Happy new year! Much like Adelaide’s birthday, a new year brings a mixed bag of feelings. Sure, I try and remain hopeful that this will be the year of a medical breakthrough for her but also just as prominent is the honest understanding that significant time with a special needs kiddo is going to come with serious challenges, stress and heartbreak. Adelaide’s health continues to decline and without a diagnosis or prognosis we are forced to sit and wait to see if the next new med will help or if the new settings on her bi-pap ventilator will allow her to make it through a night without her alarms going off and her lips turning purple. But as long as she is fighting so will we. So, yesterday, we headed back into the hospital to try the next new med. Lucky number 12. I’ve realized that’s one of the key parts of this special needs parenting thing, you just have to keep moving forward, focusing on whats next. Today, it’s another new med and you know what? I’m grateful to have something else to try. Will it work? I’d be ignorant to not acknowledge that the odds are against, like 98% against us, but at least we can try. There is comfort in just doing something.
At times like this it is also important to remind myself that I can’t tie my personal feelings of success, productivity or fulfillment to Adelaide’s health. Whether she improves or not is out of my control, all we can do is come up with a plan with her doctors and then come up with another one when that one doesn’t work and so on. Creation of the plan I can control, the outcome I cannot. Which means my barometer for success and satisfaction has to come from somewhere else in my life. This is where this blog and our various fundraising and advocacy efforts come into play. Speaking at events and continuing to raise epilepsy awareness, while unquestionably inspired by Adelaide, does not depend on her well being to bring me satisfaction. Furthermore, just because Adelaide’s development is at a standstill (or decline) does not mean that I must also remain in a holding pattern with her. This was a tough one to come to terms with but I am allowed to continue to grow as a woman, advocate and human regardless of her condition. So, when CURE came to me last fall asking if I would host a podcast they were launching it did not take much consideration before I responded with a resounding, “YES!”
Talk about growth and challenges! Through our journey with Miss A we have been fortunate enough to do a fair number of interviews, but I have always been the interviewee not the interviewer. This called for some serious Oprah binging (and maybe some Jonathan Van Ness for flair). Suffice it to say that I am so stinking excited to finally share Seizing Life with all of you when it goes live later this month. I am honored to host this weekly podcast about the real-life experiences of those with epilepsy, their loved ones, and the medical professional combatting this condition. Our hope is that Seizing Life will inspire empathy, provide resources, and get the word out about the critical need for more research and better answers. Basically, imagine this blog but as a 20ish-minute interview. Filming has been such an incredible experience and I know that sharing it with the world will be even more rewarding.
Through this podcast I have been given an opportunity to continue to educate, relate and advocate - to continue moving forward. Look, I can’t spend too much time imagining what 2019 holds for Adelaide. The rational side of my brain wins the fight against my dreams for her every time. But with Adelaide in my heart I get to sit across from amazing scientists, clinicians, super parents and advocates and share their stories and knowledge. What an unbelievable way to honor my inspiring daughter. To make sure that her battle is never in vain.
With that in mind I want to take a moment to say that I am so grateful for every single one of you who read this blog. Through each of you, and the awareness and camaraderie shared, I know I am building a legacy for Adelaide that will help make all of this feel worth it. I am also grateful to CURE for trusting me to host their podcast and giving me the creative bandwidth to put my stamp on it. I also need to give a shout out to the amazing crew that makes it all happen from initial contact with the guest through to production, editing and sharing. Though these efforts are unlikely to help Adelaide improve, it gives me the strength I need to put one foot in front of the other and to feel productive and satisfied. It gives the me opportunity to seize life (see what I did there?).
View the introductory episode of Seizing Life and sign up to receive updates when new episodes are live here!