It took a while..

April 20, 2017- I became mother to a beautiful baby and my life changed forever.

I and my husband had been married for almost a decade and were ready for the next step in life. We had lived in two countries, were doing well in our careers, we traveled a lot, had a wonderful dog and a beaming social life. So when we finally decided to embrace parenthood, we were happy and ready. We had the perfect plan for our perfect life. “He and I are going to travel the world”- I’d beam and my husband would remark on how he would make sure our son is not a vegetarian! We’d imagine ourself as easy going and “chill” parents as we are both pretty easygoing in general except for my weekly house cleaning and “KonMari” sprees! Life seemed perfect and we were ready to embrace it will full abandon!

My pregnancy was perfect- I was eating well, I was happy and upbeat, I did yoga every day, took all my vitamins, was killing it at my job and even had the perfect glow. Heck, I even went for an all girls Euro Trip with my best friend in my second trimester. I was a “poster child” for a mom to be, my doctor would often joke with me.

The morning my son was born, the atmosphere in the room was so much fun. My husband was cracking jokes on an all nighter I had pulled, my mom was laughing at his lame jokes and I was busy listening to “shape of you” on repeat because clearly my hormones were still making me crave things. And amidst this happy chaos, our son was born. A head full of hair, big black eyes, tiny toes and tiny hands…

..and a bump on his back.

I was very tired so for a moment nothing registered. Until, the music got dimmer and the silence got longer and I saw the doctors and nurses frantically making notes on things I didn’t understand. They put my baby on me and started talking to us about our options. “It likely is a cyst that just needs an ultrasound ”- my favorite nurse whispered in my ear to comfort me. Soon after, we were bombarded with a ton of information which neither of us could comprehend, process or register. We were tired, ecstatic and also clueless. Amidst this, we went through the standard days at the hospital- learning to handle a newborn, finalizing a name, clicking baby pictures and basically just recovering from everything that had just happened. We were referred to a neurosurgeon , our 7 day old son underwent his first (of many to follow) MRI scan and we learnt that he would need a spinal surgery- as soon as possible. Our son was born with Lipomyelomeningocele- a rare form of Spina Bifida. In short, his condition would affect his ability to walk, run, jump and play- like regular kids. All in a matter of 7 days- when we had barely even celebrated the birth of our newborn.

Usually the one to not take medical scares too seriously, my first reaction was to ignore all this “unnecessary information” and just get some moments to be with my new born. I was in denial and not ready to accept that our life was not going to be “normal” anymore. So I did everything to ignore the diagnosis that had been handed over to us. I wasn’t ready to take it. But it did not change anything. Absolutely, nothing!

What followed in the next few months is snippets of some very terrifying moments- weekly trips to the neurosurgeon and orthopedics offices and an insane amount of paperwork prior to the surgery. At 3 months, my son got a laminectomy- complex word for a large surgery . In a parallel universe, as parents to a 3 month old, we’d probably be getting used to the routine with a baby- but here we were, sitting at the pediatric neurosurgery unit, next to our unconscious baby who wasn’t exploring his surroundings like a typical 3 month old- but was rather covered in cables and bandages. The good part is, he will not remember any of it. The bad part is that I’ll never forget any of it.

The months that followed, went by with us trying to make sense of what was happening- we researched; got second opinions; educated ourselves; took our baby for physical therapies. We learnt on the job- of being parents to a child with exceptional needs. We learnt on the job to become exceptional parents. In the process, we lost out on several “friends” who didn’t know how to cope with us and our inability to have fun and our unavailability to attend events like we did before. We had changed- we weren’t fun anymore.

I became increasingly angry- at everything- God who did this to our baby, doctors who weren’t doing enough and a world that seemed so normal and aloof . “Why me, why us?”- I’d yell to the universe everyday but I never got any answers. I went into a spiral often- I questioned everything, blamed myself for being too carefree, kept going back to my pregnancy memories to figure out what I did wrong- I cried at everything but nothing changed.

After my maternity leave ended, I resumed work and my life was more consumed than ever- Between work and doctor and therapy appointments on weekdays and additional therapy on weekends, the days just didn’t seem to have enough hours. It helped keeping thoughts at bay. But the nights, seemed long and lonely as both of us would sit together- too exhausted to think anymore. Too Sad and heartbroken..

Our son continued to grow and thrive. He was a happy baby- didn’t give us too many sleepless nights, was mostly happy eating everything and was a general delight to be around. His teachers at day care loved him and told us stories of his resilience every single day! For every thing he could not do, he tried harder, until he found a way. So he crawled in his own way, cruised in his own style and basically couldn’t care less about his “so called limitations”. He was having fun trying to move- even though his peers were already running. He never complained, he never got angry or frustrated- he was just happy to try over and over and over again. Over time, I got tired of being angry- the same questions to the universe got boring and my baby’s positivity started rubbing off on me. Gradually, I started feeling grateful for what I had instead of what I didn’t- for all the progress Avyan was making and for all the lessons in living a good life he was teaching me unknowingly. I had a rockstar baby- what was I thinking? Who was I to give up on him?

Very slowly, I started accepting our new normal. I decided to not to feel sorry for what had happened- It was still hard for me to not burst into tears every time some one asked me about Avyan- but soon those tears also started vanishing. Everyday, I saw my son, more determined than ever to beat the odds. We took him to extended therapy sessions, worked really hard with him and he started walking when he turned two- much to the surprise of our orthopedic surgeon who told us that our son may never walk.

Avyan will turn 3 in April- He’s a typical toddler, going through terrible threes, loves music and loves performing a concert for us every day, speaks two languages, loves soccer, says hello to plants, loves dogs and force kisses our dog( and every dog at the dog park)every single day.

He goes to therapy thrice a week..He wears special shoes..He has a wobbly walk..He hums when he walks, He’s attempting to run..He laughs out loud every time he falls while attempting to run

And my husband and I?

Our life is full of therapy appointments, doctor appointments, hospital trips and complex diagnosis. These have become our normal. But we have embraced life again with all its curveballs and uncertainties- we have picked up our careers.. we have resumed our travels.. we are focused on building meaningful relationships… I’m living my dream of traveling the world with Avyan and my husband is striving very hard to bring Avyan to his non vegetarian camp- this is our normal and we are trying to have fun with our new normal!

In the grand scheme of things, we are doing well- guess really well!

It just took me a while..