23 FebAlong with all the sunshine….
Butterfly Home is a happy place, where our kids get to laugh and live and enjoy their childhoods. Amongst the medical necessities, we focus on simple pleasures – fun-filled days, peaceful nights, loving relationships. Our children deserve to experience those things, whether their life expectancy is long or short.
But of course, the reality of palliative care is also part of our lives. The guidelines for referral to Butterfly Home include a shortened life expectancy – so we accept that many of our precious ones will not have long lives. Our staff and children must face grief and loss, and we mourn these beautiful lives which are heartbreakingly brief. Today we want to introduce two of our sweet little ones who have passed.
This is Bernadette, a two year old who came to us in the middle of last year. Bernadette had severe cerebral palsy and it was terribly difficult to feed her. She was malnourished and suffered seizures, with her face frozen into a blank, terrified expression. We quickly started her on nasogastric feeding and began to show her that she was loved. In just a few weeks, her cheeks filled out, and her eyes lost their fearful look. With her pain and seizures under control, she seemed like a different child.
Bernadette always needed intensive, focused care due to her physical limitations and medical challenges, but she experienced fun, peace and love. Her life was short, but this little girl mattered and was loved. We had the privilege of knowing and loving her for almost six months – she died in November, and is missed every day.
This sweet angel is Shanell. We don’t have many photographs of her, because we only knew her for about 12 hours. These stories are perhaps the saddest for us – the children we never really get to know. Shanell was incredibly sick. She was born without an anus or a true oesophagus, with bladder and bowel defects, a severe heart condition, a liver disorder and blood abnormalities. In hospital, every vein in her tiny body was poked, and she lay connected to IVs and machines while decisions were made about her future. Finally, she came to us – traumatised, cold and weak, but still breathing softly.
Under Nurse Katie and Dr Caroline’s supervision, our nurses gave Shanell what she needed for twelve precious hours. She was loved, cuddled and comforted, and her pain was relieved. She sucked tiny amounts of milk from a sponge, and became warm again. Her body could not sustain life for long, but she responded to the love and nurturing. It was devastating to lose her so soon – we’d only just begun to reach her frightened little heart. But we know that half-day made a difference to her experience here on earth.
Tiny Shanell passed in loving arms. Her last experience of life was tenderness and music. We miss her too, even though she was only here a moment. Sometimes we wonder who she might have grown to be, but then … we remember who she was. A unique, precious, perfect little person. Not everyone gets to grow up. But everyone still matters.