The Journey Begins

“Begin as the beginning and go on till you come to the end; then stop.” – Lewis Carroll, Alice in Wonderland.

It all begins with a boy called Joshua, fondly called as Josh, born blue as ice and defying every norm since then. Josh is my first born and as every first baby is eagerly anticipated, he was so welcome into my world. However, the news that Josh was born with a murmur shook my new mommy world and smashed all my dreams of a happy motherhood, full of instagrammable moments. I was dreaming of maintaining a baby book  and had scoured for cutesy ones, which were well beyond my budget, but firmly ensconced in my checklist of things to do as a new mom!! It wasn’t easy to accept that I would not be that mom who could proudly display her cherub. I broke down bitterly, brain frozen and all my years of training as a nurse seemed like a joke, as I couldn’t remember anything useful to my predicament at that moment.

I remember my journey to the ICU to meet my baby for the first time very clearly, like ti was yesterday. A long , cold hospital corridor that seemed to be echoing with my dreary thoughts and wild imagination. As I was wheeled into the Neonatal ICU, I sighed as I saw a row of beautiful babies who were in for a cursory ICU observational stay. I picked out a scrawny, fussy baby in the middle of the row, who seemed worse for the wear, every grimace per second and decided it was mine. As I reached its crib, the nurse yelled in Marathi, “Aho!! He tumcha baal.” she was pointing to this Adonis of a baby, beautiful, bonny, cherubic and completely unfazed by his surroundings! I gaped. I did. Like a hungry baby bird wanting that morsel of satisfaction that my baby was perfect and the diagnosis a mistake. There he lay, arms outstretched, raised above his head and fists curled with every inch of him so beautiful and intact. I was awestruck by the thought that I had made this perfection and boy! did he look so ready to take on the world. His complete lack of disregard to his body’s deformity instantly gave me peace. The fact that he ignored his negative and was revealing in his birth, his life, completely rejuvenated me. 

I will fight. The thought instantly popped into my head as I gazed at my boy, lying peacefully in the incubator. I cooed softly, “Hi Joshua, Mumma is here” and rubbed his knuckle with my forefinger. Josh stirred, opened his eyes, looked directly into mine and grasped my finger tight!! What a grip! I had no doubt then that Josh was born strong enough to deal with his infirmity. My resolution doubled and I have not looked back since.

“But how did you think of Team Josh?” “What prompted you to start?” “Why do you do this?”

Long story and several miracles later, I faced an unfortunate incident with Josh’s followups. It was just before his birthday in 2016 and a doctor felt Josh needed Surgery just two years post his last Open Heart Surgery in 2014. I thought everything we had worked and prayed for nothing and my boy had to be traumatised yet again. To be safe, we went in for a second opinion with a specialist in Mumbai. It was a nerve-racking few days as we celebrated Josh’s birthday and then headed for the appointment. It turned out the report was completely wrong!! Wrong, just wrong and I would have blindly agreed to an unwarranted surgery, just based on the reputation of the doctor. This incident made me realise how vulnerable we parents are and how our desperation to ensure our children’s good health leads us down a rabbit hole. It was then that I identified the need to educate parents, to provide coping skills and to raise awareness about CHD and its treatment. It then struck me that awareness by itself would be boring. Nobody wants to care about something that isn’t relatable to their set of circumstances. Et Voila! Selfie for Josh was born, cashing on the selfie craze that had just begun. 

In order to take the event forward, I would need to first disseminate information and while discussing with my husband Shai on the family WhatsApp group called Team Josh, we decided to name our initiative the same. After all, this is a family affair !! Team Josh is just us parents reaching out to other families and parents who are coping with CHD as a constant in their dynamic. We hope our story encourages you and motivates you to persevere and keep your hope intact. From our family – Team Josh to yours, here’s to celebrating Life with our heart heroes!