Saturday, September 2, 2017


Dear Jacob,

Sometimes I let myself feel a seizure. I let myself truly feel the pain of your seizures. It is something that is ingrained in me. We endured so many together, way too many for such a little body. Way too many in ten years of life. The longest seizures lasting eleven long days and nights. That was a very challenging time for you, for us. I still to this day can't imagine a stronger person than you. Everyone told us that was it. You had completely different plans, and went on living for another six and half year. You showed the doctors wrong. You showed the world wrong. How lucky was I they were all wrong.

When I think back on your seizures, it always involved a clock, preferably where we could track time by the second. The beginning of a seizure was often subtle with you. Did you just stare out in the open or was it the beginning of a nasty seizure we didn't know if we could stop or not? The times when your eyes were starting to look up and to the right, to the left. Were you going to get "stuck" with your eyes or would they come down again? You were always trying so hard to break the cluster. Seconds turning into minutes. Knowing that for each minute, we were getting closer to execute your seizure action plan and give you your rescue medications. Medicines to be drawn up. That nasty sticky red medicine that I still know the taste of. My eyes never leaving your pulse ox, adjusting your oxygen level as needed. Many times calling your neurologist at the same time as I was watching you like a hawk. I never broke down in the middle of our emergencies. I pushed through, kept my head clear, all to advocate for you.

And then there were the times when the seizures took over. Whatever we did, we couldn't control them. The seizure monster took over our lives, our souls, our happiness. If you are someone who has never called 911, you have not experienced a true medical emergency. It's scary. You're not in control. You're needing immediate help - now.

I can't even count the times I had to call 911. It was familiar territory to us. I knew what the dispatcher would ask me. I knew what the ambulance crew would ask and would do. I learned to open the front door, so they simply could walk in. I made sure your medication sheet and seizure action plan were available for them. On a good day, my bag was packed and ready to go with you. Other times, the cell phone didn't even accompany me. But I never, never knew how you would do. I was a hawk in the ambulance. I often had to negotiate with the medical crew. I never wanted them to start a line in the ambulance. No one ever succeeded, so why put you through that pain. I had to give in at times when they wanted to medicate you in the ambulance. I knew where on the highway they would call Children's to let them know you were coming. I was always happy when we were greeted by our favorite ER doctors and nurses.

We had many, many hospital stays due to seizures. They were often frustrating hospital stays. Neurology is not a clear science. One thing that might work for one patient might have the opposite effect on the next patient. Neurologists who didn't know you made me scared. They approached you with their typical cards, which we already knew would not work. Negotiations, patience, and trial and error. I got to witness the hierarchical structure in the hospital where I just needed to get to your doctor, no matter what. Advocacy and patience all bundled up in one.

Jacob just home from the hospital after having uncontrolled seizures.

In your ten years of life, I never, never got used to your seizures. Each one of them ate at my soul. Each of them was a threat to your life. You went in and out of periods of epilepsy, and they took over our lives. They took over your brain, your body, your mind. They made me feel helpless. They made me wish for a miracle, a miracles to make you seizure free. One wish that never happened.

Today, I don't need to worry about your seizures. Your brain is not seizing any longer. In my world today, there are plenty of opportunities to sweat the small stuff. Plenty. So to feel your seizures from time to time make me stay real. Make me not forget about what truly matters. And it makes me remember you because even on one of your hardest day, you were my beautiful boy. I could hug you. I could kiss you. I could be with you.

Sweet beautiful Jacob,

I love you forever to the moon and back,


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