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.

June 05, 2012

Next month Evan gets his dog!

We can officially say that Evan will get his dog next month! Evan is getting really excited! Pretty soon he'll have a furry friend at his side.

May 16, 2012

Changes Coming!

Two months from today we will be in Ohio, ready to meet the newest member our our family, Evan's service dog. We don't know the name or even if it's a male or a female, but none of that matters. What does matter is that Evan's dog will change our lives. Some things will be harder, but many things will be so much better. Evan is having seizures in his sleep and that means he sleeps in our bed. Since he goes to sleep earlier than Rob and I, we check in on him obsessively before we go to bed. Going to bed and going to sleep don't really mean the same thing in our house. Rob and I sleep, but not well. My mind is open to the new experiences of having a service dog and I know it ill help us in ways we aren't even aware of yet. Let the countdown begin!

February 20, 2012

EEG in Long Island

Evan is having a multi-day ambulatory EEG at Cohen's Children's Hospital in Long Island. This is the first time he's had an ambulatory EEG and it has meant that he is not in a hospital and is free to move around.

In the wee hours of the morning before we got to NY Evan had one of his typical seizures so as we drive up to NY we figured this trip wouldn't give us a lot of info unless something is going on that we aren't seeing.

Last night Evan surprised us with a seizure on the last night of his EEG. I hate the seizures but I'm glad we finally caught one for his doctor to look at -- I just hope the machine is working and all the leads are still connected! The down side is that this seizure was only four days after the last one and we don't want to see them happen more frequently.

We've been staying at the Ronald McDonald House of Long Island and last night they gave us tickets to see the Globetrotters and meet a few of the players before the game! It was amazing! We didn't have anything for them to sign so Evan had them sign his EEG cap!

February 07, 2012

Seizure Watch

Life with epilepsy is complex to say the least. We chase after freedom from seizures for Evan, trying different medications, enduring different tests, wishing on stars and praying to a God that remains static.

It's been 14 days since Evan's last seizure and this is longer than usual. These longer periods of time between seizures used to offer relief and hope but now those feelings are all too often tainted with fear and anxiety.

I'm next to Evan in the dark, watching him sleep, listening to him breathe. I don't know if he'll have a seizure tonight but I don't want to sleep too soundly in case he does.

I'm tired of the epilepsy routine that has taken over so much of our lives. I'm not sure what we should be doing differently but I think we need to figure that out before it starts to take a toll on Evan.

January 17, 2012

If Evan Could Change One Thing...

Tonight at dinner the kids were talking about their lives and Aria said, "I'm pretty happy with my life and there is very little I could change to make it better, very little!"

Then Evan said, "Me too. If I could change one thing to make my life better..." I'm thinking he'll say Pokemon cards, DS games, iPod, etc. and then he looks at me and says, "and maybe you can help with this mom. The one thing that would make my life better is no more seizures."

That one little sentence shows the irony of the lives we are living. Evan trusts us and believes in us and our ability to fix the problems in his life and yet if this is his one wish, we let him down every time.

When he was little I used to think it would be easier when he'd be able to talk about his seizures and what it's like to live with epilepsy but I was wrong. Being more informed is better in many ways, but never easier.