I’m often deeply moved by certain, simple sayings. The undeniable, straightforward truth of them strikes me as utterly profound, and I am strangely comforted. ”Life goes on for the living”, can bring me to tears. It is the worst part of the loss of a loved one, the moving forward without them, but it must happen, it will happen. The certainty of those six words, has the power to take my breath.
“There, but for the grace of God, go I”. This, more than any other, has so deeply impacted my life. My grandfather used to say it to me when I was a child. I didn’t appreciate it then, as it was being used to teach me not to pass judgement on those less fortunate than I, and as a young girl, I wasn’t interested yet in life lessons.
But as I aged, as I began to see the world, and of course, the magnitude of suffering that exists in it, my grandfather’s words evolved.
There, but for the grace of God, go I. For the religious, the implication is clear: There, homeless on the street, dying in a hospital bed, mourning the death of a child, but for the grace of God, I would be. Only God’s grace separates us from the wounded, the dying, the oppressed.
For the secular person, the meaning is much the same: There, in that unfortunate man’s shoes, but for the chance of fate, the alignment of the stars, the left turn rather than the right, the tilt of the moon…..I would walk.
Only the imperceptible presence of spirit, or the invisible dance of atoms, divides us from each other, and each others circumstance.
Since the birth of my son, I can’t hear of a sick child, an orphaned child, without crying. I’ve pored over blogs of families who’ve lost their children. I’ve depressed myself and most of my family. Every one tells me to stop. That I’ve got to stop. That I can’t save every child, so better to focus on what’s good in the world, in my own life. I would have given the same advice. Why torture myself? What can I do, anyway?
Then I saw Baby N. ( I’ll call him that as some countries have rules about using the names of their orphaned children). My travels through the online communities of grieving parents, had led me to the community of families with living and deceased children suffering from a terrible, terrible disease called EB( Epidermolysis Bullosa). This is a condition in which the afflicted person’s skin is as delicate as the skin of a butterfly, and tears and blisters as easily. For this reason, the children of EB are called the Butterfly Children. In severe cases, the child won’t live a year, due to infection and other complications. In all cases, they suffer pain everyday of their lives . And they are so brave. I’ve fallen so completely in love with so many of them.
Maybe it’s his little shoulders, or the tone of his soft skin, but something about him reminded me so much of my own son, who is the exact same age. But, at that moment when I first saw him, my son was up in his crib, in his warm pajamas, in his nursery full of toys. My son has a mommy who cares for his every need. He has a daddy who calls from work in the afternoons to inquire about his activities for the day. Baby N is alone in a hospital. Baby N was given up by his mother who couldn’t sustain the financial burden of his care. Baby N endures pain and itching and stinging baths and bandage changes without a mommy to kiss away his tears.
The tilt of the moon….
This is where the pain and frustration of, “but, what can I do?”, would normally set in, and I would turn away, turn back to my comfortable life and wait for the sadness to melt away.
I am not going to do that this time. I can do something. I can never forget that Baby N is no different from my baby. He has the same curiosity, the same love of toys and music and songs. He wants to be held and comforted when he is sad or in pain, just like my son; That he deserves everything that my son has, and I can work to make sure he gets it.
That’s exactly what I am going to do. There, but for the grace of God, go I.
With all my other posts, I try to be funny, and irreverent, to stimulate or enlighten. Then, I press publish and leave the rest up to you. You can read it, you can like it, and if you are so inclined, you can share it. This time, however, I’m going to shamelessly ask that you please share this post. On your FB page, email to a friend, or just in your conversations. If Baby N does not get adopted and is moved from the hospital to an orphanage where they do not have the ability to provide the daily care he needs, he will not survive. Follow the links below and donate to his adoption fund if you can. Or, try to get the word out to as many people as possible- you never know where we’ll find his family. Or, find your own Baby N and shout to the tree-tops about her.
Thank you for anything you can do. When we find Baby N a home, we’ll start in on “every child” in the world, and go from there….
http://reecesrainbow.org/new-family/thechildren – Click on Other Angel Boys 0-5 to find Baby N. You can make a tax deductible donation to his adoption fund, right there on his page.
http://www.debra.org/ – Learn all about EB and how you can help work towards a cure.
My favorite blogs from families with ” EB Sweeties”:
http://randycourtneytripproth.blogspot.com/ – This one will break your heart wide open- Little Tripp just recently lost his battle with EB. Click on his Videos link- you WILL fall madly in love with this brave, brave boy.