Meet Sanjana Shah, a Mumbai based mum who shares with Mums and Stories, a lot changing in her life with the onset of motherhood. More importantly what needs to be noticed and admired is her love for life with a child who is home bound due to a condition that has delayed all his developmental milestones. This is a story of grit and immense faith and patience.
We do hope Sanjana and her baby prove the world that it can be possible to live with dignity and energy despite a delay, a few moments paused but it hasn’t stopped them living life.
Sanjana begins her story by sharing how her pregnancy was just perfect with her taking care of her health, stress and even inculcating travelling to make it to a happy pregnancy phase. Soon after nine months of the would-be-mom status, life stood at her giving her the status of being a mom. Sanjana as most urban educated women would be was aware of importance of breast feeding and other dilemmas that creep into motherhood. Ready to handle the situation she began with her attempts to breast feed her baby. But something was wrong and she hadn’t seen the signal, or read it right.
Once home, the new mum and baby were fine according to others, but Sanjana says it slowly started taking a toll as her little one was just not able to feed himself much, neither with bottles or breastfed.
“We the proud parents chose to name him “Shourya”.
It is incidental that his name means being brave and he has to be brave to withstand a lot in life.
Initial days of motherhood seemed endless. My baby had severe reflux which led to constant puking, more often through the nose, leaving him choked. I was concerned if he was getting enough nutrition. I had visited the pediatrician several times with my concerns only to be re assured “I was being named as an anxious mom”.
Sanjana further shares, “Shaurya, would cry incessantly for hours, often leaving himself and all of us exhausted and helpless. There had been days and nights where he would cry non-stop. After reading enough material on babies getting colicky in the initial months, due to which they cry excessively- I kept gathering patience hoping this phase was temporary, and will soon pass. But it didn’t change much.
I have always been a very ambitious career oriented individual. Like several other mums who love to work outside home too, I too planned to continue work. Unfortunately I couldn’t, as my son required more attention. Things got complicated with his diagnosis which did leave me shaken for a long time.
Meanwhile there were several episodes of my futile attempts of trying to feed my child and my fears of having him dehydrated. My fears indeed came true when he was admitted to hospital for treatment due to dehydration. This was when he was two months old. I had several questions in my mind. Finally there were a huge number of blood tests followed trying to find diagnosis. Initially, the peadiatrician suspected it to be an infection, but that was proven wrong. Ultimately, my pediatrician did arrive at the diagnosis after a prolonged waiting period. In one way I was gad he did arrive at it, so that the treatment can be started as soon as possible.
We were told that Shourya has ‘microcephaly’. I had to ask the doctor to repeat the word thrice before I could even pronounce it right. We as parents hadn’t even heard this word, forget knowing the meaning. The doctor explained to us that microcephaly is a neurological condition wherein the head circumference does not grow, or grows at an extremely slow pace compared to other kids.
Obviously I was not ready to accept it. All I knew was the height and weight was the most important criteria to be checked in a baby. I had no idea of what the head circumference was when it came to right parameters of good health. The next thing I did was browse several medical websites. Then came the blow of knowing that due to this disorder, my child’s –all his body systems would be affected.
Perhaps ending one set of problems, it was the beginning of new problems.
Naturally, I experienced a gush of emotions in my heart. I had guilt being the strongest emotion with self-pity to frustration, anger, why me? I did blame myself, my pregnancy, my doctors – I even blamed the Mumbai roads for the potholes and maybe the potholes and the bumpy rides I had taken in pregnancy had caused all this complications.
Life did appear to be scary, dark and uncertain.
(Sanjana Shah with her child).
Today I am much more calm and now I feel I have got the answer to why me?
Whenever asked, I have been given the answer- ‘Why not you?’ God gives only what you can handle. I realized my husband and I were the best parents for our child Shourya. We had with God’s grace the time, money, strength and courage to handle him and take care of him. I did cry for days and nights. It was tough –I cried so much until I was broken and had to pick myself again.
Shourya became my priority. Today he is five years old and I am in much more calmer position to talk and share of the dilemmas we have faced and are continuously facing. My child is a very happy-go lucky person, always happy and full of enthusiasm. He needs help and he is delayed on speech and every other milestone. He does not go to school but I am hopeful that we will make him capable enough for this society. When we are outdoors, people do stare. Few come up and even ask me about him. Initially it was awkward but now have learnt to be calm and handle the stares or the questions. We as a family do travel a lot as we all love it.”
After a pause, Sanjana adds, “ We do deserve Shourya. I remember those days of running to doctors, neurologists, neurosurgeons, physiotherapists, getting pranic healing done, Reiki, Ayurveda, astrologers, priests and everything one can name for the health of my child. The state of mind Niraj –my husband and I were in – We went beyond rational thinking.
It took months for us to accept his condition. We started his physiotherapy immediately after he got discharged from the hospital when he was two months old. He used to cry throughout the therapy, following which I would cry at home once we were home. I would think of not making him go through the ordeal and try and do everything myself. But again the next morning, I would get up with all the courage and convince myself that it’s for his betterment.
I really want to share with other parents who if at all have children going through difficult phases in life to be strong. I do understand you can be drained out emotionally, physically and at times financially too.
My object is to give them one level of motivation that they are not alone in this journey.
There are days when it gets overwhelming and days when am more hopeful.. That’s how life is -the sooner we accept , the happier we will be.”
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We at Mums and Stories would like to thank Sanjana for taking time and sharing this inspiring story with us.