A Special Journey – Henna’s story
Henna was diagnosed with severe special needs soon after birth. She lost her sight a few months later and her brain stopped developing. Tragically, she was later also diagnosed with cancer and was referred to St Luke's Hospice.
On arrival at the Hospice, Henna was frightened. She was anxious as her sensory world was in a totally unfamiliar environment. Henna felt very stressed and the care team felt she could benefit from complementary therapy. Initially, she hit out and pinched therapists Alan and Dierdre during the sessions.
Henna’s mum and dad, Jaya and Dinesh, talk about their experience:
“With Henna things were very difficult because she was visually impaired and had severe learning disabilities. She couldn’t understand us and she couldn’t speak to express herself. When Henna was diagnosed with cancer, it was very difficult for us as a family.
Henna never liked change. When we first started coming to St Luke’s, Henna could not recognise where we brought her; the strange voices, unfamiliar environment, and different people interactions made her anxious.”
Eventually, as Henna became familiar with the sounds, smells, and feel of the hospice, she began to feel comfortable with the voices of her complementary therapists – Alan and Deirdre. They tried out bespoke therapies to see how Henna responded to sound, touch and vibration as she was very sensitive and had unique needs. Henna’s parents sat with her to offer support and comfort. It took about 5 or 6 sessions for Henna to get used the environment and people.
The therapy team had no idea at the time, of the incredible journey they were about to undertake to support Henna and her family.
Dinesh, her dad says, “The support and care from St Luke’s was very good. It gave us the energy to take Henna all the way. The therapies at the hospice were special, boosting her energy and making her smile.
The sound and music therapy was wonderful. Henna loved the musical sessions. After a while we didn’t need to tell the staff what Henna wanted. During those sessions, Henna wasn’t dying, she was living.”
Alan used a variety of musical instruments, one of these being a glass “rainmaker”. He held it against Henna’s cheek so that she could feel the tingling. It was a sensory experience; the sound, the touch. Her parents played a lovingly active part in the sessions, encouraging Henna to feel the instruments, listen to the sounds.
“It was magical to watch. We captured the sessions on video and showed it to family from different parts of the world. When family members came to visit Henna, they took part in the sessions too and they were all very impressed”
, said Dinesh.
Complementary therapist Deirdre, used to give Henna hand and arm relaxation massages. She also liked shoulder massages. Again, it took about 5 or 6 sessions before she got used to the therapy. Soon, however, Henna got used to the light relaxation massage therapy and began to feel comfortable. Now, Deirdre could just ask Henna for her hand and she would willingly reach out.
Sometimes Alan sang songs or recited nursery rhymes adding Henna’s name in the lyrics or rhymes. This had a calming effect on Henna as she recognised her own name in her favourite songs.
Her mum says, “You could see her smiling and you knew she felt loved”.
The therapists worked together with Henna’s parents and family where everyone participated, whether it was conducting bhajan (devotional chanting) sessions, playing various musical instruments or guided mindfulness meditations with Tibetan bowls. During such sessions, Henna sat quietly, at peace with herself and the world.
The therapies continued for six months, eventually Henna became weak and found it too difficult to attend. She had stopped drinking and eating. She passed away in peace a couple of weeks later.
Henna’s parents reminisce, “When we first came to St Luke’s and we were taken around the hospice, we became emotional. We really didn’t want Henna to just lie in a bed and be cared for. We wanted Henna to spend her last days at home, with family, because we knew she needed her comfort zone, her own bed. She knew the people close to her so we prayed that Henna didn’t have to spend her last days in an unfamiliar environment. St Luke’s and the nurses made sure that Henna was at home and that she was comfortable and not in pain. We had the hospice at home.”
“We would like to say thank you to St Luke’s for giving Henna the sound therapy. Music was Henna’s world, and you made it possible for her to enjoy the moments until her last days.”
This was a journey for all of us – not only for Henna but also for her parents and for the therapists at St Luke’s. It was a special journey. It was a journey of love.