After graduating college it just seemed natural to work in corporate America.  Being a first-generation college student I just thought this would be the natural path for me.  I had been guided through the college work development area that my strengths lie in the business arena of the health care field.  I agreed with that assessment.

I found myself in long-term care, my original passion. After being there and realizing I didn’t enjoy it I moved into corporate health insurance.  I stayed there off and on for 13 years and then moved to a different industry for a short period of time before landing where I am now…The Epilepsy Foundation.

In all the times I worked in corporate America while I worked hard, produced good results (most of the time except for after Lydia died), it was very rare I kind of always felt something was missing.  In many ways, I felt obligated to have a good job. I felt it was what I had to do.  Job, have health insurance for the family and come home. Do it all over again the next day. 

At certain times in my career, I recall looking at colleagues in meetings and watching them perform and just really get into their work.  Sometimes, if I was hungry, tired or just uninterested I wondered what drove them.  Here I was starving and they were still digging in with no end in sight. Were they truly so passionate about what they did or was it their paycheck and obligation that led them to be where they were?  They not only seemed dedicated but “in love” with the work.

And I often further evaluated by asking the question of  – how can you get that much into insurance?  Or the technology field, banking or whatever it was I was doing at the time.  Or was I just in the company of extremely dedicated individuals that although didn’t love the work per se, maybe just threw 150% in whatever they did. 

Now please (recruiters and potential future employers) don’t get the idea I have never loved my job or put my all into it. Not the case.  But what I’m talking about is TRUE passion.  Passion so strong for what you do that you believe in it WHOLE HEARTEDLY. That what you do can bring you to tears and frustration and extreme gratification – all in one day.  As if it is one of your children – you have that much dedication to it.    That you would skip breakfast, lunch and dinner for your mission  – because you could sit and talk about it and not even know you are missing all those things. 

Passion turned into purpose.  That’s what I’m talking about here. 

Purpose so strong you tend to jump at the chance to do your job – and fight the emotions internally that you might be away from family (your other purpose) too long.  Or that you might be abandoning other things in your life (friends, hobbies and other loves).  But, your passion is SO strong you put those things aside because you truly believe in the work you are doing.  AND LOVE IT. 

When Lyd died, perspective was staring me in the face.  Do what you love.  In fact, Tom and I both sat on the couch one day philosophically evaluating how we get to our passion. Does it find us? Do we look for it?  Does it fall in our lap? What is our passion? Will we know? All questions we wondered if we’d find answers to. 

We concluded that you are sort of supposed to look for it but for the most part it will hit you in the face when it comes.  We both hoped we’d find it sooner than later because we knew we needed to do what drove us. Life was too short to just be. To “just work”. 

One late evening in the fall of 2017, just 6 months after starting a new job, I went to LinkedIn jobs and typed in epilepsy.  There it was – Director, SUDEP Institute, Epilepsy Foundation.  It was 10:30 at night and I told Tom I had found it.  I had found where I needed to be.   I actually felt the description was written just for me.  Like they knew me when they wrote it. 

The next day I sprung into action contacting people I knew connected with this role. I started researching board members and how I might become an insider to this job.   Scary how the stars aligned and many of the folks associated with this role were people I knew.  I reached out to my network and was able to secure 10 letters of reference from former managers, colleagues, a reporter, politicians and individuals in the healthcare space that I had worked closely with before and after Lyd passed. 

3 months later, 40 hours of prep, endless interviews and travel to meet people to discuss the role, I was offered it in December of 2017. I started it in January 2018. Luckily, the learning curve was small.

Relentless in the pursuit of the role I am also relentless in this role.  And have been for 18 months. I travel more than I ever have in a job.  I can be gone a day to almost 5.  My husband picks up where I leave off and manages the family.  I told him when I took the job “it is my time.  My time to do what fuels me.  My turn to fulfill my passions to feel purpose.”  (he has been living his passions since we met – he’s a dreamer who goes after what he wants…NOW).

I’m writing this after a 5-night stint on the road.  I was invited to be a keynote speaker at a gala of 280 people and then visit research and epilepsy centers.  I saw a lab and talked with physicians in this space for 2 days after the gala.  It was exhausting but exhilarating.

As I was endlessly “selling” why medical professionals should talk about death in epilepsy with their patients I realized I now have the answers to all the questions I had for other colleagues throughout the years.  THIS is where I’m supposed to be right now.  I’m truly passionate about this topic. I truly believe in what I’m doing to help others.  I put 200% into this because I believe in the message and the mission.  I have families counting on me to be their voice and change the landscape of this discussion and that weight sits heavily on my shoulders each day. But, while heavy, its ok – it fuels me to keep going.    

Beyond that however, in a single conversation I get to talk about one of the great loves and teachers in my life – my daughter.  Where do you get a job like that?  I often feel her spirit in these conversations and am so thankful for the strength I feel when speaking to others.  In a single conversation I also get to laugh and cry and it is all ok because it is REAL. 

Is it always easy? No. I wouldn’t say death is an easy matter – whether it is your own child you constantly think of or others who reach out to you about their loss. And I often find I have to find a quiet space or time to NOT think about my job (yes, this is hard!). I have learned that as hard as it is this is a marathon and not a sprint and to find space when I need it. Recharge, regroup and re-prioritize.

Someday, SUDEP will be eradicated and I will be out of a job.  And that is ok because no one else will be dying to this devastating disease.  But, I’ve realized I need to be in a place that moves me.  That takes my passion and makes me feel purposeful.   This is where I need to be.  More importantly, this is where SHE wants me to be right now. 

Life is full of small journeys and this is just one of the roads on the journey.  I hope when my kids look back they admire that Tom and I both did what we loved.  We put all we have into making a difference for them, for our own lives and in the lives of others.   

But, I get it now. I get it all – I get how people throw themselves into what they do.  They truly believe in it and want to make a difference. A TRUE difference in the lives of others. 

And in the end, I hope Lyd is smiling and saying: 

“Mom, you always had it in you.  From the moment I was placed in your arms you had it in you.  You just needed me to show you.  To show you perspective and passion.  You needed this journey to see it.  I knew you’d take the lessons you’ve learned from me to do even more.  And I’m so damn proud of you mom.” 

I miss you every day sweet pea.  With all my heart and soul do I miss you. But, I’m so thankful you were here, and I was chosen to be your mom to love and learn more than I would have had I not been blessed with you.  I’m so thankful you are my daughter.  And I’m so thankful you continue to show me my way.