Rahul married Rucha in an arranged marriage...
They had a wonderful married life for 5 years till their daughter Aaradhya was born...
All went well till the baby turned one...
A day after Aaradhya's first birthday Rucha collapsed....
On rushing to hospital, she was diagnosed with a third stage pancreatic cancer...
From then onwards there started a struggle, of providing the best they could, to Rucha in what the doctor's stated as her last few months...
Trips to the hospital and back continued with baby Aaradhya waiting back home for her mamma's arms...
Her grand parents took turns to take care of her and be with Rucha in the hospital since it was important for Rahul to rest between erratic work hours and hospital....
Rucha was never afraid of death, all she worried about was how Rahul and her baby would cope after her....
Rahul had to show strength in front of her to convince her that they'll be brave and face everything....
At times both Rucha and Rahul would spend nights crying about the inevitable....
They always felt that an unknown devil is way better....
One wonderful thing in this journey was that everyone, right from Rucha ,Rahul, their parents and extended family were never in denial about the disease...
No one ever comforted each other with false hope...
If anyone would break down, others would let them cry, be, and vent out...
Cancer was not only accepted but embraced by them....
However painful the journey was, everybody faced it bravely and bid farewell to Rucha with a smile of relief...
True, it was a relief from a lot of pain and suffering to Rucha as they finally let her go....
Rahul, by then became a single parent of a three year old Aaradhya...
In the hectic schedule of taking care of Rucha's ailment there had been a bit of neglect in observing Aaradhya's growth...
He observed that she wasn't walking independently yet and took support for locomotion...
Whenever left without support she would end up falling down...
Now the whole family's life revolved around little Aaradhya...
They took her to a pediatric multi speciality hospital...
They put her through all the relevant tests...
And they were given the diagnosis that Aaradhya had Duchenne Muscular Dystrophy (DMD)
Hell broke loose when they were casually told about the disease with no official explanation of what it actually was...
Rahul was already feeling the pressures of being a young, single parent when he came to know about Aaradhya's condition....
It was a rollercoaster of emotions when he heard the physician say in the most arid clinical tone ever that his daughter, his only hope for leading a normal life, Aaradhya had DMD.
Rahul with a lump in his throat and eyes full of tears said, "thank you doctor."
He immediately rushed to a medical library at the other end of the city to read up all he could....
He read-
Duchenne muscular dystrophy (DMD) is a genetic disorder characterized by progressive muscle degeneration and weakness.
It is one of nine types of muscular dystrophy....
All he kept thinking was, "Holy cow....when? Why? How? How come us? Why only us? "
He read further -
DMD is caused by an absence of dystrophin, a protein that helps keep muscle cells intact.
Symptom onset is in early childhood, usually between ages 3 and 5.
The disease primarily affects boys, but in rare cases it can affect girls....
And that rarest rare case had to be Aaradhya, he thought....
He could feel his strength being pulled out from him...
Further more he kept reading -
Muscle weakness can begin as early as age 3, first affecting the muscles of the hips, pelvic area, thighs and shoulders, and later the skeletal (voluntary) muscles in the arms, legs and trunk.
By the early teens, the heart and respiratory muscles also are affected.
As his eyes went through the print which read all of the above, the ground beneath his feet slipped past as he frantically collected compiled correlated grasped and understood what all he read that day and many days from then....
Lack of the dystrophin protein in muscle cells causes them to be fragile and easily damaged.
DMD has an X-linked recessive inheritance pattern and is passed on by the mother, who is referred to as a carrier...
In this case there was no one to be tested since Rucha had already passed away....
He tried putting pieces together, not because he was cognitively challenged , only because he could barely accept the reality...
The flat plain dry emotionless library seemed no less than death room choking him with the twist in life...
It took him a lot of time, literally, to fully understand what Aaradhya and he were up against...
He failed to understand as to why his stand changed in his daughter's case unlike his wife's...
There were so many negative emotions that rose up and surfaced as he struggled with experiencing them in totality....
It was absolutely not easy as he gave in to feelings of despair sooner and couldn't fully come out of denial...
Life would never be the same and normalcy would now be such a relative norm...
To come out as a complete individual again was next to impossible...
Yes there was sadness, yeah there were frustrations, but whom would he tell them?
Whom would he share?
They were a father and a daughter, friends and partners in this.....
Detailed reports came...
In Aaradhya's case her second X chromosome had sustained serious damage because of a gene mutation which made her secrete miniscule amount of dystrophin not enough for her muscles to develop or repair...
From then on a journey started,
Physiotherapy Occupational therapy Water therapy, splints.
Every time Rahul saw his little one flash a smile or conquer a task, he knew that the fight was worth fighting.....
Even with the challenges, Aaradhya developed into a delightful enthusiastic bubbly young girl well aware of others acceptance towards her and her own acceptance towards other people's physical freedom....
She learnt to assertively state when she wanted to do or try something on her own and when she would like others to help...
She was vocal about her needs and feelings...
And that was the best part...
