Happily married to a loving and doting husband since five years and blessed with an affectionate and adorable son, aged four years, my life was perfect...
But like they say you have to pay a price for everything.
So did I. Never in my wildest dreams had I dreamt about what lay ahead of me.
We had bought our own home in the city of dreams and were planning on having our second child. But, my dream world collapsed one afternoon while playing hide and seek with my son.
I fainted. He stood next to me innocently, thinking it was an act and that I was joking with him.
What followed were numerous visits to the doctor accompanied by never ending tests and scans. Finally, I was diagnosed with Systemic Sclerosis which is an auto immune disorder( When the body's immune system turns against itself and attacks healthy cells by mistake ). It had attacked my lungs and around 35% of my lungs had become stoned. My entire family and me were in shock. It was unimaginable.
All that came to my mind was - What?? How??When??
Till today I don't have all the answers. And the one question that still haunts me is...why me?
My story is definitely about my struggle to accept this phase of my life and how life changed after it . But, it's not solely about that, it's much more.
I was put on steroids immediately ( still take them and will have to continue lifelong). I had always been slim but I started gaining weight gradually (it's very difficult to shed it even now). I was always breathless, couldn't climb stairs, couldn't brisk walk, forget running and playing around with my son. All of this and taking 10/12 tablets a day used to make me choke on my tears. I was also on an immuno-suppressant because of which my immunity was always low, leading to many infections. The gradual effect of steroids on my bones led to osteopenia(onset of osteoporosis) of wrists. The intake of so many medicines made me very irritable.
It was arduous and stressful but I managed because I had my husband right beside me. His sole aim in life seemed like taking appointments and getting my tests/scans done every 3 months. He consulted every pulmonologist, rheumatologist and cardiologist in town. He cared so much for me that words fall short. Him, working in one of the best hospitals in India made things much easier to organise. But, the agony of going through the pricks and tests every 3 months was painful and difficult.
Every time I headed towards the hospital, I would be overwhelmed and uncontrollable tears would roll down my face.
6 years down the line, I had somehow accepted the situation and my life became normal (with weekends, shopping, movies, malls, holidays, weddings and family gatherings) but there was one thing which lingered constantly on my mind and in my heart...
The urge to have a second baby.
One thing the doctor had repeatedly emphasised was about not conceiving again, as it would put more burden on my lungs and could also worsen my disease. When I was diagnosed, we had been planning our second child, so being told that I should not consider conceiving, shattered me completely. At every consultation with my doctor, I would eagerly wait for the magical words
" Yes "...Alas, I would be heart broken each time.
Days turned into months and months turned into years. After 6 years of SS along with all the persuasion possible, in 2014 he finally said the golden words "Lungwise I think you can handle a pregnancy". Although he was cautious, he atleast gave me a go ahead. I was completely over the moon. From that very moment all I ever prayed for ( though I had been praying for it since forever) imagined, hoped, visualised, thought, envisaged, dreamt, daydreamt about was my pregnancy...
Holding my baby in my arms!
Being on steroids for so many years, made conceiving a complicated task and so began another round of doctors, tests, scans and a whole lot more. After going through a small procedure, finally the day I had been waiting and wishing for since the past 7 years arrived in August 2015.
I was pregnant ...Gosh...it had actually happened!! I would have danced all day and all night if my lungs gave me the liberty to do so. God had heard me...I was carrying my baby...
As expected, I had a very difficult pregnancy. Even after being forewarned by my doctors, each day was a struggle. I was on bedrest after a surgery (cervical stitch)coupled by pregnancy induced cough which kept me awake throughout my 2nd and 3rd trimester( which had its side effects of severe incontinence and imagine having diaper rashes).
Later, I was on oxygen support since my oxygen saturation dropped to 85% in contrast to a normal saturation of 98%. Using the washroom became a task. Taking a bath would wait. With an extended oxygen wire along with the support of my husband/son/my help I would still struggle to use the washroom. Nights became a nightmare as I would only cough. I could not lie down completely on my back for almost 25 days as that aggravated the cough. I tried allopathic , homeopathy , naturopathy and everything else that came my way but it just didn't get any better. Naturally, my diet suffered as I could not have any form of milk, curd or whatsoever .
