I never wanted to be a stay-at-home mom. Not as a little girl playing with dolls and certainly not as a 20-something finding my way. Up until Adelaide was diagnosed with epilepsy and Miguel booked Hamilton, I was our family’s primary bread winner and I loved it. In fact, I was out with co-workers, celebrating my last day at one job and about to take a new step in my career, when Miguel called to tell me that he had booked Hamilton and we were moving to Chicago. Exciting? Yes! Moment of panic as I realize my entire life is changing? Hell yes! Given Adelaide’s recent epilepsy diagnosis and Miguel’s new schedule, it struck me on the train ride home that night that I would have to turn down my new job and would not be working again for the foreseeable future. That summer I had my hands full managing Adelaide’s increasingly complicated medical care and organizing a move from NJ to Chicago which included finding our new home, a school for Jackson and new doctors for Adelaide. It wasn’t until we landed in Chicago that my new life really hit me… and it hit me hard.

We were meeting so many new people and everyone would ask what I did for a living. A common conversation starter, harmless, right? For someone who had wrapped a good chunk of her identity up in her career I stumbled through answering:

“Well, our daughter is sick and she needs me at home right now so, thanks be to Hamilton that we can afford it”. 

“But what about when she’s better?”

“…well, I’m not sure that she will get better.”

That part stung on so many levels. Of course no one wants their child to be chronically ill but admitting that any dreams I had for my own career and future had been indefinitely suspended was also a tough pill to swallow. 

The frequent hospital visits weren’t helping either. When staying inpatient, your only identity is your relation to the patient. Nurses, doctors, therapists, everyone called me mom. 

“Mom, how is Adelaide doing today?” 

“Mom, can I get you anything?” 

“Good morning! Are you mom?”

‘Are you mom’ was such a common question, still is. I’ve wanted to scream: “YES! Yes I am Adelaide’s mother but I am also a whole lot of other things!”. Its not important for them to know my name of course, Adelaide is what matters. I’m not suggesting otherwise, but after spending a week, two weeks, a month in the hospital, that loss of identity takes a toll. Now, throw all of this into a pot with a husband who is at the pinnacle of his career, receiving rave reviews and standing ovations. While I hadn’t been taking bows to thunderous applause, the positive affirmation I had received from my bosses at work was gone. There was certainly no one telling me great job after I threaded an NG tube through my daughter’s nose into her stomach. Can you smell the resentment brewing yet? 

With that negativity boiling inside, I made the move to find a therapist with whom I could work through it all. Once a week, being able to unapologetically get my frustrations out of my head, helped. Through these sessions I realized that a lot of my resentment came down to a lack of control. I didn’t choose this new life and felt that I had very little say over my future. Rather immobilizing for someone who is used to calling the shots. Forget a five year plan, I was now operating on a five hour plan - if it was a good day - and my success in life could not be connected to how Adelaide was doing because her health was out of everyone’s control. BUT I started to learn that just because this was not the life I had envisioned that didn’t mean I couldn’t mold it in the places where I did have control.

Enter CURE and the ACLU. Adelaide’s care is a full time job in and of itself. Prior to having a nurse in our home I could barely fit in time for laundry, (I still can barely fit it in but thats more just because I hate doing it), but I could find time to shoot off a few emails or take a call while Adelaide was getting a tube feed or napping. Because all the work has been done on a volunteer basis, no one can get too upset when I ghost on them because Adelaide is back in the hospital, so it all works out! Since we’ve had our nurse I’ve been able take on more responsibility with these organizations and, as I mentioned in “Permission to be happy”, I am more fulfilled by this work than I ever was in my former career. Two years later, I no longer feel resentment toward Miguel or anyone else for this new life. In fact, when Miguel has to leave for work I sometimes wonder if I don’t have the better side of this deal. But, wow, it’s taken me a long time to get here. 

So, hi, my name is Kelly Cervantes. Yes, I am Adelaide and Jackson’s mom and Miguel’s wife but I am ALSO a medical advocate and caregiver for my daughter, a board member of both CURE and the ACLU of Illinois’ Next Generation Society. I have a blog that I love to write and am always looking for opportunities to connect with new people to share our story and educate others about epilepsy and raise awareness and funds for epilepsy research. I am the COO and co-CEO of the Cervantes Family and damn proud of it. Adelaide’s epilepsy consumes my life, it is unyielding and ever present but I will not lose my identity in this fight. Not today, anyway.