Palliative Care, Touching the Lives of Many

IMG_1777 - Neng telling Jes what a good girl she's been!

Jessi

Jessi is 5, and living with HIV. Her father left a long time ago. Her mother is living with her new family now on the other side of town, and Jessi sees her only once a year, on Eid-al-Fitr, a Muslim celebration at the end of the Ramadhan. But Jessi has a loving grandmother, who is her entire universe.

On our first few encounters, Jessi seemed to be a quiet girl. But as we got to know each other better, I began to spot the light of hope in her eyes. Jessi may not be in the best of health, yet her cheerfulness would shine through when she clapped her hands to her favourite song that I would sing at her insistent request.

HIV often causes developmental challenges, and this was clearly exhibited in Jessi. When I started taking care of her almost two years ago now, Jessi could barely speak. However, she would listen intently to the discussions around her, and would flail her hands excitedly trying to chime in.

& Her Grandmother

Being a palliative care nurse, my duty is not only to care for Jessi, but also for her grandmother. A woman in her 50s, grandma Surti has been Jessi’s tireless caregiver through all the many ups and downs of Jessi’s health condition. With the stigma surrounding HIV, many families of HIV patients are afraid to disclose their status. Grandma Surti is of no exception. She became isolated from her neighbours; alone and bereft of any support, she had no one with whom she could share her burdens.

We quickly became friends. Often during my home visits to Jessi, grandma Surti would share her fears and worries about Jessi’s condition. Is Jessi going to die? What does it mean when the doctor says this or that? Why are there so many medications and what are they for? Why can’t she talk and walk yet like other children her age? I would sit with her and make sure she had all her questions answered, her worries quelled.

With each visit, I can see Jessi’s health and cognitive condition steadily improve. Through our support and education, grandma Surti is able to understand better about Jessi’s illness, and how to administer her medications in a proper and timely manner. The wounds and pains that had previously ailed Jessi have begun to heal. She is now able to utter simple words and continue to add new words to her repertoire weekly. And, one of the most celebrated milestones of the past 2 years would be to see her learn to walk!

& The Palliative Care Nurse

I am delighted to see the happiness that is now painted on Jessi’s and grandma Surti’s faces. But more than that, I am truly honoured and humbled to have been given the opportunity to learn so much from them. Jessi has taught me to keep my spirit up even when things seem endlessly bleak. Grandma Surti, who has never once complained or become angry with Jessi, has taught me patience and compassion. She reminds me constantly to be a better parent for my son – to spend and cherish the time I have with him as much as I can, as much as grandma Surti does with Jessi.

& The Palliative Care Volunteer

My name is Tiarvafilin. I am a volunteer at Rachel House. I have been making birthday cakes for the children at Rachel House for over a year now. I am moved by how the nurses at Rachel House help the children live their lives to the fullest even when they are facing unbearable challenges. I wanted to play my part by making sure that these children too can have the happiest birthday celebrations they deserve.

One of the first cakes I made was for Jessi. At the time I had yet to meet Jessi, but the nurses’ stories about her left a deep impression in my heart. I made a promise that the cakes I would make for Jessi and the children at Rachel House must be not only delicious, but also pretty; for it may be their last birthday cake.

Truthfully, I am not a professional baker. Baking cute delicious cakes is simply a hobby I love and I consider myself a beginner. For Jessi, I was planning to make a strawberry cake. It failed. I cried. I imagined Jessi would be very sad eating a cake so terrible. But I did not give up and baked another one. With the grace of God, it turned out beautifully.

Jessi loved it. She could not speak, but her delight was apparent in her eyes. That may have been Jessi’s birthday, but it may as well be mine as it was one of the happiest days in my life.

Miracles do not fall from heaven; they are handcrafted by people. God created miracles through our hands. I do not know if I have made a miracle in Jessi’s life but I am certain I did give her a beautiful birthday. And that alone is a miracle in my life.

I am thankful to be part of the Rachel House’s team, to have the privilege to make a difference in the children’s life, adding joy and dignity to their remaining days.

Grandma Surti doting on Jessi with love & patience

Grandma Surti doting on Jessi with love & patience

 

Jessi and her beautiful birthday cupcakes

Jessi and her beautiful birthday cupcakes