Happy women’s month, phenomenal heart mums!

Happy women’s month, phenomenal heart mums!

You deserve the highest lifetime award.

13 years in my role as a heart mum… I am a Seshma Bhoopal- a CHD mum, with my priority being my selfless care to my child Ayaan Bhoopal.

My role is a combination – a nurse making medication daily in the mornings, a house manager ensuring my home is in order, a schoolteacher in the day, an extra mural teacher at school after school, a homeschool educator and facilitator to Ayaan, a mum to Ayaan, Akhil and Mikyla, a google expert on medical terminologies and conditions, and a family member and friend. Time is always a shuffle and race, with not enough hours in the day, but yet I find a way to fit in a structured routine for both Ayaan’s needs and myself. I am a mum who holds the lifeline of Ayaan Bhoopal, making sure his every need is met in time. Heart mums have a responsibility far beyond what meets the eye. We have to sacrifice our own lives and give priority to our child who depends on our best efforts, to survive. Heart mums become the voice, the advocate, the caregiver, the manager of every situation and decision, to keep their child well and alive. In Ayaan's journey, we can never take any moments for granted. We never know what the next day holds for him. Tomorrow is never promised, as he is a living miracle each day. From 6 weeks old, and his sudden diagnosis, life changed 360. In a split moment everything changed and to date, I live with extreme fear but hope, and gratitude. It was a whirlwind so fast yet swift and to date, the storm continues, in the under force, face of the unknown. There were many moments, many times, that it could have been the end, but we were blessed with Ayaan's will to fight, the best medical team and prayers, that kept taking us through the complicated moments. The darkest of moments – hospital trauma – changes people, forever. Hospital life is a different world compared to the world outside. We see life-changing scenarios, and are witness to the struggle of life and death.

There are so many moments, days, experiences that hold extreme pain, that is hard to explain. The worst fear ever, and hardest parting, is each time I had to leave Ayaan in theatre, hold, him till the anaesthetic sets in, kiss him well, walk out for Dr's to continue with the operation, and not knowing of the crucial outcome. Although I always trusted the doctors and medical team, all Ayaan’s operations were a high risk due to how complicated his condition is.

Handing my child over....in theatre, watching every minute on the clock, running up and down to the theatre door in anticipation.

That for me, used to be the hardest moments, ever. Will this little baby make it out alive from theatre. ICU , and open-heart surgeries, the long waits, outside the theatre door, watching the time pass, and uncertain of the outcome. ICU visits, the unpredictable moments, from one visit to the next, is the height of fear and anxiety. One moment there would be good progress and the next a crash, and you have to re-strengthen; to fight harder for that little boy to keep fighting too. Watching a child , go through 6 open heart surgeries, you learn very fast , how to survive as a parent. I had to be brave, strong, and full of hope and smiles, to transfer that good energy and positive spirit to my child. Seeing a child with large cuts plastered, pipes, needles, and medication lines, the ventilator and monitors, all keeping this fragile little body alive. The night before surgery would be a night of my pleading to God to save my child. A night, where I'd hold Ayaan tightly and just wish for the moment to never end. From a baby, each time he would hold my hands there was a look he would give me, that spoke a thousand words, almost a gaze, of reassuring me, that he will be ok. I had to always reassure him, that he is getting the best help and I was so proud of how strong he was each day, to fight his condition bravely, and each time, be victorious and leave hospital to go home. Each open-heart surgery, Ayaan would spend 4 to 8 weeks in hospital. Every night, during those times I would call at several hours, to check on his wellbeing. And no two days were ever the same. As Ayaan grew, it became harder, leaving him in CTICU, after being unconscious from surgeries. He would cry and I would have to reassure him, that I wait right outside the door for him. Seeing my child, cut through vertically down the chest and side, and pipes and chords, and surviving on a ventilator and life support, is a sight that changed my view to life. You learn to leave a material world and focus on a more spiritual path and the value of life itself. For all of the 6 open-heart operations, and being separated from Ayaan, I’d live for and just watch the time for each visit. Those 3 times a day, seeing my child, was the most priceless seconds and minutes. In times when you want to scream out and cry, you have to learn to stay composed and strong to deal with any news that the doctors would give you. The race down to CTICU, the smell of the sanitizer, the ringing of alarms on machines as the vitals changes and watching the beds and parents. Sometimes the beds becoming empty, due to not making the fight, are all traumatic; that only parents who experience this, will share the height of emotional trauma. Tests and results, and eagerly waiting for Dr's feedback, are all moments of learning the art of patience and handling the situation, in the best interest of my child. Most times you have to put emotions aside and think rationally to assist the process of treatment and care. Ayaan was fortunate to have Dr's and nurses who would frequently update me and always made him feel loved and cared for, both in CTICU and Paeds Wards. I'm forever indebted to the best Dr's, that always humanely helped us walk this heart journey together. I honestly believe that Ayaan's doctors are the angels that God kept working through and giving him the gift of life, each time. Thus to date, hospital, is our home away from home. I have a whole Sunninghill hospital family who always welcomes Ayaan with so much love and admiration for how far he’s come. Ayaan gives hope and inspiration to every medical situation where chances of survival are bleak. Ayaan survived every odd, and every adversity. He has so many clinical conditions that affect him, yet he lives life strongly with the most amount of positivity. Yet, to date driving Ayaan to hospital is unbearably heart-breaking and bringing him back home is the greatest gratitude. And the journey just continues day by day, and I pray that it's a long journey, with smaller challenges and healthier days for Ayaan.

I will always fight, every battle with Ayaan, right by his side. I will hold his hand tightly, and always make sure that his life is filled with the best that he deserves.

I am a proud heart mum and I love my role. The rewards outweigh the challenges and with Ayaan as my inspiration, I am a super mum of a brave heart hero, who has learnt and grown in leaps in my 13-year heart journey…

Ayaan's life is a unique journey – a story of the heart. 13 years, 6 open heart surgeries, many other procedures and operations. You can be the viewer and critic of my role.

The depth it takes hides behind our smiles.

To all the heart mums out there – mums with children with medical conditions, mums of new heart babies, mums of many older heart children and mums whose heart angels have gained their wings:

You are the most phenomenal women, who deserve a lifetime award today on woman’s day, for woman’s month. You are indeed the daily heroines, advocates, ambassadors, influencer’s, role models and ordinary females in extra ordinary roles.

As a heart mum, I salute you and encourage you to be amazing no matter what hardships you encounter. You will be judged, criticized and challenged but stay focussed in your unwavering path. You have the strength and courage beyond and experience that makes you not just a recipient but an award winner. We might never make the platform, ramp or stage , but we are the most deserving award winners.

I am certain you have already learnt the skills of turning your adversities and challenges into positive experiences. Keep your hopes high and beliefs strong! You are honoured, respected and given the highest recognition for your role in society. Happy woman’s day super heart mums.

May you forever know that you hold the highest award, blessed in the eyes of your child and God.

Regards

Seshma

Pictures shared with permission.