It happened five years ago. The day that started early with
joy, fun and excitement ended in the hospital with a new challenge that turned
our lives upside down.
We learnt a lot during these five years. Time management,
discipline, diet control, good food became a part of our routine. We were
surrounded by good people. Thanks to them, we are back to life with a bang.
From time to time, I have shared all the good things that
have happened to us. Today, let me share the challenges we faced.
It was tough to get going when on the same day three
doctors, in strong tone told me that Garima will never walk and will always
have to use a catheter. That was the first time I actually broke down and
cried. Every month or two, we had to see her having high fever and urine
infection as an effect of using a catheter, and still she tried hard to
continue her day long physiotherapy.
Even though we were warned about the chances of her having a
pressure sore, we couldn't prevent that demon from afflicting her. Garima
suffered from stage IV pressure sores on both of her buttocks for around two
and half years, during which she underwent three surgeries – the last of them a
major one, of six hours’ duration. Maintaining good health and a healthy body
was a big challenge. I was dressing the sore at least four times a day. The
doctors appreciated the way it was maintained and kept oozing. We tried so many
ways to heal it without surgery.
We consciously worked on keeping away the feeling of
dependence from Garima. Her first outing post injury made us realise that being
emotionally strong is way more important than the physical challenges.
People stare at this very pretty young girl on wheelchair
and some come to ask why she is on a wheelchair. They are generous to advise us
about how she can walk again. They try to help without asking when we shift her
and it resulted in Garima falling from the wheelchair and me getting angry with
that person.
We stayed away from negative talks. I became blunt enough to
kick such people out of my home. Those pitiful eyes and words have no place in
our world.
While bringing Garima down from the hill where she was
injured, we realised the importance of physical health. Our physical health was
enough for the life style we had at that time. However, Garima's care and rehab
demanded a lot more than that. I exercised along with Garima's routine to
strengthen myself. Today when I lift her from floor, I don't have any pain in
my back. I remember when I lifted her first time from the floor, I thought my
back will break into pieces. Gaining this fitness with a busy routine was a
challenge. As Garima has mentioned in one of her posts, spinal cord injury
needs high maintenance.
Garima is a person with many hobbies. I have to ensure that
she finds time for everything she wants to do. We do that by scheduling our
day, prioritising our activities and fitting them in the free time available. This
helps us not get bored easily.
There were incidents like burns, ant bite scratches on
Garima’s legs, many unavoidable, many due to very minor negligence. We even
fell while shifting from bathroom, from chair, from exercise ball. Some gave
injury, some resulted in laughter. All these incidences taught us about more
areas to be careful about in our daily life.
We follow a very regular routine. We do the same activities
at the same time in the same sequence. When needed, we break this routine for a
short while and again get back to that routine.
I accompany Garima everywhere. Hence I have to ensure that
my presence is not felt and doesn’t disturb others. I have to ensure that she
enjoys her time with her friends as every person of her age does. I learnt to
be part of her generation, listen to the music she likes, listen to her when
she shares her excitement while reading a book, not react and only listen when
she throws her anger for a bad writing, unacceptable behaviours and everything else
she has an opinion about. Even if I am aware of the consequences, I have to let
her take her own decisions and learn out of her experiences. I however share
the pros and cons of her decision. When she thanks us for the way we have
brought her up, we feel that we have passed the exam of parenting with flying
colours!
I was well settled in my career. Now I am with Garima in
pursuing her goals and to manage her rehab. Being with her and witnessing her
grow in all walks of life is so satisfying that I hardly miss being very active
like before in my profession. I was managing many things for my family and
Dhananjay’s business. Now he has to look after many more things than he used to
do earlier, as I am more occupied with Garima’s rehab.
Five years ago, work from home was not a very acceptable option
in my profession. Lock down brought everyone on the same page. At least it got
acceptance. May be many professionals in need to work from home will not have
to give up now.
The biggest challenge of going out is lack of suitable infrastructure
for physically challenged. We don’t see many wheelchair users in public. It isn’t
because there aren’t such users. It’s because they can’t go out comfortably due
to the inconvenient infrastructure. This is a big attack on their feeling of
independence. I wish the people creating infrastructure become more sensitive
towards this issue and follow the law. And we, as society, look beyond their
wheelchair and behave with them as normal human beings, who are not sick, but have
a condition and need our empathy, and not our sympathy at all times.
These challenges have increased our bonding as a family. In spite
of all the challenges we are facing, we have been able to keep our head high
and are striving hard to make our life most meaningful.
Gratitude towards everyone for being with us in this journey
of Garima’s brave recovery.
