November 26, 2012

Early Morning Seizure

Last night Evan curled up in my lap like he used to do when he was younger and somehow he folded himself up to fit. I wrapped my arms around him and found myself wishing I could envelop him in my love and make everything better. Make his seizures stop.

As a parent, you want to be able to help your children with the small problems and fix the big ones, but in this area we are powerless.

We can tell in the days leading up to a seizure that one is brewing, but this can last several days. We wait and sleep restlessly in anticipation of being jolted awake by our seizing child.

The seizure always lasts too long and the minutes pass slowly in the tense air of our bedroom. After several minutes it finally stops and we are relieved, exhausted and left feeling beaten. Sometimes we sit speechless in a daze, sometimes we cry, eventually we turn off the light and go back to sleep. There is nothing else to do.

This morning Evan had a seizure and he slept in to recover from it before going to school. This time he remembered having a seizure, but often he does not. He was a little wobbly when he woke up but and also had double vision. Once that passed, his spirits were high, as they usually are after a seizure, and he cheerfully had breakfast and got ready for school. For us, the morning after a seizure offers frustration, concern and that ever-constant feeling of helplessness. We follow Evan's lead and get ready for the day.

Tonight Evan is sleeping soundly and tomorrow will probably be a good day.

November 25, 2012

So Thankful

November is a month filled with emotion for me. It is the month Evan was born, the month he began having seizures and the month Dr. Weiner gave us back our son through brain surgery. November is also the month we launched and we feel so fortunate to have given this resource to the epilepsy community. Finally, November is Epilepsy Awareness Month and that seems so fitting.

It has been five years since Evan had surgery and to this day it was probably the best gift we ever gave Evan. The first stage of his surgery was just a few days after his birthday and the final surgery was just before Thanksgiving. That year we celebrated Thanksgiving with a collection of families from different cultures, all facing their own unique challenges. We were brought together by different events and all sat down to celebrate the holiday together at NYU Hospital. I will always remember that as the most symbolic Thanksgiving our family has celebrated together.

I am so thankful for the experiences we've had as a family. I love that our home is filled with laughter and my favorite times are when we sit at the table, lingering over a meal, laughing and telling stories. I feel blessed to experience this almost every day. Aria and Evan bring so much joy to our home.

The two newest additions to our family, Dinky and Mindy, never cease to amaze me. Dinky watches over Aria as much as Mindy watches over Evan. I love to see how much Mindy has bonded with Evan, and know their relationship is crucial to her success as his service dog. She has responded to seizures we didn't know Evan was having and she is his constant companion. Aria dotes over Dinky and he is happiest at her side.

We have so many people in our lives who have offered support, guidance, and relief through this journey and we are forever thankful for each of you. Some of you may never know how much of a difference you have made in our lives.

I am also thankful to be married to a wonderful man who is always ready with a smile, a hearty laugh and enough love to feed my soul.