“WHICH COLOUR DO YOU CHOOSE?”
xxx was a tiny figure, lying on a small bed, with his mother sitting beside him. Had I not known, I would have guessed he was 7, not 10. Acute Lymphoblastic Leukemia (ALL), a type of blood cancer, is notorious for impaired growth. The medicines controlled the pain but there was no masking the anxiety and sadness in his eyes. He just lay curled up listlessly. He did not have to speak for me to hear – “take me home; I want to play with my brothers and sisters.” While he had managed to tear the wrapping off a treasure bag he had been given, the stiff packaging of the colour box and drawing book were too challenging for his weak hands – so they just lay beside him.
I gently opened the drawing book. I began to draw a small butterfly, as he watched with curiosity. He slowly lifted a colour pencil and made his first mark on the paper. We did not exchange words, we traded colours. I pretended my fingers were bananas and clapped gleefully whenever he finished one part and took up another colour pencil. I saw the first shy smile. We played together for a while – I drew, he coloured. He gave me the broadest grin and waved when it was time for me to leave.
xxx died shortly after my visit. It was not unexpected, as every day of his brief life had been a battle. He had faced many obstacles - social, emotional and physical. However, for a few golden moments that day xxx was able to be just what he was – a child…..and enjoy his right – to play.
“WHO IS READY FOR A GAME?”
We were glad to support child-patients families with groceries and nutritious food. Families of many of our patients, being daily wage earners or from out-of-city/state, can no longer go out to work, and consequently cannot afford living expenses. Child-patients’ growing bodies need additional nutrients to cope with the medications, and absence of basic nutrition and hygiene also threatens the safely of the already-immunocompromised child. While we provided nutritional support in the form of groceries and hygiene kits to some impoverished child-patients and their families.
I am 15 years old. I used to love going to school and playing with my friends, but not any more…..because I am so heavy! I feel so ashamed! This is all because of those medicines I have to take for Acute Lymphoblastic Leukemia (ALL), a type of blood cancer. Thanks to this disease and its treatment, I lost all my confidence. I was sad!
One day. When I came to hospital for my routine check-up, Golden Butterflies was organizing some art and recreational activities. My mother asked me to attend the session, but initially I was not interested. I had lots of doubts. But attending the first session made me feel so happy…… after a long time! I was able to mingle with other children and I was encouraged to come forward and perform. I started attending their monthly sessions regularly. Through craft and art activities I was able to imagine and create new things.
Slowly I gained back my confidence and made new friends. Now I go to school and play with my friends happily.
Mother (care-giver) – “I am so happy to see my child smile and laugh again!! I am reassured when my child is in the GB Bandwagon session because she is able to be herself and communicate with other children, like she used to before the illness. It is also exciting to see her doing various activities which brings out her creativity and improves her confidence.”
We are just so happy to see the children come and have so much fun that they forget their pain for some time. The bonus is the smile on the parent’s face….which is much harder to come by, any day.
“John (Intern) Hindustan College of Arts & Science”
To start with my experience in Golden Butterfly, it is in fact an unexpected visit which turned into a completely different experience enriched with learning. When we went and enquired about it for the first time, the innovative projects such as GB here for U, GB band wagon, GB Brick by brick and GB cocoon caught our attention and pushed us to take a decision to do our internship there. Not only were there projects catchy but they had a clear vision and a motive for the same.
With huge excitement about the work we would be expected to do as well as a little nervous about the place, we walked in, but to our surprise, they made us feel one among them and oriented us to the environment. Our first day was subtle but as time went by as interns and as we interacted with child-patients and their caregivers it was full of emotions. GB, being a palliative care facility, groomed us personally as well as professionally in cancer rehabilitation by helping us learn about the different types of cancer and overview about the management, bedside counselling, counselling the burdened caregivers and the debilitating children.
My personal experience in GB extends well beyond a normal intern as they made me take critical decisions and gave leadership by mentoring the other interns. More than being empathetic I felt grateful with what I have as I painfully saw the young children enduring sufferings and I had many such events which eventually changed me into a better person. We learnt that this life is meant for living and making everyone happy as much as we could. We also learnt that we should be there for people not just listening to their problems we learnt to do something in action to help them overcome it. After being interns of GB we realized self-centric life is nothing and living for others creates ultimate happiness than anything in this world. God had everything planned for me! All my life I hid my sorrow under a smiling face but this place wiped it all away by giving me eternal happiness!
The professional learning I received is so vast starting from how to make powerful presentation and present it well, to teaching the management and organisational skills and the value of teamwork. The work culture was entirely different which made us feel at ease and they also conducted various sessions such as art therapy, three levels of perception and other such programs for us. One particular aspect I learned from GB is to modulate my emotions properly as they helped me to regulate the overwhelming emotions I went through as part of the process of palliative care among innocent young children.
To be honest, it was a privilege and an immense blessing to have worked in GB. Though we might have worked here as an intern now, we would always be the wings of Golden Butterfly, flying up high taking up the nectar of positivity to the world.