November 18th had been looming in my calendar: CURE’s annual benefit, where I was scheduled to speak in front of 1,000 people. The theme for the evening was, “Taking Flight”, inspired by the name of one of CURE’s research grants that is awarded to a young investigator. Full disclosure, I’m one of those weirdos that gets a rush from public speaking, but when the topic is my recently deceased daughter, let’s just say the excitement fades a bit. Leading up to that night, I was feeling less like taking flight and more like failure to launch. Honestly though, it wasn’t the speech that had me worked up - I knew that I would cry, that maybe I would need Miguel to step in and finish it for me, but that no matter what, life would go on. No, what had me struggling to leave my home was having to face the emotion of the evening. I have been in full on distraction mode for over a month and the moments that I force myself to sit in my grief are almost unbearable. This would be an entire night of having to face the fact that my daughter was gone, that I was now fighting for research dollars for everyone else.

While the night was undeniably emotional, I’m not sure that I have ever felt more loved and supported in my entire life. Of course it was hard to greet people that I had not seen since Adelaide had passed but it was also nice to get that initial post-Adelaide hello greeting out of the way while I had the distraction of needing to work a room and move on to the next friend. You know I balled my eyes out during my speech, but not until the end and then Miguel was there to help my shaky legs make it down from the stage and back to our table. I also found camaraderie in reconnecting with two amazing mothers I met a few weeks ago that had also lost children recently. While their otherwise healthy children lost their lives to SUDEP vs our long drawn out battle, there was an understanding of recent child-loss that we could share between us. An instant bond felt through a glance, touch or nod.

Given that it is epilepsy awareness month and I have done very little epilepsy advocating in the blog this month, it felt appropriate to share my speech from the CURE event with you all. When I have video, I will share that too on my website, but for now use your imagination of me in a red dress at a podium, fully Xanax’d, and giving my waterproof mascara a run for its money…

Miguel: Two years ago my wife Kelly and I stood before you in hope that answers could be found to help our daughter and the other 1 in 26 affected by epilepsy. Last year we stood before you more desperate as we watched her seizures grow more intense and her development slip away. This year we stand before you in grief after having to say goodbye to Adelaide last month but with all the more resolve to continue this fight. At this time I’d like to welcome Kelly to the stage.

Kelly: For three years our family has fought for answers and better treatments. Traveling the country, meeting with countless specialists, driving hours every week for cutting edge therapies, trying med after med and treatment after treatment all in the hopes that something would help her. Her symptoms piled up and it became clear just how complex her medical condition was. In the end we always wondered what quality of life she might have been able to achieve if only we had been able to control her seizures. We never gained seizure control or received her overarching diagnosis and in May it was determined that her disorder was neurodegenerative. Realizing that science was not going to catch up to our baby girl in time we came to the impossible conclusion that it was time to let her go.

In a letter to Adelaide that I posted on my blog I wrote, “I promise you, my angel baby, that your efforts, your fight, your life will not have been in vain. We will take the eternal lessons you taught us and continue to plant your seeds in the hearts of anyone who will listen. I promise you that I will never stop advocating on your behalf, raising awareness and money for research so that families in the future will receive their epilepsy or neuro-degenerative diagnoses along with a treatment plan to full recovery. I promise you that I will fight for science to catch up to the next child even though it could never catch up to you. I will fight so that you can rest, free from the pain this world couldn’t relieve.”

So, yes, we are grieving an unimaginable loss but we are also standing before you keeping that promise to our baby girl. That we won’t stop fighting, advocating and raising imperative research dollars. Because no family should have to go through this kind of loss but way too many of us have. Over these last few years I have had the privilege an honor to meet so many members of this unfortunate epilepsy club. How epilepsy affects our lives is different, but the anxiety and fears are the same. It is that reminder that has me out of bed, dolled up and benzo’d out, standing before you tonight. It doesn’t have to be this way! The only thing standing between us and a scientific breakthrough is money for research. CURE is on the front lines of some of the most exciting research around, but perhaps even more important is that CURE is awarding these grants to the next generation of leading researchers. Providing these scientists with the funds they need to pursue their theories and cementing their pursuits in epilepsy research for years to come. Even after everything we’ve been through CURE still gives us hope.

Miss A aka CURE Champion helper, July 2017

There isn’t an hour that goes by that I am not paralyzed by the loss of our Adelaideybug but if her memory can motivate others to care about this wretched condition. If it can inspire donations to be made in her honor. Then I know her life was not in vain. We love and miss you so much Adelaidey - we will never stop fighting for you.

…I would be remiss at this point in the blog post if I didn’t at least leave you with a link to donate to CURE in Adelaide’s honor here. Or, to enter into a raffle Miguel and I are hosting to attend the final performance of Hamilton in Chicago on January 5th, here. Airfare and hotel included along with dinner at Chef Izard’s Girl & the Goat and Chef Bayless’ Leña Brava along with signed cookbooks from both chefs. All proceeds benefiting CURE :)