as we wade through dark unknown waters, holding our children as high above our heads as our arms will allow.