After looking at all the pictures on my camera, I must say that the picture I chose comes closest to capturing the purpose of our journey; to educate, to share knowledge, to empower.
During our home visits of families with a child on hospice care, I met a very special family of four; Mom, Dad, Victoria, who is 6 years old, and her younger brother. Victoria is dying of cancer. She lies on the couch, where her family and nurses tend to her every need. Her body and face are swollen from steroids. She can no longer see. She asks for help for her pain repeatedly. She communicates in 2-3 word phrases, answering direct questions with “da” or “no”. Her favorite color is pink. She loves to eat thin slices of pear.
After our home visits, Audra and I presented educational material to the hospice staff titled “Leaving a Legacy”. By providing families with legacy building activities, professionals and caregivers join with families to validate the significance of their child’s life and the impact they have had on their family, their community and the world. We guided one of the staff members through the process of making a 3-Dimensional Hand Mold – a legacy building activity frequently used by Child Life Specialists at Cook Children’s.
When the hand mold was complete, the nurse, social worker and volunteer who work with the family I met earlier, asked if I would return to their home and do the activity with Victoria. We had enough material left for one attempt, with no mistakes.
I used this opportunity to model for Ester and Lydia how to describe each step and the sensory experiences Victoria would encounter before it occurred and then asked Victoria for permission before proceeding – the support Lydia would provide by letting Victoria lean against her chest so she would be comfortable while we worked, the minty smell of the impression material, the sound the spoon would make as Ester quickly mixed the material, and the feel of her hand resting in the cool, sticky pink “mud”. Her brother sat close by, overseeing every step.
After Esther poured the casting material, we had to return to the University to meet up with the group for dinner. While in the stairwell of the apartment building, Esther threw her arms around me and buried her head in my neck, saying, “I can do this! I can do this! I know that I can do this!”
By sharing our knowledge, and empowering others, I witnessed their belief that they can meet the needs of their community and lead their country to improve the quality of care for all the children of Romania.
~ Jada Wilson