How did I get here? Sitting with my mother on the 11th floor of Golisano Children’s Hospital, trying to eat something. Trying to make the time pass while Iron Man is under General Anesthesia 8 floors beneath us. I’m praying this is the only time I’ll eat here. I’m praying I’ll never come here again. We’re across the hall from the children’s oncology unit and pediatric surgery, and all I can think is, “this is all in my head. Nothing is wrong with him, it’s all in my head.”
But it’s not.
Around Iron Man’s first birthday, a little after we moved here, I noticed that his head would jerk to the right sporadically. Just a quick twitch, that’s all. I brought it up to his pediatrician, and the response I was told was, “It’s just him falling asleep, like that kick that happens.” Okay, I guess it made sense. They typically occurred after his nap, during his “I’m-waking-up-only-mommy-can-hold-me” snuggles.
They continued, and the pediatrician just kept assuring me in a pretty condescending tone that this was just him falling asleep.
But they started getting more frequent, longer. Sometimes, his right arm would join in, and at times, even his right leg would jump in on the action. But I was the only one who was seeing this. I felt like I was about to get pulled in under Munchausen by proxy… Jason was gone, and it’s not like I could ask his big brothers to help me figure this out. I’m blessed to have parents who come as often as possible, and when they popped into Drum in May, my mother saw it. I’m doubly blessed in that my mother is an extremely level-headed RN MSN whom I have never known to exaggerate. She looked me square in the eye and said that he needed to be seen by a neurologist.
I fought for the referral. There was one point, about mid-July, when I had the appointment, and I was just dying for time to pass so they could see him. It was getting worse. He was watching bubble-guppies one day, and I watched the jerking start at his head, and then his entire right side joined. I burst into tears, overwhelmed with the gut-wrenching feeling that my baby was not okay. Something was wrong. Very wrong.
So there I was, in that waiting room, and I had never felt more alone in my life. Deployments freaking suck. Neurologist saw us, heard us, watched him. Myoclonic Epilepsy. I’m sorry, What? Jason had managed to get to Skype on my cell phone for diagnosis. Thank you, God. Here’s the kicker: the epilepsy is most likely caused by something on his brain. Doc told us the three options here were scar-tissue which would have formed in-utero, a cyst, or a tumor. I have played this back in my mind time and time again. He just used the words “brain tumor” as a possibility and pointed to my baby’s head, to the exact spot on his little brain that he suspects something is lurking. I’m sorry? Are you freaking kidding me? No offense, but that’s my little love, and you’re certainly not McDreamy.
I’m not sure how I drove home. I know I talked to Jason, my mom, my sister, and my aunt. That’s about all I remember. I have never cursed myself for staying at Drum during this deployment before, but this was the moment. I had just received news that I found to be terrifying, and I was alone. Well, I had Iron Man to keep me company, but I really wanted my family. I met up with my buddy, we’ll call her the Mad-Painter, and she let me work through my shock. Oh, and throw up in her bathroom. Yeah. Running Woman brought me cupcakes, which is a welcome treat for someone who is always making them for other people. She kept me company that night. Then I went to bed, and laid there for hours, replaying every single word that doctor had said in my head.
He couldn’t be right.
His EEG came back normal, which I was told is not uncommon in epileptic kids. You have to actually trigger a seizure to get it to show anything. There went my happy, hopeful moment. The couldn’t get us an appointment for a sedated MRI until late September, which pretty-much made me want to vomit. I’m sorry, but if you’re telling me that there could be something on my baby’s brain, you need to take the damn picture and tell me. Now.
Iron Man went to hourly care on Drum on Tuesday last week, so I could prep for our move. They told me they noticed the jerking. Wait, seizures. That’s what they are, so let’s man up and call them by their proper name. Seizures. Wednesday was move day. Iron Man went to hourly again so I didn’t have a two-year old underfoot while burly men carried armoires upstairs and gashed the heck out of my trim. Jason’s grandparents were so kind to drive up and help me through these couple of crazy moving days. I guess I should mention that they live about 3 1/2 hours away, and they never hesitate if I need them. Grandma and I picked Iron Man up, and his worker pulled me aside. “He’s been falling all day. He’ll just be standing there, or sitting there, and he’ll fall.” He had fresh bruises on his head to prove it. I signed the incident reports, and took him home.
