When your child is diagnosed with a fatal condition at the age of 3, your life is changed irrevocably. Hearing they will lose the ability to walk, feed themselves, and be independent is hard enough, but putting a limit on the number of years you will be together is catastrophic. The neurologist tried to put things in perspective with the following analogy: say you’ve been planning a trip to Italy. Saving money, learning the language, imagining all the places you’ll go, and the experiences you’ll have…finally the day arrives and you get on the plane to Italy. Only the plane lands in China, or Greenland – somewhere completely unexpected, a place you are totally unprepared for and hadn’t planned to go. “You have two choices,” he said, “you can either bemoan the fact that you didn’t get to Italy or you can enjoy the opportunity to visit somewhere you never expected to go.” It’s a nice analogy, except being told your child will die before you do isn’t like finding yourself in a country you never meant to visit. It’s like being dumped on another planet with no oxygen, no recognizable landscapes or food, and no way back to where you once were.
Numb, you look at your beloved child and nothing about him or her has changed. You ask the doctors a thousand times, “are you sure?” Gradually, you begin to find other families going through the same thing you are. It is a link you cling to for hope and help, a lifeline of information and inspirational people. Then you start going through their pain as well as your own. Children you’ve heard about for years actually die, and you grieve each death as if it was your own child, because it is. You pray, beg, plead for each life to be spared. You shatter when they are not spared, and wonder, “how many days do I have with my son or daughter?” You feel an irrational sense of guilt for passing something on that you didn’t know was hidden in your DNA. Countless nights, in hospital beds and at home, you weep as your child sleeps, making sure you don’t wake him or her with your convulsive sobs for his or her suffering.
You also treasure every moment you have together. The world may have radically changed it’s axis, but you still have your child (for now) and revel in every smile, just as you hate yourself for every procedure you have to make them go through to be healthy, hoping your presence at his or her side will mitigate some of the pain. Looking in the mirror, you see a face you no longer recognize, but hope your child does. Yes, we all have a fatal condition the day we are born, in a sense. There is mystery though, and hope for a long life. The doctors give you the statistics, “most kids with this will die in their late teens or early twenties”, and you want to scream “take it back!”
Then, for some of us, as readers of my blog know, you process it over and over again. Especially when another precious child who shares your child’s diagnosis is laying in an ICU, fighting for his or her life, and you pray with everything in your being, “beat the odds”, “live, please, dear God, make those doctors eat their words, and let my darling son (or daughter) live.” It’s high stakes, but you gamble anyway. What choice do you have?
May peace, blessings and compassion fill your days. Namaste’.