Photo: Courtesy of Nancy Netherland
Lala, now 9, is living with a rare, often debilitating and complex medical illness?a rare, systemic auto-immune disorder that causes high fevers, chronic pain, wasting and inflammation of her gastrointestinal tract, joints and eyes and makes her feel so fatigued that she often sleeps 20 out of 24 hours. Last year, Sarah, my 10-year-old, completed a successful, experimental drug-dosing clinical trial. I am told that she is cured, but she will still need biannual blood tests and liver scans as part of an ongoing, multi-year safety study. While the impact of the test drug on her fertility and growth are unknown, her elevated risk of liver cancer is clear. Lala still endures test after test, with dozens of medical specialists trying to manage the evolution of her illness. And while some of those procedures are routine, others can become complicated all of sudden, like last month?s MRI?scheduled for two hours, it stretched into 12 hours and required an emergency intubation. They are not having your typical childhood. Last month, the girls and I counted 28 medical appointments on the colourful chalkboard calendar we use to chart the course of each month. But I?m making sure that it?s memorable and as full of as many sparkles as possible.
Wherever I can, I sprinkle fairy dust and glitter to transform the sterility of the medicalized parts of their life. And whenever I can, I try to find the grace in letting go of ?things going as planned.? We ad...