Epilepsy and August 30th

That is the day we start our journey toward curing this epilepsy.  Cleveland Clinic set the appointment yesterday for brain mapping, a PET scan, neuropsychological testing, and a video EEG which will induce seizures and carefully map where they originate from.  Most of me is very excited about the possibilities, I have the disadvantage of having gone through this once before. There is a part of me which is really scared for selfish reasons.

When Jake was 18 months old, he started having seizures.  He would get this look of terror on his face, then turning blue, drop to the floor and stop breathing.  Sometimes he would start breathing again on his own, sometimes I would have to start rescue breathing after 3 minutes.

 The first couple of times I called the paramedics.  By the time they got to the scene 10 minutes after the seizure had started, he was sleepy but his vital signs were good.  I remember after a particularly long seizure where he planted his little face into my hardwood floors that I took him into the ER myself, flanked by Jerra and Josh.  The ER physician looked me straight in the face and said that maybe I was just overreacting and that he didn't look like a child who had seizures. ( apparently, those children have a big red "I have seizures sign on their foreheads" which we were lacking). I felt dejected and silly- but at the same time angry.

Then began a year and a half of trying to take time off from the job that was paying all of the bills to go down to Riley and get testing done and see the Neurologists. I cannot figure out, short of divine providence, how I was able to afford all those trips on the meager salary I was earning as a public health nurse.  I think I have blocked out the number of sedated tests that were done after an IV was started and we had endured his pitiful cries for us to stop.  It was horrific.

A miracle happened after one of the dozen CT Scans of his head: a radiologist stopped me in the hallway and said that after we got the seizures under control, we should see an ENT  get his nasal polyps removed. 

It was another 6 months before Dr Berner, who I had worked with in the ER, looked at Jake's nose.  Pardon the language, but "Holy shit" was his first response to what he saw.  There was a huge mass of tissue in the left sinuses.  He sent us for a CT of the sinuses and said he'd call me on Tuesday.  Late in the day, in the middle of our immunization clinic, he called, saying that he had just gotten off the phone with the neurosurgeon and that we would be sending Jake to surgery to have the tissue put back in place and have the hole repaired.   My work-partner made me sit down as I repeated the words.

I struggled with whether to even call his dad, since he hadn't seen him in over a year.  My father's advice to be Christlike in my decision overtook my anger and I called him, bringing him up to speed.  His father and his new wife accompanied us on the day of surgery. He has been diligent in seeing his son ever since then.

As it was explained to me later, there was a part of the brain which had formed outside the protection of the normal cavity.  Should Jake get hit in the nose, this mass would open, and he would lose consciousness and die.  For the following weeks as we got ready and donated blood  I was scared to death that something would happen to him.  I can only say that his Guardian Angel was very tired trying to keep him safe.

The worst part, and the part I hate to go through again was the waiting.  My folks kept the other two kids, and my friend Skjeie sat with me throughout the surgery.  It cannot have been an easy task and my fear came in waves and I counted the minutes that he was in surgery.  It lasted more than 6 hours.  That is a long time to sit with a mother who is a little panicked about the state of her child.  Skjeie will always hold a special place in my heart for the kindness he showed me that day.

In the days that followed there was pain that I couldn't explain to him, swelling all over his head and face and the stares of everyone who passed us as the 56 stitches looked like a black tiara across his head.

Can I just say that I would probably feel better about this if it was me, instead of him?  I remember thinking about the fact that God gave up His son- that He understood my pain and my fear  - even though my scenerio paled in comparison to that of the Crucifixion.

We went for 8 years without seizures until one night, about 3 months before we left Indiana, Jake had another seizure and it started all over again.  He was 11 - so for 3 years a single medication taken daily eradicated his seizures. We think it was all the growth hormones which triggered the seizures and made the medication ineffective.  He has put on close to 100 pounds and almost 9 inches in the past year.

Then last August, he started having them without provocation, when he was studying, when he was walking in the woods, swimming, waiting for icecream at the restaurant,cleaning his room,  while riding in the car, at a funeral just sitting, and even playing cards.  There has been no rhyme or reason.  I know that God only gives me what I can handle, but the unpredictable nature of these made me feel entirely powerless.   It has been the most awful experience. Jake is under constant supervision and is subjected to Jerra and I checking in with him all the time.  He cannot get his driver's license, he cannot just head off to the movies, he cannot go for a bike ride. I had resigned myself to staying single the rest of my life as someone would need to live with Jake.  It is a tough existance for him. He takes medication every 4 hours during the day to maintain high blood levels, but on the two occasions that his meds were a couple of hours late, he had a breakthrough seizure. 

I was worried about going through this alone.  I think for some reason I believed that I needed someone to love and comfort me through this.  I was reminded this morning that while having someone with broad shoulders would be great, it is a want and not a need.  The real truth is that the Holy Spirit will bring me comfort, my friends will be there for me, my family will stand shoulder to shoulder with me as we wait upon the Lord to heal Jake.

God has blessed him with a sturdy body - which he has needed since the seizures cause all of his muscles to contract and leave him exhausted.  He will be healthy before the surgery and there is the great possibility that he will be totally seizure free after the surgery.  How could I say no to hope?