We struggled with the purpose of Sasha's life. She lived for 744 days. She laughed with us and smiled and loved and showed great joy yet she also cried whenever she awoke until she had her bottle in her mouth. The hospital took every effort to control the pain of all their interventions. Outside the hospital, we think she experienced great discomfort from the itching caused by her Alagille Syndrome and we expect she suffered some discomfort as damaged liver continued to swell and develop suspected portal hypertension. After the second surgery complications she suffered morphine withdrawal, developed a jejunal fistula and went without any food for over two months. Fed by a permanent IV during her last 6 months of life, she scratched at where the tubes entered and were sutured to her flesh. She experienced so many pokes and pricks. She could never tell us her pain nor could we explain it to her. Despite everything she experienced she never feared needles or cap changes or nurses or doctors or the hospital doors. This blog is testament to her determination and spirit.
Within the Buddist tradition, the soul accrues karma by suffering and devotes believe Sasha chose us because we could give her the love and care she needed. Within the humanist tradition she was defined by a missing gene and her life spurs us to knowledge and shows the potential compassion of our society. Within the Jewish tradition from Kabbalah she could be a Gilgul or reincarnated soul who returns to earth for a short time to fulfill a purpose. Within some indigenous traditions she is now in the spirit world and needs to be fed with remembrance and good deeds that bring her honour. As a humanist, born into a Jewish family, the best way I can approach why she was here and how I reach her 'there' is to connect reincarnation in Buddism and a strand of Judaism (Kabbalah) to the indigenous and Eastern notion of 'feeding' the dead. So I feed this Gilgul I was privelaged to know by learning lessons from how we cared for her and helping other kids in need.
Celebrating Sasha and supporting SickKids patient and family centred interprofessional care, staff and family partnership, patient safety, palliative care and Alagille Syndrome. Thanks to family for love and visits, laid back Dr Michael Peer, Dr Jennifer Russell's tireless coordination of LFHC, GI, CCCU, Gen Surg and IGT, all the staff at Hospital for Sick Children and Max and Beatrice Wolfe Centre and final homebound team Stephen Jenkinson, Dr Russell Goldman and TCCAC.
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