The first words that came to mind when my son’s surgeon referred our family to paediatric palliative care were “hospice” and “death.” I interpreted her referral as, “we should begin to let Micah die.” My heart pounded, my eyes swelled with tears, and my body trembled. Micah was not dying, and because I equated palliative care with death, I was devastated.
Micah’s case was medically complex. Our family struggled to synthesize the various options and recommendations. He was being followed by six different specialties without a single primary physician. As his mother, I felt overwhelmed, helpless and ashamed.
Once I gained a broader understanding of palliative care, I realized that they would help to advance our family’s needs by taking a holistic approach to Micah’s care. Slowly, I began to embrace their presence.
Micah received palliative care for six intense months, and now I understand that palliative care is not about dying; it’s about living as fully as possible. Micah’s palliative care team nurtured peace, joy, closeness and fullness.
Story and photo originally published in The Huffington Post.