Wear A Purple Ribbon

November is a special month for my family, but not for the reasons you might think. Not for birthdays or anniversaries, not for big celebrations, not for family reunions. November is Epilepsy Awareness Month. This is an important time for my family because my youngest son, Matthew, was diagnosed with epilepsy when he was two years old.

I have been a special education teacher for over ten years, so I have worked with students who have had a variety of diagnoses, including seizure disorders.I have comforted students as they were seizing, I have ridden in the ambulance to the hospital with students after 20 minute seizures. With all of this experience behind me, no one could have prepared me for October 26, 2008... The day our lives changed.

Matt had his first grand mal seizure during his mid afternoon nap. For some reason, and by the grace of God, I was laying on his bed with him when it happened. His body stiffened, his eyes rolled back, and he groaned. My logical mind knew what was happening...a seizure...put him on his side...call for Roger...call 911. Luckily, it seemed to override my heart at the time and everything went as if from a textbook. The ambulance crew was amazed at how calm I was as they put the oxygen mask on Matt's tiny face. I smiled and muddled through the ride to the hospital. Once at the hospital, Matt was recovering nicely, but he was exhausted. While he slept and my husband and oldest son waited with him, I went into the bathroom. The realization of what was happening swelled up inside me and rushed out as a flood of tears. Sometimes I believe that my training allows me to "know too much". I knew what was probably happening. I knew that he would be referred to a neurologist, I knew he would probably take anti seizure medications that are hard on the bodies of young children....but wait, maybe I am getting ahead of myself! Maybe it was just a fluke! I mean, toddlers are known to have seizures for no apparent reason and never have another one! Yes, I am getting ahead of myself. It was an isolated event. Nothing more, nothing less. Whew!

But that was not to be. The seizures continued, sometimes five to six a day, and after consultation with a brilliant neurologist, a portable EEG, and an MRI, Matt was diagnosed with Generalized Epilepsy, which is simply a seizure disorder with no apparent cause. We have been through several medication changes, numerous trips to the emergency room, and more medication changes. I left my job as a teacher during the first few months after Matt's diagnosis because Matt's seizures were so unpredictable and frequent at that time. I will never regret that decision. It was the best decision I have ever made. There have been many challenges other than medications. We always have to accompany Matt to any community activities just in case he has a seizure. He is restricted in terms of what he can and cannot do on the playground at school. We have a difficult time finding babysitters. We have to go for blood work once a month. However, there have also been positive changes as well. My family was always a source of strength for me, but after this,they became even more than that. We have a bond that transcends time, tragedy, and Epilepsy! Matt's older brother DJ is a caring and strong person who, because of his experience with Matt, is able to remain calm in the most volatile situations. My husband is the rock that I lean on and I know he feels the same. There is a trust between all of us that is immeasurable. The turmoil of the past two years has also brought us all back to God. We thank the good Lord every day for our family. We thank God that Matt has been able to endure all of the trips to the hospital, medications, doctor's visits and bloodwork. We thank God for our friends and their support. We have also learned through this experience exactly who our friends are. We know who can be there for support during the good and bad times as well as those, and yes there were many, who are incapable of providing support. Times like this let you know who you can trust and who you can rely on.

Well, two years have passed and I have to say that things have changed dramatically. Matt has been seizure free for over 9 months now. The medication he takes now has proven to be very effective in controlling his seizures! He is a vibrant, loving, hyper little boy who loves life. He is so curious about the world around him and thinks that his brother is the coolest person on the planet! He loves dumptrucks and loves to dance. He has an amazing sense of humor and loves knock knock jokes! He goes to preschool and is learning so much. His neurologist appointments are farther between. I look at both of my sons and cannot believe that God has granted me all of these wonderful blessings. At the same time, Roger and I are always vigilant for any telltale signs of seizure activity. We continue to carry the "emergency backpack" wherever we go. We still have the emergency medication in the kitchen cabinet. You cannot let down your guard, no matter what! Matt's safety and health depend on our vigilance and we will not let him down. But, we can also be happy in the moment and feel blessed for the wonderful family and great times that we have.

So, when this November comes around, Matt and I will be out and about in town, giving out purple ribbons and brochures-many thanks to the Danny Did Foundation- for epilepsy awareness. We wear ours with pride, knowing that for now, we are a success story. We also wear them to acknowledge the 60 million people throughout the world who live each day with epilepsy. We wear them as a reminder that epilepsy research is underfunded. We wear them to celebrate the connections made with other families who also have experienced living with epilepsy. We wear them to acknowledge the kind, friendly, and brilliant medical personnel who devote so much time to treating their patients with dignity. In our house, we celebrate November as the turning of the fall leaves, the smell of cooked apples, the taste of Thanksgiving turkey, and the ability to live another blessed day seizure free!

Many blessings to all!


Lori, Roger, DJ and Matt Allen


Belchertown, MA