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The privilege of Caregiving

– Karen Karbhari

My journey as a caregiver began when my daughter was two days old. Kaneecka had hypoglycemia and hypocalcimia, as a consequence a big seizure.

As a caregive, we realigned, adjusted, repriotized and learnt to live a new normal. We spent more time in clinics and with therapists than in gardens and parks, which broke my heart. It definitely took a toll on our health too as caregivers. The stresses of doctor shopping, schooling, social life, each aspect of my child’s life also affected us not only physically, mentally and emotionally but also spiritually.

As a caregiver, we did not leave any stone unturned. We turned to Alternate therapies, numerology, homeopathy, ayurveda, diets…. The list continues.

Day after day, I have watched her struggle sometimes in silence but chooses to fight her battles each day with the same perseverance. She picks herself up again and again after each seizure and continues to live her life to the fullest. Her zest to enjoy each moment of life is a continuous source of inspiration to me. 10000+ seizures, numerous falls that took us to hospitals, restrictions on diet, after effects of meds and restrictions on life, but that has not been able to stop Kaneecka from being herself and doing what she enjoys doing most. Epilepsy turned our lives upside down and inside out for just far too long. Though this journey has been filled with intense fluctuating emotions of love, happiness, sadness, frustration, deep despair and now finally HOPE. It has always been a privilege to share this journey with her.

Kaneecka has taught us as a family the importance of being positive. We as a family have gone through a roller coaster, but her grit determination and positive attitude has made us stronger than ever. My special child, changed not only my life but also my values, beliefs, perceptions, and my entire world. She has changed the way I see the world today.

Caregiving is no favor nor is it a compulsion, it is a divine privilege that has been bestowed on a person by the Universe.

The truth of the matter is that caregiving is just about sharing your life with someone who has different needs as compared to mainstream perceptions. We have been brought up mainstream, taught about thinking mainstream, acting mainstream, loving mainstream and behaving maninstream. Being a caregiver is a chance of a lifetime to break out of the artificial circle of life and embrace life as it is.


The first step towards experiencing the joys of being a caregiver is the ability to accept life as it comes. Today is life, yesterday is gone and tomorrow is yet to come. One begins to accept and embrace time and circumstances for what they are. No hiding, no pretences just adulterated acceptance of the truth of the moment. One learns to accept life as it is supposed to be.


One is born in this world to be patient. If the Universe is ever patient with us, there is no reason for us to be impatient with others. Patience is the pillar to lean on that gets built over time for a caregiver. Being patient gives one a rare opportunity to be in sync with the heartbeat of time resulting in a clear mind and purity of intention.


The word sacrifice takes a different meaning. Sacrifice is no more connected to the other person. Sacrifice begins to become what you want to do for yourself.  ‘I am making this sacrifice for you’  turns into ‘I am making this sacrifice for myself, it makes a happier person ’.


Being a caregiver fine-tunes one’s sensitivity about others and what is happening around you. As you walk the hallowed path of being a caretaker, you begin to see life and what is around you for what it is. Being judgemental becomes alien as one sees life, its trials and tribulation through another prism making one a better human being.

The rhythm of the Universe

The strong will protect the weak, that is why we were chosen as a privileged few to be caregivers. We become a part of the rhythm of the Universe sharing its divinity and infinite wisdom through our actions.

Our lives will never be the same again. Our child made sure of that and I think we are all grateful for it. If anyone who knew us some years ago, will agree we are not the same individuals. Our child not only changed our lives but also changed our attitudes, our personalities, perceptions and our outlook of life. She made us better human beings. Today we see life through a different lens.

No matter how well educated you may be, our children continue to teach us daily new life lessons that no college or master degrees were capable of teaching us. So very proud of her.


Samman Association, the Mumbai Chapter of Indian Epilepsy Association, is dedicated to empowering people with epilepsy and their caregivers.







Samman Association c/o Adapt India, 1st floor KC Marg, Bandra Reclamation, Bandra West, Mumbai, Maharashtra, 400050.