Finally, and perhaps most importantly, when you begin your work with our son, please help us to have hope. When we first learned Jack was affected by Spinal Muscular Atrophy, hope was a scarce commodity in our home. We didn t hear much from the doctors about living with Jack from day to day they didn t tell us about the good days we would have together as a family. Looking back, I now realize it was Jack s job to teach us these important lessons. After all, doctors at children s hospitals don t spend a lot of time with kids when they are well.
Parents do that.
Jack needs us to view his disability and his future with a sense of hope, whether life feels manageable at the time or not. Three years ago, when Jack s bout with RSV led to intubation and a three-week hospitalization, it was very hard for me to be positive and hopeful. But as I looked at my son lying in the intensive care unit, kept alive by a ventilator, his eyes wide open wondering what was happening to him, I believed it was important for Jack to see me smiling and to hear me telling stories as usual, giving him the message that I was hopeful and confident of his ability to recover from his illness. Somehow, Jack did bounce back from that harrowing illness. And ten days later, after he had been successfully extubated and we were preparing to go home, the head physician in the Intensive Care Unit came by to wish us well.