Seven years ago today, Kiran was admitted to the hospital for an unplanned stay that would last an entire week. He is now seven years old, and that has still, to date, been his only unplanned hospital admission.

I am so grateful that the hospital isn’t a regular part of our lives at this point. I am thankful of all I have learned and my ability to care for him at home when he is ill – but mostly, for the fact that he has remained medically stable enough to not require oxygen or other hospital-grade care.

I remember, as we approached the end of that hospital stay, the doctor asked me if I was comfortable taking him home or if I wanted him to be monitored for another night or two. I opted to have him stay in the hospital for monitoring (I am one of those moms who rarely leaves the hospital room, so that meant another couple nights of sleeping on the hard couch next to his bed). I wanted greater reassurance that he was okay, and I struggled at that time trusting that I would know if something was wrong again.

That was the beginning of quite the year for Kiran. We monitored as he went further and further into heart failure, being assured by the doctors we wanted him to grow as big as he could, as long as he remained “stable”, before open heart surgery. After several ER visits due to the same types of issues that landed him in the hospital that January – the fast respiratory rate, the tracheal tugging and chest retractions – I learned very quickly what his ever-changing new normal was and that it was just par for the course as we waited for him to worsen before he could be operated on.

When we traveled to California for his open heart surgery, a fellow heart mom met Kiran for the first time. She asked if his breathing always looked like that and commented that it would terrify her if her child’s breathing looked that way….

A typical oxygen saturation is 98-100, and by the time Kiran was getting his surgery, he was hovering around 80. We were reassured that this was okay – and so many factors had to be taken into consideration to be sure surgery could be as successful as possible – but his little body was certainly putting all the energy into simply staying alive.

It’s hard to watch your child struggle and worsen, knowing that it’s necessary for the end goal of a successful surgical intervention. That first year of Kiran’s life, I watched the medical things as already described, but I also watched him lose skills – he stopped rolling over, sitting became more challenging for him, oral eating practically non-existent by surgery time. His hair was so thin, and he had no teeth – like I said, his body was putting all its energy into pumping blood and breathing. Into keeping him here with me.

I’m thankful he’s still here with me.