Even a simple sonography scared me as the minute I would lie down the infamous cough would return. The doctors were very wary of whether I would be able to carry till the last month. Thankfully, all sono's suggested that the baby was absolutely fine and fighting well. Here I would thank my lungs for carrying my baby and me through till 7 months. I was hospitalised after just entering my 8th month as my condition deteriorated.
Thoughts of whether it was a wise decision and whether I would be off-oxygen-support-ever did run through my mind. Those days were very daunting and I felt very selfish and concerned about my son. Hospitalisation didn't cure the cough but my oxygen and other important parameters were monitored well. The care I got there is something I will always carry in my heart.
1 March, 2016
That day I was uneasy since morning and the doctor said,
"Your baby is ready but we are concerned about you."
I was sent for a heart examination and all my doctors gathered to take a decision. I had to undergo emergency C-sec as my heart readings were all over the place and it was being negatively effected.
I had developed pulmonary hypertension.
1 March 2016, 19.10 pm
Surrounded by 5 brilliant doctors and their team...
My princess was born...
Everybody in the OT said
"A miracle is born".
Weighing just 1.75 kgs her doctor said "she is a fighter". I barely got to see her. She was smiling as she was taken into the NICU which would be her home for the next 23 days. As I was wheeled into the ICU, I took along with me the power and strength to fight which I had drawn from my newly born daughter. Just like her, I smiled at my parents too, who had stood by me like my backbone. They were so relieved. Finally.!!
All they wished for was to see thier daughter normal again.
What followed in the ICU were moments of pain, agony, frustration, desperation and some more pain. But, then came the tears of joy, love and fulfilment.
In the next few days, my husband became a zombie running between the ICU and NICU along with single-handedly taking care of my son and my parents and managing his office.
5th March 2016, 19.25 pm
I saw my angel properly for the first time ( Since I was in the ICU for 3 days and had a catheter, I was not allowed in the NICU ). Looking at her, was such a surreal moment, she was so tiny and had so many tubes attached to her. But when I saw an oxygen tube intubated in her, I could not bear it and I sank into my wheelchair. The nurses saw me and said, "No tears allowed...your daughter is a smiling diva." I was assured that the air tube was just for support so that she would not stress while breathing.
I was discharged after a few days. I came home alone without my bundle of joy but I had left my heart, mind and soul behind with my precious baby. I was still on oxygen but I would visit the hospital daily just to see her for 20/25 minutes. It was so painful to return home empty handed each day.
Time passed slowly but time also healed. I was finally off oxygen support a few days after I brought my little angel home on the auspicious day of Holi...
One could say, I had taken a risk or gamble with my life but it paid off beautifully. It also freed my family from the agony of seeing me go through all the pain and struggle. My husband's sister touched my heart when she said "Thank you for giving us this gift".
From being a delicate darling I had now become an incredible fighter!!
Each day, I silently thank the almighty, my parents, my husband and my doctor who saw me through my pain. Also, my son and all my wonderful friends who lived each and every moment of my journey along with me.
My daughter is almost 3 years old now, she is hale and hearty, beautiful and always smiling. By God's grace both of us are doing well .
I am happily living along with Systemic Sclerosis as it has now taken a backseat in my life .
My husband and son are absolutely head over heels in love with her. My dream has finally been realised. Yes, miracles do happen! She has inspired me to write and here are a few lines for her...
I fought for our chance,
You fought along too,
The day you were born,
I was born too.
You came into my life,
My heart skipped a beat,
You gave me hope and joy,
So now I'm complete.
When I held you in my arms,
I knew what was heaven,
You peeked from your eye,
And I saw my reflection.
As each day passes,
I love you more and more,
Your smile and your love,
So true and so pure.
Hiding my pain and burying my fear,
Smiling all along and fighting the tear,
The moment you cried,
I cried with you,
I had won the race and
My prize was you.