The Facebook support group that I belong to, dedicated to Megan’s rare disease of HLH, has been a blessing through her illness. I’ve written before about this special group of people; the only downside of membership is sharing in their grief, as some are inevitably lost to this monstrous disease.
Belonging to the group these last couple of weeks has been pure joy. I’m not sure what triggered the first story of hope…a child, fully recovered from this cowardly disease which attacks mostly children. That first story led to a rapid succession of others, including my own opportunity to share Megan’s glorious recovery. The stories were wonderful: children and adults restored to health and normalcy after months, or even years, of needles, chemo, procedures, and suffering. After months of my own fear and worry, it was gratifying to read about dozens of complete victories, just as Megan steadily moves through recovery herself. However, it is impossible to forget that the reason these stories bring hope is that not all HLH stories have happy endings.
Hope is crucial to human existence. History and the evening news are filled with the very bad things that people are capable of doing to each other when they have no hope. I know how critical it is to my own emotional well-being. Life is difficult enough when I have hope…hope that my family is well, that we have a bright future, that I’m loved. When Megan was clearly dying and no one knew why, the only thing that kept me from complete collapse was the divine Hope that if we couldn’t take her home, her Father would. Knowing that God loved my baby even more than I did gave me peace in the middle of terror and chaos. I can think of nothing more powerful than that.
“Hope is definitely not the same thing as optimism. It is not the conviction that something will turn out well, but the certainty that something makes sense, regardless of how it turns out.” –Vaclav Havel