First thing Thursday Morning, I called Neuro and told them he’d been falling. At home, we saw it too. By Friday morning at ten, I was told they pulled strings, and got Iron Man in for a sedated MRI on Monday. By 5 O’clock, my mom called and told me she bought a ticket and would be flying in on Sunday. I nearly broke down from relief. She knew I would be alone, she knew that I was overwhelmed. She came without me asking her to, because she knew I needed her to.
As we drove into the parking garage at the hospital, I was struck by a thought. “Mom? Is this it? Is this what our lives will be now? In and out of the children’s hospital?”
“Maybe for a little while,” she responded kindly. I told you, she’s extremely level-headed. I love that she doesn’t B.S. She came because she firmly suspects that the neuro guy is right.
They banded his little ankle. They visitor-tagged us. We laughed that when they asked for ID, we both offered up our Colorado Drivers Licenses, not our military ID’s. The nurses went crazy over Iron Man’s Daddy Doll. They told me that they know we sacrifice so much. Maybe today, that’s how I felt. I was signing a paper, putting Iron Man under, and I felt solely responsible. Jason stayed on Skype the entire time, and I texted him updates, doing the best I could to keep him from feeling helpless. They walked us back, I took him in. They put my tiny boy on a giant gurney, and placed his head in the rest. I wrapped his blanket around him, tucked his Daddy Doll under one arm, and Harvard (his favorite bear) under his other. They put the mask on him, and I put my face close to his so that I was all he could see. I stroked his beautiful red hair, cupped his cheek in my hand, and told him that he was about to take a great nap, and not to worry about the clicking he might hear, that was just the camera taking pictures. His eyes rolled back in his head, and I kissed his cheek, whispered, “Daddy and I love you,” and left him with the doctors. Yes, I had to swallow back a few tears.
My mom is an awesome person to have around during a crisis. She’s level. She’s calm. She’s extremely knowledgeable. She likes to point out where the hospital is missing a JCAHO standard. 😉 She kept telling me, “This is good. We’ll know how to treat him, we’ll know where to go from here.” She kept me from bawling my eyes out.
He woke up with no tears, no screaming. He took it like a champ, and I prayed that wasn’t because he knew this wouldn’t be last time. The nurses loved him, of course. After all, he’s Iron Man.
So now we wait. Now I call and harass the neuro office for the report, which I have been repeatedly told won’t be out until Thursday. I’m caught between praying it’s clear, and praying that it shows something treatable so that we can finally figure out what’s causing this. I just need to know, and the wait is killer. Between Jason having been gone 10 months, moving into the new house, and everything with Iron Man, I have never been more stressed out. I feel like crying. Kicking. Screaming. The kids are a stressed out Mob, the house is a boxed-up nightmare, and now I’m watching Iron Man like a hawk, second guessing his every movement. In the midst of this, I’m trying not to stress out Jason. I’m trying to unpack. I’m trying to hold it together. Trying. Not always succeeding. I’m at this point where I’m cutting every stress out of my life that I can and focusing on just our family, because that’s all the energy I have. I just don’t have anything left in me. I’m tired of people who barely talk to me asking what’s wrong with him like it’s the drama of the day to spread around. I am terrified for Iron Man. I am exhausted. I am spent. I am drastically overwhelmed. I’m taking it one day at a time, because that’s all I can do. But my mom is here, so it’s okay to let some of the pieces fall, because she won’t let me shatter.
It’s midnight. Officially Thursday. Today will mark either the peak of the stress, or just the beginning of a road I can’t even comprehend. But I can tell you one thing. The waiting sucks.
***Update*** This post is from over three years ago, during Iron Man’s initial diagnosis. There was no tumor, and to-date, they cannot explain his myoclonic epilepsy, which puts him in the 70% of unexplained epilepsy cases. He is medicated, happy, thriving, a hockey-player, and driving his brothers nuts while being seizure-free on his meds for the last year!