Math is really simple, when it boils down to exact numbers. 1,924 days. That is how many days it has been since June 3, 2006. That was a day when I witnessed Ian, my son a couple of months passed his second birthday have a tonic-clonic seizure. If you are vaguely familiar with seizures you might be more familiar with the term “grand-mal”.
At the time I knew nothing. I only knew that I was fairly certain I was watching my two year old boy die before my own eyes as he lost consciousness, turned blue, and seemingly stopped breathing. To this very day, every time we see a new doctor or medical professional we are asked, “how long did that last?” We were at a party at a friends house, we did not have our stop watch in hand. In short this went on for at least a minute to a minute and a half, but it registered like a years time.
We went to the nearest hospital, Morristown Medical Center in New Jersey. There was some monitoring, a CT-Scan and the diagnosis of a febrile seizure. Essentially a fever induced incident. At least that is what we thought and accepted driving home to Albany and throughout the next year and half.
In retrospect, knowing Ian and all that has happened since, that was a pretty poor diagnosis and probably at best head in the sand optimism. Reality did not begin to set in until some really confusing days in the fall of 2007 which culminated with yet another emergency room visit on Thanksgiving day to another hospital in New Jersey. At this point we had pretty sworn off ever returning to the state with the kid again.
This time the event was very different. Edging toward his fourth birthday at this point, Ian was able to verbalize to one of his cousins that he was not feeling well. There was no “tonic-clonic” event to signal he had a “typical” seizure (or at least what would appear typical to those not familiar with Epilepsy). He was out of it, he looked drugged or as if he took an upper cut from Muhammad Ali. My first gut reaction was that he ingested something poisonous. I’ll be blatantly honest, at this point some 1,387 days later, I wish that had been the case. It would have been explainable, understandable and perhaps nothing more than a scar of a moment of really poor parenting. The diagnosis again was febrile seizure, but with the nudge to go see his pediatrician to discuss.
The nudge led to an EEG referral, which dropped the real reality bomb, which preceded four months or terrifying days of multiple dozens of small atonic and absence seizures. We met some well meaning, but pretty poor doctors (one thing you come to understand when living in a medical state permanently is that not all doctors are smart, in a nutshell people get medical degrees, but they don’t necessary hit the high bar if you will). This lack of success brought us quickly from Albany to Rochester, to the Guilisano’s Children’s Hospital. This is where we learned Ian was a snowflake in the world of epilepsy. He not only had epilepsy, he was basically putting doctors in awe with his EEG’s. They were not terribly optimistic, but they had a plan. Luckily that plan stopped the outward signs, the physical manifestation of his brain wave irregularity, medication put a near 100% end to his atonic and absence seizures. That was 1,192 days ago.
Sometimes you lose count. Sometimes you lose hope. Things are more complicated for Ian than atonic and absence seizures. We are incredibly fortunate those have been largely controlled, but they are not gone, and his brain is still astonishing doctors to this day. You wouldn’t know it off hand meeting Ian. He seems at first glance perfectly normal. You don’t see epilepsy when you look at him. You have no idea he has cortical vision impairment. You don’t immediately deduce that he has dyspraxia. I forget all the time. Not that he is epileptic, but how much damage it has done to his ability to cope, with even the little things you or I take for granted.
Ian is in the second grade today, 163 days away from his eighth birthday. He is smart and I am not saying that as a duped dad. He can’t read and it remains very likely he might not ever be able to do more than place together a few letters. Still his brain has managed to adapt to strong auditory skills. He’s frustrated and he does not know exactly why, but he knows something is not working right.
Maybe in 267 days as his body continues to mature and his brain and body chemistry change the spikes and discharges going on inside will cease. That happens naturally to many epileptic children as they mature. I am not counting on that though. That is fool’s gold and blind optimism.
In 2 days we will be in Saratoga, for the 3rd annual Saratoga Stroll for Epilepsy. The event raises funds for the Epilepsy Foundation of Northeastern New York. The foundation has been servicing our family since the spring of 2008. All told they service several thousands of families in 22 counties in New York State.
Saratoga Stroll for Epilepsy Come out and join others to walk for epilepsy! This is a 3 mile walk thru through the beautiful Saratoga Spa State Park. BBQ lunch immediately following the walk. Register online or at the event the day of.
Saratoga Springs, NY
10:30 a.m. - 2:00 p.m.
Sunday, September 11, 2011