She wasn't afraid or shrieking aloud in laughter if she was really having fun or wailing out crying expressing grief over things that she failed in...
Yet she learnt and learnt over time that there were going to be some things she wouldn't be able to do...
Patience developed even though very slowly , it did built up in Rahul, Aaradhya as well as their family...
In school if her friends were rude or in her therapy sessions , the therapist a bit harsh, Aaradhya would express it loud and clear that their behavior was way out of line for her needs....
She loved stories, listening to them and narrating them in the most animatedly excited way possible....
She loved animals and babies and dolls and kitchen sets and dress up and role play....
She was a kid, as child like as she could be....
Her challenge was more of an emotional one than physical as seen by others...
But she developed virtues of leadership, delegation, non - judgement, acceptance and clarity of what was a Yes and what definitely was a No.
Unless affected by any disease or a debility or a challenge, we can never come close to fully understanding what they must have gone through.
Rahul walked in parks and malls and on the roads with Aaradhya in her wheelchair....
He made sure life was as real to her as it could get.
He hated to get her into a car unless she asked for a drive or for long distance visits....
If people stared he went up to them and made sure he answered the question mark on their faces in the gentlest way he could....
Rahul felt that there was a horrific lack of public knowledge with regards to Muscular Dystrophy and if it was ever given a voice like Polio or Diabetes or cancer for that matter, the world would be a better place.
The drives or marathons for MD were not enough....
Rahul went out, talked to people he met and to their friends, strangers or anybody willing to give five minutes to know what's wrong with his girl since people had no clue as to what Muscular Dystrophy was and what it meant....
For Rahul, he was lucky that both sets of Aaradhya's grandparents joined hands with him in raising funds for her treatment....
He had strong support, financially as well as emotionally...
Aaradhya passed away right after her 14 th birthday....
Rahul lost a part of his soul...
He had earlier lost a partner...
Now his heart had a void....rather the Void had a tiny bit of a heart left beating...
Certain death was a curse that he had known for the most important people in his life...
He could never ever settle again...
Because he never really knew what settling down was....
He understood that now there was a purpose to his life....
Rahul didn't just want to preach and reach but He wanted to go beyond and actually do something....
He knew both his wife and his daughter were here to teach him lessons, to help him grow....
He is dedicating his life to serve kids with Muscular Dystrophy with all kind of help, awareness, counselling, knowledge, resources, treatment, psychological support, medical networking finances and funding.....
All said and done, Diagnosis Disease Deterioration and Death is a journey with no end, but a beginning...
Well, at least in this tale for sure....
They had a wonderful married life for 5 years till their daughter Aaradhya was born...
All went well till the baby turned one...
A day after Aaradhya's first birthday Rucha collapsed....
On rushing to hospital, she was diagnosed with a third stage pancreatic cancer...
From then onwards there started a struggle, of providing the best they could, to Rucha in what the doctor's stated as her last few months...
Trips to the hospital and back continued with baby Aaradhya waiting back home for her mamma's arms...
Her grand parents took turns to take care of her and be with Rucha in the hospital since it was important for Rahul to rest between erratic work hours and hospital....
Rucha was never afraid of death, all she worried about was how Rahul and her baby would cope after her....
Rahul had to show strength in front of her to convince her that they'll be brave and face everything....
At times both Rucha and Rahul would spend nights crying about the inevitable....
They always felt that an unknown devil is way better....
One wonderful thing in this journey was that everyone, right from Rucha ,Rahul, their parents and extended family were never in denial about the disease...
No one ever comforted each other with false hope...
If anyone would break down, others would let them cry, be, and vent out...
Cancer was not only accepted but embraced by them....
However painful the journey was, everybody faced it bravely and bid farewell to Rucha with a smile of relief...
True, it was a relief from a lot of pain and suffering to Rucha as they finally let her go....
Rahul, by then became a single parent of a three year old Aaradhya...
In the hectic schedule of taking care of Rucha's ailment there had been a bit of neglect in observing Aaradhya's growth...
He observed that she wasn't walking independently yet and took support for locomotion...
Whenever left without support she would end up falling down...
Now the whole family's life revolved around little Aaradhya...
They took her to a pediatric multi speciality hospital...
They put her through all the relevant tests...
And they were given the diagnosis that Aaradhya had Duchenne Muscular Dystrophy (DMD)
Hell broke loose when they were casually told about the disease with no official explanation of what it actually was...
Rahul was already feeling the pressures of being a young, single parent when he came to know about Aaradhya's condition....
It was a rollercoaster of emotions when he heard the physician say in the most arid clinical tone ever that his daughter, his only hope for leading a normal life, Aaradhya had DMD.
Rahul with a lump in his throat and eyes full of tears said, "thank you doctor."
He immediately rushed to a medical library at the other end of the city to read up all he could....
He read-
Duchenne muscular dystrophy (DMD) is a genetic disorder characterized by progressive muscle degeneration and weakness.
It is one of nine types of muscular dystrophy....
