Here is a letter from a parent who suffered prolonged pain and finally loss of a child – to any parent whose child has been given a difficult diagnosis or who has lost a child. The writer is Ms Dianne Gray of Elisabeth Kübler Ross Foundation.
First, my most sincere condolences on the diagnosis of your child.
Second, hold on to your to hat, your heart, your mind, and most of all, get ready for the ride of your life.
You will no longer see life as expendable, and you will never be able to go back to a time when the candles of a birthday cake mean looking forward with hope or with an eager anticipation of joyous beginnings.
I know because, like you, I was once the parent of a child who was newly diagnosed with an incurable disease. The most honest advice I can give is this: Let the dishes pile up in the sink (though mold is just plain gross) and let the fresh air in, because there is no time like the present to enjoy your child’s laughter and smell his or her skin. Kick your shoes off, eat popcorn in bed, then have a good hard cry. First for your child, then for yourself.
Honestly, not only is your child’s life ending, but your lifetime dreams have just been “put to sail”, so to speak. Feel sorry for yourself, because you deserve it. Then get up, and make the most of the incredible life lesson that you have just received. It’s called, “Life is Short.” You will never, ever, take a day or an hour with your child or any other loved one, for granted again.
Trust me, there are millions of drugs sold every day to people who are filled with a life lacking gratitude or an appreciation for those around them. You will not be in line for those, though at times you will feel like you need some sort of pharmaceutical assistance to get through the day. Shockingly, you probably will not need them because your drive to protect and love your child will act as a drug itself.
Most important, listen to your gut, your intuition. You know what I’m talking about. Some of you already knew before you were told by your child’s physician, that you were in deep, deep “doo-doo” as they say, when it came to the topic of your child’s health. On those days when you look into your child’s eyes, and you “know” something is wrong, listen. No one knows your child as well as you do. You have probably been “connected” way before the moment of his/her diagnosis, so trust your intuition and take seriously your role as your child’s advocate, mouthpiece, and protector.
Finally, remember that you are loved by a community that is by far larger than you can possibly imagine at this moment. The “club” of parents who have had sick kids is many and we are mighty. We may not carry on our backs a placard that says “mother of dying or dead child”, but we are there and we love you though we don’t know you. We are in line at the grocery store and the mall. We are in the elevator, at the gas station, and on airplanes sitting next to you. We ache for you and somehow, we know of your unspeakable burden.
Reach out for help sometimes when it seems completely ridiculous or terrifying to do so. You never know who will standing beside you. It may even be me.
Blessings as you continue your journey,