It was 3:30 am on April 30, 2011. My husband brought our whimpering 11 month old to me in my bed for his regular nightly feeding. But, this time was different. As he handed him to me, he said, "He's making some sort of weird twitching movement. Maybe he's cold?" I began to climb out of my sleepy fog and realized that it was more that just a "twitch." I took him upstairs and began to nurse him, and he continued to jerk to the right. His head and right leg seemed to be trying to meet in the middle of his body, but only for a second and then they would return followed immediately by another jerk. He seemed to be looking at me, and was still nursing but the movements were continuous. Something in that moment made me stop and think, "If he would for some reason need surgery he needs to have an empty stomach." So, I stopped nursing him and handed him to my husband. I called the on-call pediatrician who happened to be a very well-trusted nurse practitioner, but by the time they had paged her and she was calling back I had pretty much decided to call 911.
Have you ever dialed 911 for an actual emergency? It's a bizarre and surreal moment, punching in those numbers that you learned about in Kindergarten. You are told how to dial them, and the importance of remaining on the line until help arrives. They tell you to make sure you know your address so that the ambulance can find you. What they don't tell you, and could never correctly convey, is the fear in the pit of your stomach and the sort of buzzing sound in your head as you dial those familiar but foreign numbers for the first time.
I remember going outside. I was shivering, but I don't think it was cold. I remember looking at my son in my husband's arms and feeling tears running down my face. I remember the fear, but I also remember the scientific/nurse/logical side of my brain being activated:
"This is probably just a febrile seizure. Children have them all of the time, and although they are scary we will go to the hospital and they will give him some drugs to make him better. That's what this is. I hate it now, but it will be over tomorrow..."
I remember hearing the sirens coming toward my house. So now, I'm feeling tears, shivering from something other than cold, and hearing sirens. The buzzing is still activated in my brain and I steal a glance at my husband. He hands my son back to me. My rock, my safe place, my solid ground when everything else is crumbling...and I see fear in his eyes. NO! You CAN'T be scared right now! It's my turn! I HATE seeing your face like this. I can't take away your fear and pain because I don't know what's going on either. PLEASE stop being scared.
The paramedic looks into my eyes and silently takes my son from my arms. I climb into the back of the ambulance and they begin giving him the routine medications for seizure control. They apply oxygen to his face, and still the twitching continues. It takes FOREVER to arrive at the hospital, but when we get there and I glance at the clock I realize that it is only 3:45. I woke up 15 minutes ago, but somehow it was also 10 years ago.
The team worked quickly. They made decisions, gave meds, called our regular pediatrician. He came. More meds given. My husband arrived. The whole time people are buzzing around my head. They are saying things to me, and I am answering them. But, all I can focus on is the mental image I have carried with me for now 365 days. My tiny little boy was lying in a sterile, white hospital bed. He had on his little red car pajamas. I sat next to him and he had brief moments between jerking movements where he would whimper and reach for me with his good arm. He looked straight at me..."Mamamamamama!!" Asking anyone to make it stop, but reaching for his momma. And then that beast of a seizure would slam him back to the bed and he would be gone once more. This continued over and over and OVER and OVER again:
"I CAN'T MAKE IT STOP!!! SOMEONE MAKE IT STOP!! CAN'T YOU SEE HE'S HURTING??? I need to help him. Someone help me help him! NOW DAMMIT!!! I am here, sweet boy. Mommy isn't leaving. I'm holding your hand. Can you feel me? I'm right here...I'm right here..."
And now, I'm the child. I want MY mom. But, she is out of town and calling her will only scare her more than she could help. My second mom is here. I can call her. She will know what to do to make all of this go away. She'll know what to say. I call her. The seizure doesn't stop.
Words. Phrases. Continuous streams of words and phrases being shouted around me. "We need more medication." "We need to intubate." " He needs to be shipped to St. Louis Children's Hospital." Ok, the seizure isn't stopping. I have to do three things.
1. Stand by my son as a tube is placed in his throat to keep him breathing.
2. Pick up my purse, and walk beside him to the ambulance.
3. Arrive at the airport on join him on the tiny airplane that will take us to St. Louis.
These are the only three things that I can do. My brain is now empty except for these three things and the mechanisms I need to be working in order for me to continue living. Heart beating. Breathing. Those things and the steps that will get me to the place where people can help my son. I can do this. I can do this. I can do this. The plane is waiting for us, and we board for our 40 minute flight. There was so much turbulence and the weather was so bad that the medical personnel on the flight actually hit their heads on the ceiling. It was a bizarre thing to notice because I'm afraid of flying. But, at that moment I just watched from somewhere outside my body as they were thrown around the plane but I felt no turbulence from my seat right next to them. My eyes were locked on the lifeless little boy in the bed:
"Don't die baby. Please don't die. I love you. That should be enough, right? Don't die. We're almost there."
We arrived at the St. Charles airport and they moved us to a Children's Hospital ambulance. Easton was in the back with the medical personnel and I was in a middle cab...alone. It was at this moment that I began to "feel" again. I looked out the rain-stained window as we pulled up to a stoplight. I saw a mini-van next to our ambulance and in the back seat was a curly-haired little boy around 18 months old. He didn't smile, or wave emphatically as babies often do. He looked straight into my eyes and slowly put his hand up to the window and held it there. This was my moment. My moment to be with my baby without actually seeing him. And everything about this little boy was right...except his eyes. He had large, round BROWN eyes. My baby has ice blue eyes. I couldn't stop the tears then, and I didn't try.
We made it to the St. Louis Children's Hospital PICU. More people. More words and phrases buzzing around my head. I was talking and answering questions on occasion, but mostly just stood there silently. I was the wide-eyed child, trying to soak up all that was going on around me, but retaining nothing. Some nurse was telling me where the bathrooms were located. Where the cafeteria was, and how I could sit in the lounge later if I wanted to take a break:
"Take a break??? From what?? Why am I here? I'm not supposed to be here!!! I'm not one of these parents!! Why are you all looking at me like you expected me to be here today!! This isn't my life, and that little boy, while beautiful is NOT my son! He is animated and wonderful! He likes ice cream and his momma. Why don't you know that? When can we go home and pretend this isn't happening?"
Things kept happening this way. More pieces of life-saving hardware were pierced through my baby's skin. More medications were pumped through his veins. More tests performed. More. More. MORE. Until at some point, I just fell over from exhaustion. I remember a nurse nudging me awake and telling me to look at the EEG screen that was measuring his brainwave activity. I see that it no longer looks like a tangled mess of wires intersecting in all the wrong places, but is now a completely flat line. Am I supposed to be happy that the seizure has stopped, or fearful because my son's brain is completely shut down? I look at her face for the answer to the unasked question. And that's when I know. She wasn't sure that it was ever going to stop, and she was elated that he was "no longer suffering." They had been thinking he wouldn't make it out of this. That was becoming abundantly clear. The next move I make is toward the clock. It is 3:50am. Twenty-four hours. It is my birthday.