It’s astonishing how quickly your life can change forever. I have recently realized how grateful I am that we can not see the future. Ours would have driven me literally crazy and destroyed what happiness I had at the time, had I seen it coming.
Early in Megan’s illness, when we didn’t yet know what we were dealing with, our concerns seemed significant: organ damage, transfusions, a delay starting school. As the weeks wore on and she became more ill, I began to long for that list of concerns. On the darkest day, I watched her deteriorate by the hour. Terrified, I called our family and told them to come to the hospital–now. Praise God, the doctors arrested her free fall just as we got the diagnosis which saved her life. It was a miracle, as were the next few weeks which saw our fighter inch back from the abyss.
As the weeks have worn on, we have often dealt with loss, sometimes daily. News that she not only wouldn’t start school with her friends, but will miss at least the semester. News that she would lose her hair. Round after round of infection. Frightening seizures. Loss of mobility. Potential relapse. Possible transplant. The news that we could be still dealing with this at this time next year. One emotional blow after another…I became shell shocked. We grieved each loss, but when your child is gravely ill, you don’t allow yourself much time for that: you cry–hard–and then you look up, wipe your tears, and ask what do we need to do. Things which a month or a day ago would have seemed intolerable, quietly become the new normal.
There really is no choice but to keep moving, putting one foot in front of another, even when you’re exhausted or terrified. Because it’s your child, and because they’re still here and need you. I’ve now met too many other grieving parents whose loss has a finality to it that ours doesn’t. We still have hope, and we’re still fighting. We may have a long and frightening journey ahead of us, but we will never give up.
“Never, never, never give up.” –Winston Churchill