All he kept thinking was, "Holy cow....when? Why? How? How come us? Why only us? "
He read further -
DMD is caused by an absence of dystrophin, a protein that helps keep muscle cells intact.
Symptom onset is in early childhood, usually between ages 3 and 5.
The disease primarily affects boys, but in rare cases it can affect girls....
And that rarest rare case had to be Aaradhya, he thought....
He could feel his strength being pulled out from him...
Further more he kept reading -
Muscle weakness can begin as early as age 3, first affecting the muscles of the hips, pelvic area, thighs and shoulders, and later the skeletal (voluntary) muscles in the arms, legs and trunk.
By the early teens, the heart and respiratory muscles also are affected.
As his eyes went through the print which read all of the above, the ground beneath his feet slipped past as he frantically collected compiled correlated grasped and understood what all he read that day and many days from then....
Lack of the dystrophin protein in muscle cells causes them to be fragile and easily damaged.
DMD has an X-linked recessive inheritance pattern and is passed on by the mother, who is referred to as a carrier...
In this case there was no one to be tested since Rucha had already passed away....
He tried putting pieces together, not because he was cognitively challenged , only because he could barely accept the reality...
The flat plain dry emotionless library seemed no less than death room choking him with the twist in life...
It took him a lot of time, literally, to fully understand what Aaradhya and he were up against...
He failed to understand as to why his stand changed in his daughter's case unlike his wife's...
There were so many negative emotions that rose up and surfaced as he struggled with experiencing them in totality....
It was absolutely not easy as he gave in to feelings of despair sooner and couldn't fully come out of denial...
Life would never be the same and normalcy would now be such a relative norm...
To come out as a complete individual again was next to impossible...
Yes there was sadness, yeah there were frustrations, but whom would he tell them?
Whom would he share?
They were a father and a daughter, friends and partners in this.....
Detailed reports came...
In Aaradhya's case her second X chromosome had sustained serious damage because of a gene mutation which made her secrete miniscule amount of dystrophin not enough for her muscles to develop or repair...
From then on a journey started,
Physiotherapy Occupational therapy Water therapy, splints.
Every time Rahul saw his little one flash a smile or conquer a task, he knew that the fight was worth fighting.....
Even with the challenges, Aaradhya developed into a delightful enthusiastic bubbly young girl well aware of others acceptance towards her and her own acceptance towards other people's physical freedom....
She learnt to assertively state when she wanted to do or try something on her own and when she would like others to help...
She was vocal about her needs and feelings...
And that was the best part...
She wasn't afraid or shrieking aloud in laughter if she was really having fun or wailing out crying expressing grief over things that she failed in...
Yet she learnt and learnt over time that there were going to be some things she wouldn't be able to do...
Patience developed even though very slowly , it did built up in Rahul, Aaradhya as well as their family...
In school if her friends were rude or in her therapy sessions , the therapist a bit harsh, Aaradhya would express it loud and clear that their behavior was way out of line for her needs....
She loved stories, listening to them and narrating them in the most animatedly excited way possible....
She loved animals and babies and dolls and kitchen sets and dress up and role play....
She was a kid, as child like as she could be....
Her challenge was more of an emotional one than physical as seen by others...
But she developed virtues of leadership, delegation, non - judgement, acceptance and clarity of what was a Yes and what definitely was a No.
Unless affected by any disease or a debility or a challenge, we can never come close to fully understanding what they must have gone through.
Rahul walked in parks and malls and on the roads with Aaradhya in her wheelchair....
He made sure life was as real to her as it could get.
He hated to get her into a car unless she asked for a drive or for long distance visits....
If people stared he went up to them and made sure he answered the question mark on their faces in the gentlest way he could....
Rahul felt that there was a horrific lack of public knowledge with regards to Muscular Dystrophy and if it was ever given a voice like Polio or Diabetes or cancer for that matter, the world would be a better place.
The drives or marathons for MD were not enough....
Rahul went out, talked to people he met and to their friends, strangers or anybody willing to give five minutes to know what's wrong with his girl since people had no clue as to what Muscular Dystrophy was and what it meant....
For Rahul, he was lucky that both sets of Aaradhya's grandparents joined hands with him in raising funds for her treatment....
He had strong support, financially as well as emotionally...
Aaradhya passed away right after her 14 th birthday....
Rahul lost a part of his soul...
He had earlier lost a partner...
Now his heart had a void....rather the Void had a tiny bit of a heart left beating...
Certain death was a curse that he had known for the most important people in his life...
He could never ever settle again...
Because he never really knew what settling down was....
He understood that now there was a purpose to his life....
Rahul didn't just want to preach and reach but He wanted to go beyond and actually do something....
He knew both his wife and his daughter were here to teach him lessons, to help him grow....
He is dedicating his life to serve kids with Muscular Dystrophy with all kind of help, awareness, counselling, knowledge, resources, treatment, psychological support, medical networking finances and funding.....
All said and done, Diagnosis Disease Deterioration and Death is a journey with no end, but a beginning...
Well, at least in this tale for sure....
- Prajakta Sathe
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