Hi, I’m Madhura, and until I decided to write for Caffeinated Caregivers, I hadn’t given much thought to how the role of caregiver became a part of my life… or that I grew into… or a little bit of both, maybe?
I have been lucky to have an exemplary mother in my life who was always present for me and my little brother. With her, I always did and will have a place where I truly “belong,” no questions asked.
When I was pregnant with my daughter, I dreamt of extending that same sense of belonging to her.
Unlike many parents I have met in this space, when my daughter was born, I got to stick to my birthing plan and had a long but uneventful labor. There was no NICU stay involved and the first few months of her life brought on nothing but the expected chaos.
The first signs of the fact that something was off, emerged when my daughter hadn’t managed to hold her head at six months old. That is when we started frequenting various doctors’ offices and labs. We enrolled our daughter into Early Intervention (Thank God for that!) and went on to find that every single scan and all the tests had come back “normal”. The real sh*t hit the fan, when she developed four different types of seizures and infantile spasms at the age of one.
But enough about her, because this write-up is supposed to be about me and my story with her.
By the time we started seeing an epileptologist and treating infantile spasms like the life-threatening emergency they are, I had become hyper-aware of the emotional struggle I was in. I struggled when being addressed as “mom” at every single doctor’s appointment.
“Hi, mom,” they would say, and I would try hard not to show my struggle on my face. “Yes, I am mom, but I am so much more,” I’d think to myself.
This was not the face of motherhood I knew or recognized.
Nowhere in my life had I seen a mother who had to do what was being asked of me. I questioned my feelings, because society told me that I am supposed to be delighted about being a mother. Once a mother, always a mother, right? Then why was I struggling so much with that title? Why was I so conflicted over something I had been looking forward to so much?
In the meantime, I had begun pouring out my thoughts and feelings in the form of blog posts. My instincts told me that it would be difficult for me to raise my child without a village which understands. And I had meant for my writing to educate those around me about my daughter’s condition and our situation.
It was in this process that I found a small, but very real, corner of the internet of fellow parents of medically complex children. And I learned. I learned a buttload and then some about the world of those living with rare diseases and disabilities. But more importantly, I learned about what it means to be a caregiver to those individuals.
Not only did I instantly recognize myself in that description, I also started noticing caregivers all around me.
Caregivers who were always in my life, but I had not truly seen! Caregivers whom I knew by their other titles – moms, dads, aunts, uncles, grandmothers, friends… It opened my eyes to the plurality of life.
I realized that I can be a caregiver and a mom, or a mom who is also a caregiver, or maybe mostly mom but sometimes caregiver. No matter what I was in any given moment, I could say one thing with certainty, that I need not be boxed into one single role or identity.
Knowing what I know now, I am comfortable with the idea that my role in my daughter’s life is more fluid than I originally expected it to be. Sometimes I am a typical mom who worries and frets over small things and gets mad at her child and brags about her child.
Other times, I am a caregiver, a medical assistant, a therapist, a nurse, scheduling assistant, project manager and so forth! I know now with experience that these identities can peacefully coexist within me.
Collectively, they make me more effective at being the mother I always wanted to be – a mother who creates a safe space for her daughter to belong, no questions asked.
Essay Author
Madhura Katre is a mom and caregiver of a 7-year-old girl living with Lennox-Gastaut Syndrome and multiple disabilities, she and her husband’s only child. She is a big believer of “Everything in moderation.” She loves coffee, books and hiking high up in the mountains with her husband. She is a full-time professional working in the FinTech space and a vocal artist specializing in Indian Classical Music.
