Brooke having lunch with Clifford after getting set up for “their” 24 hour EEG.
When Brooke was first diagnosed with autism, Jess and I sat in our car and cried. We did not know what to expect. We did not know what lay ahead of us. Our journey would take us down the typical path of the time: fear, anger and then demands for a cure. We would eventually come around to the realization that Brooke’s neurology was not broken; it was, scratch that, it
is different.
In those early day I found myself looking for a purpose. I was a stay at home dad whose world had just been turned upside down. Honestly, autism scared the shit out of me. I felt helpless. How could I help my girl? How could I make her better? Quite accidentally I stumbled into running (a story for another time maybe). At first it was a stress reliever, but the more I ran, the more “running for a cause” began to creep into my consciousness. I eventually hooked up with Autism Speaks and ran in three New York City Marathons and one Boston Half-Marathon raising awareness and thousands of dollars in the process. At one point I was literally on billboards in different parts of the country encouraging people to sign up to “run with Autism Speaks.”
Ultimately, Jess and I parted ways with Autism Speaks (another story for another time perhaps). Simply put, we had evolved in our view of autistic individuals. We began to listen to autistic adults. What they told us was that there were other ways, better ways to help. We began looking for other charitable organizations.
It was shortly after this time that Brooke began to show some signs of epilepsy. We had all the tests done. Nothing. They told us just “keep an eye on things”.
Then last year on St. Patrick’s Day everything changed. I was coming home from the grocery store. As I pulled into the garage, Jess was on her way out.
“She had a seizure,” is all I remember. I dropped my groceries and we sped to school.
There would be one more twelve days later before Brooke would be put on meds.
Despite the other stressful things going on in our lives, this part of it, the Brooke part, would, with the help of medication, return to a distorted sense of normalcy. That normalcy would be shattered almost ten months later.
Over the last few months we have had to deal with seizures that are occurring at an increased frequency. Medication are being adjusted as we go, but we are still in a state of uncontrolled seizures.
This new landscape has brought back 11 year old memories. I think about that scared father a decade past and I realize that I am more scared now that I ever was then. Yes, there are challenges to being autistic for Brooke, but epilepsy is a whole new thing. Anyone who has witnessed a grand mal seizure can attest to the ultimate helplessness one feels.
***
The landscape for us has changed. We have learned to embrace Brooke’s alternate neurology. We continue to fight for her right to access, but long ago rejected the idea of a “cure”.
The landscape for us has changed. The impact epilepsy has on any given moment is overwhelming.
The landscape for us has changed; my body has changed too – I am no longer as strong or as fast as I was nearly decade ago. But my determination to help make the world a better, safer place for my baby girl has not wavered. I stopped running regularly a few years back – I’m not sure I ever truly bounced back from my 100-miler.
My legs are older; my lungs are older; my stamina is not what it used to be. My heart is heavy. But as the landscape around me changes, I must do the same, and sometimes changing means returning to the past.
Without really thinking about it, after one of Brooke’s recent seizures, I signed up to raise money for the Epilepsy Foundation. I will be running the 2017 New York City Marathon. As of this writing, with your help, I have already raised over $9,200, nearly three times the required minimum and less than $800 short of my goal (with nearly seven month to go – perhaps I should raise my goal again?).
I had originally planned on returning the the marathon distance in two weeks at the Providence Marathon, but in my eagerness to get back into distance running, I injured my leg. My run in November is too important to risk derailing my training this summer, so I am taking the time to let my leg heal.
I will not be as fast or as strong, but I will be as, if not more determined.
This is what I wrote on my fundraising page:
No one should have to live in fear of the next seizure – not the one who suffers from epilepsy nor the loved one who can only watch, powerless, helpless. The next seizure is a fear that haunts every parent who has a child who suffers from epilepsy.
Lives turn upside down; sleep becomes a rare commodity; relaxation a dream. Time is spent on the edge.
As a father these moments, these very worst moments of my parenthood, constantly linger at the edge of my consciousness. I am never not thinking about “the next seizure”.
It is exhausting.
I am tired.
But I know that I have to do something, something so my daughter, my family, my friends, you do not have to live in fear of the next seizure…the worst moments.
I know that we can’t solve epilepsy in one day or even with one fundraiser, but we need science to develop the tools to mitigate if not eliminate these worst moments. This is why I am raising funds to make a difference in the lives of people living with epilepsy.
This is why I am running again.
The mission of the Epilepsy Foundation is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.
Please support this cause by making a safe and secure donation to my fundraising webpage. Giving to the Epilepsy Foundation means you make the world a better, easier, more manageable place for the 3 million people in the U.S. who are living with epilepsy and seizures like my Brooke.
Thank you for your help and support.
Luau
This week won’t involve any running. Jess and Katie are taking a week long trip that has been planned for over a decade. Brooke and I will be doing whatever Brooke wants to do for the April break. I’ll continue to rehab my leg and focus on core strength.
If you are so inclined, I would be grateful for any donations to my effort to raise funds for the Epilepsy Foundation. You can donate —> here <—.
Thank you for your ever present support of Jess, me and more importantly to us, of Katie and Brooke.
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