The Beginning

It is hard to know where to start, so I will begin with the nightmare.

I don't know why I am so emotional these days. I get like this every August I think. It’s a reminder of how far we have come but also a deep sadness because the wounds from battle haven’t healed yet. I feel like I am crying or waiting to cry! It’s exhausting. I look at Dane and I am filled with this love hate waterfall!  

I remember it all so clearly. His first step, his first seizure all in the same week! The 9-day hospital stay at Tallahassee Memorial. We had come to visit my Mother and I was napping because he had been a nightmare due to teething and possibly just being Dane. She screamed and before I knew it we were in an ambulance and we were on our way. I have never been so scared in my life.  I can see it and feel it like it was yesterday. I was sitting on a gurney in the ER panicked and devastated.  The grey lights and the haunting smell of that hallway. I was crying and praying like I never knew possible. I had never seen anyone have a seizure. It was like everything I was told in Sunday school about someone being possessed. Uncontrollable shaking and eyes rolling, it just kept happening, on the hour every hour.  And then they moved us to the ICU, where I stayed never leaving his side. With all the monitors and testing, spinal taps, EEG test after test and more tests becoming my comfort because maybe they would find an answer to my beautiful boy. Maybe this test would fix him. Little did I know then there was no fixing only enduring.

 I was 24 at the time. Listening to Doctors put the fear in me about all the medications they “needed” to give him or he’d become “status epilepticus” and never stop seizing. The meds may shut down his liver, kidneys or rot his teeth out but it was our only option. We had to give him these medications we had to. They told us to make the seizures stop.  What they didn’t tell us was 70% of epileptics on medication still have seizures and most are on multiple medications.

 So here we are 22 years later and I am proud of US.  God whispered in my ear on day, “You must find Joy in this Journey”. And I do.  Joy for having a son that is filled with JOY and Perseverance that has given me purpose even though I get pissed off sometimes because it's not the purpose I wanted.

It is far more meaningful than anything I would have chosen anyway.

 Life is funny that way isn't it? Surprises around every corner!  Who would have thought I'd be married to the most amazing man and live this life of privilege entwined with all this hardship! I suppose God wanted to keep me from getting bored.

 

 

Dane Capo