I gave up on religion a long time ago. I still say a prayer every night before I go to sleep, but honestly, it’s more a combination of habit and hedging. Lately, I am finding less and less reason to believe.
***
It started a little over a year ago: a call from the nurse, a rush to the school. Even as the events were described to me, I really could not visualize what had happened. Twelve days later, it happened in my arms – my worst moment of fatherhood and now I cannot not see it every time I close my eyes.
A visit to the doctor, a prescription and then…
…nothing.
Nothing for twelve days, thirty days, three months, six, the turning of the calendar, ten months and then…
…a speed bump…
A seizure? Maybe. We’re not sure. It was something. No, yes, we’re pretty sure it was a seizure.
A few weeks go by…
And then a late night event, stumbled upon because one of us heard something – something that could have easily been brushed off as nothing, something that thank God we didn’t ignore.
We up the medication. Another couple of weeks and then…
BAM! BAM!
An MRI, an EEG…nothing unusual, nothing abnormal, nothing to report. Nothing to tell us what to do. A new medication…a new hope and then…
BAM! BAM! BAM!
And another one today; I literally ran to be with her…
Daddy is here, Mama is here.
Nearly once a week…for four weeks…no, five weeks, no four…
I hate that I can’t remember if we are at six or seven in the last two and a half months! How can I not remember?
I look for patterns, for triggers, for reasons.
Is it light? Is it sound? Is it the weather? The season? Her hormones?
Is it her diet? Is it her iPad? Is it the water? The environment? Her…what?
Hey, GOD!!! What is it?
Answer me! Tell me! Help me!!!…help her.
And then I remember: I stopped believing in You a long time ago.
I’m…scared.
***
And so I keep looking for patterns, for triggers, for reasons.
Her doctor has recruited more doctors. She now has a team.
I will be Daddy.
I will hold her, and hug her and kiss her. I will sit with her, be with her, love her.
I will look for patterns, for triggers, for reasons…
…and I will run.
***
If you are so inclined, I would be grateful for any donations to my New York City Marathon run to raise funds for the Epilepsy Foundation. You can donate —> here <—. I run because it is something I can do to help scientists and doctors find answers; to help them help Brooke. Your incredible support has already pushed me past $10,000. I have set a new goal of $15,000, which would be over 30% of the team’s overall goal of $49,000 by November 5th. You keep pushing me to push harder.
As always, thank you for your ever present support of Jess, me and more importantly to us, of Katie and Brooke.
I love you guys so much. I hope you have answers soon. I’d donate everything I had to help ❤️
We love you and you family so much as well! Xoxo
Oh, my heart was in my throat as I read that. I hope that the team can help figure out how to help her.
Thank you, Lisa. Me too…me too.
We go through this with my 9 yr old autistic grandson. He had 2 in one day last time about a month ago. My daughter had PSTD from it. Since my daughter is a single Mom, my12 yr old grandson is very good at calling 911. Kudos to you for being the Dad you are. My ex son-in-law couldn’t hack it. Thank you for raising money for research. I’d contribute, but all my retirement dollars go to helping support my daughter so she can stay home and raise her boys.
Thank you! Hopefully science will find answers for Brooke and your grandson some day soon. Prayers and shares are just as appreciated as donations.
I hope you guys find answers to help this sweet girl. Love to you all.
Luau,
I read 2 of your posts and feel like we are living parallel lives. I am also running NYC Marathon to fund raise for Epilepsy foundation. I guess we are teammates in more than 1 aspect.
This post about God really struck me. I am in the same boat. Raised in the church, even the churches youth pastor for 5 years before we had kids. We can probably share similar stories about unanswered prayers.
My son Freeman is my hero, as I am sure your daughter is yours. I hope that our efforts help find better treatments for this wicked condition.
Peace. See you in November!
I look forward to meeting and sharing miles with you, Kyle. See you in November.