In her own words –
“It is 2015, I’m pregnant with my daughter, trying to navigate my next career move and pondering the age-old interview question: “Where do you see yourself five years from now?”. I don’t know that I ever settled on an answer but I do know that it wasn’t: having just moved back to the East Coast after spending four years in Chicago with my husband playing the title role in Hamilton: An American Musical, trying to figure out what this next iteration of my life will look like after I abandoned my career to care for my medically complex daughter who passed away five days shy of her fourth birthday – and there’s currently a global pandemic. Yeah, that wasn’t what I envisioned. But it’s what happened.
There is not a day, an hour, a moment that passes that I don’t wish my baby girl, Adelaide, was still with us. I hate how she suffered, from epileptic seizures, mast-cell attacks, respiratory issues, frequent hospitalizations, and pharmaceutical side effects. I try to find some solace in knowing that she is finally at peace.
The last four years of my life were dedicated to hunting out the best care and most promising treatments for Adelaide. To this day we still don’t know the root cause of her epilepsy and numerous other complications. Unfortunately, this is the case for a majority of individuals living with uncontrolled epilepsy. Without a true diagnosis we were left treating her symptoms and became very talented at the medically complex dance: one step forward, two steps back, two steps forward, one step back. The last year of her life we had stopped making any steps forward and refocused on keeping her comfortable. We were always on alert for seizures, her breathing to grow faint, her color to change. We spent about one week every month in the hospital. I knew this wasn’t “typical” but it had become our normal. The schedule, the people, the community – it was bizarrely routine for us as it is for too many families. Then, with one last breath, everything changed.
Our society has long used careers and financial earnings to qualify our perceived value. Leaving my bread-winning position in our family to be a stay-at-home mother/nurse/pharmacist/therapist left me depressed and resentful of my husband’s thriving career. Clearly I love my children, and I never would have let anyone else manage my daughter’s care, but having to face the question, “what do you do?” whenever we met someone new, sent me spiraling. It was time to re-negotiate my own self-value with the world. Through therapy I was able to find my own purpose and fulfillment in this life that I didn’t choose. I connected with Citizens United for Research in Epilepsy (CURE) and joined their board, I started my blog “Inchstones”, and currently host CURE’s podcast, “Seizing Life”.
So, no, there is no way I could have envisioned that this is where I would be five years later. And, no, I’m not going to say that I wouldn’t change a thing. But I am proud of who I am and what I accomplished alongside Adelaide. Today, when someone asks what I do I say that I am a writer and special needs advocate with pride. Remaining ingrained in this community brings me incredible comfort and fighting for those still on the medically complex journey gives me purpose and hope. I cannot allow Adelaide’s struggles to have been in vain. So, I will squeeze all the lemonade I can from these lemons. You can also be sure that I will never be making a five year plan again.”
Participants in this project will be supporting the efforts of Dress for Success Worldwide – Central. We are all stronger together and it is my sincere hope that we will be inspired by each other’s stories. Now is the time to celebrate as well as encourage one another. Tell your story!