The Rocking Horse Project (RHP), a pediatric palliative care organization based in Eswatini is partnered with VITAS Healthcare of the Inland Empire in California. Sharing and understanding the work of each other is a key component of a successful partnership. The Rocking Horse Project recently shared some touching stories about children that passed away while in their care in 2020. At the beginning of each new year, the RHP staff reflects on the previous year’s work and the children who sadly passed on. “Each life is unique and each child holds their own special place in our hearts. Each child’s passing is felt. The ones we got to know better with time, one could say had more sparkle in them than the average person, despite being unwell. They were filled with such determination and vigour to get better and return home if they were admitted to the hospitals and loved to share their stories of what they would do once they were discharged.” Their lives were short, but each child left a lasting impact on staff and caregivers. Below are their stories:
Remembering each child by some special quality:
The curious outspoken one
This teenage boy was so ill we weren’t sure what to expect. However, he recovered well and went home, but some months later he was readmitted at the hospice we work with where he passed away after a few months. During his time at the hospice he always made sure he told us what he needed and that one day he would complete his education and become a doctor so he could help other sick children. He was never shy to ask us, in his very charming usage of long eloquent words in the letters or texts he sent us, to buy him a ball, shoes, or other items he had seen at the shops. He also had a wonderful sense of humor and when asked if the RHP laptop with which he was entrusted was working, he would answer by saying “its fine, not even one bruise.” The last months of his life were difficult, yet he never gave up fighting to get better. The bond between him and his mom, who had given up her job to be with him, grew so much as she cared for him and it was such a beautiful expression of dedication and love as one witnessed their relationship.
The determined caring one
A young lady who welcomed us with a smile when we met the first time and was always happy when we came to visit. We try our best to give our children a care pack when they are referred to us as outpatients or are admitted at Hope House Hospice for inpatient care. As this girl went through the items in her pack, her face beamed with thankfulness and joy. She commented on each carefully inspected item. She shared her dreams of going to study when the school year opened in September and was busy applying to universities. Her passing made us all very sad as we were hopeful she would recover well, like she had earlier in the year, and that she would have been able to do the things she so diligently planned for.
The studious and fun-loving boy
While admitted at the national referral hospital during the pandemic, this patient was asked what he would like to while away the hours. He wanted books and lots of them. A week or two would pass and he would call us to say that he had read the books we had given him and wanted more to read. He was a child who had a desire to read and learn despite being in hospital and unwell. He always thanked us for the items we sent and his kind, smiley face will be forever remembered.
The quiet beautiful warm girl
She never said much, but her presence was always felt because of her beautiful calm expression and smile. She was a down to earth girl with dreams of being a heart doctor one day to help children. Her parents were loving and very supportive; you could clearly see the adoration and respect she had for them. Walking this journey with all of them was humbling and taught us the importance of family, humility and kindness.
There are other children who we may not have known for a long time, but each of them will be treasured and remembered by RHP, for their beaming smiles, affection, gratitude, inquisitiveness and gentle natures, amongst other qualities. One thing which is truly humbling and admired is that alongside most of these children is a mother/father/grandparent/aunt/sister who is supportive and devoted. We are reminded that the work of palliative care doesn’t stop when a child passes on, but continues into the bereavement period, providing the necessary support that families need.
Let us treasure the special moments that cause one’s heart to swell with thankfulness and joy from being a part of these precious lives whether for a short or extended time.