I don’t know if it’s because Nicky is getting older, EB is getting restless, I am getting older or what is the culprit, but I feel as if lately my fuse has shortened quite a bit. Of course it might also have to do with the election and my unrelenting disgust at all the lies being told by one Pinocchio who flip flops every two minutes depending on who is listening. 
At least I can look forward to that being over in a month. All I know is that I had to stop drinking wine, or my occasional bottle of Vodka because I felt I could not cope changing my son’s bandages without it. Only now I feel like I am going to explode. What am I going to do? I bought some sugar free lemonade stuff that ‘tastes’ like Margaritas, Appletini and others, without the buzz. So far I think it’s helping a little. All I know is that when I hear of my friends with EB children are doing badly, I get even worse. I try to keep calm, cool and collected, but on the inside I want to explode. God help us all.
But apparently, aside the fact that I am sick as whole hell of my son suffering and I wonder when a cure is coming, there are people out there that are truly in la-la land, and they, unlike me, have zero excuse. You know, that mystical place where they are always right no matter what. Even if they just have been proven wrong and given facts. We can call this place stupidland. How’s that?
Just recently someone made a comment about a certain famous historical person which was completely wrong. Not even close. I know a lot about this individual because… well, I don’t know why. He was interesting, intriguing. I actually have several books about him. At any rate, when I calmly told her of her inaccuracies and went on giving her the real truth, she, who obviously has a shorter fuse than me , proceeded in telling me: “Well, if you believe history books! *rolls eyes“. That’s right. Instead of being grateful, or at least tell me ‘oh, I didn’t know that’ or anything even remotely similar, she’s telling me she does not believe in history books! She is rolling her eyes at History Books!!!! “Hilarious!” I mused. We can’t argue with ignorance & stupidity. I left it at that.
Yes, she must have been there 500 years ago to witness in person all the facts, and that’s why she does not believe them. Or, more likely, is it that she was embarrassed by her ignorance so she decided to cover it up with stupidity? Is being unstable and bitchy part of her mystique? What has this world coming to? What’s eating at her? Why does she have to take it out on someone that lived so long ago? What’s it to her? What did he do to her? Oh… but, it gets better. One of her “friends” wrote me a private message and then blocked me so I could not respond. She said that “I’d kill you and the kid you that you should have aborted. You should have been aborted as well. You ignorant, condescending piece of trash.” That email was full of insults, one after the other. It was so bad I had to report it to Facebook, and I report NOTHING to Facebook. This is all because I was giving them FACTS! I know, how condescending of me, giving them facts! I tell you, she crossed the line when she said I should have aborted my son, it just showed the ugly side of the internet. I tell you what she is, and is a coward! She blocked me so I could not respond. How nice! Maybe being unstable and bitchy is part of her mystique!
Perhaps I could partly understand if she ever held a dead newborn like me, but I know she hasn’t. And I know she does not have a child with EB and her husband is 100% healthy, so I wonder what her deal is. For anyone that hasn’t dealt with a loss or is not living with EB every day, I must tell you, I’ve forgiven people for doing and saying horrible things to me that have lost a child or have a child with EB-or both. I know, because I get it, and they have forgiven me in return. Having a loss or having to inflict pain to your child every single day does things to you that you never want to know or understand. NEVER.
This of course does not mean that we’re allowed to being awful. We are not. But I know how easy it is to ‘go there‘. I work every day to go to the place of peace and happiness. I am a work in progress. I am not perfect.
I just finished a book about a mother whose newborn died and she explained in there how she could tell the story, but understanding it was a whole different thing. Some things in life have to be lived to be understood and are beyond describing. In her words: “No matter how eloquent the words, their impact can fall flat when not accompanied by a similar experience.” I am posting the whole introduction of the book below. What a great story!!
Peace to all… and to all bereaved and EB mommies out there… here’s a prayer from me to you. <3
Here’s the whole introduction to her book “The Bereaved Parent” by Harriet Sarnoff Schiff
There is a tale about a prince fleeing from revolutionaries determined to kill him and take away his throne. The prince, terrified, sought shelter in a peasant’s cottage.
Although the peasant had no idea the frightened man was a member of the nobility he gave the prince refuge by telling him to hide under the bed. The prince had no sooner done so when his pursuers battered down the door and began to search the cottage.
The revolutionaries searched everywhere. When they came to the bed they decided to prod it with knives rather than to move the cumbersome piece of furniture. At last they left.
The prince, pale but alive, crawled from under the bed after hearing the pursuers depart. He turned to the peasant and then said “I think you should understand that you have just saved the life of your prince. Name three favors and I will grant them.”
The peasant, a simple man, thought for awhile and said: “My cottage is in great disrepair and I have not had the money to fix it. Can this be done?”
“Fool!” cried the prince. “Of all things in the world, why did you ask so small a favr? I will honor your wish.”
“Sire, my neighbor sells the same wares as me in the marketplace. Would it be possible to change his location so both of us could make a better livelihood?”
“Idiot,” said the prince. “Of course I will do as you wish. What foolishness, when you could have iches, to ask such nonsense! Take care that you do not anger me with another silly request.”
No longer able to restrain his curiosity, the peasant said, “As my third request I ask only that you tell me how you felt as the knives were being pushed through the bed.”
The prince, infuriated, shouted, “How dare you offend majesty by asking of my emotions! For this act I will have you beheaded tomorrow!”
The prince called in a few of his retainers and had the hapless man carried off to the local jail.
All through the night the man wept fo his folly and feared what would happen on the morrow.
When the sun rose his jailers came to him into a courtyard where an executioner with his black hood stood awaiting the terrified man.
Forced to kneel on the block he heard a soldier call “One, two……” but before he could say three, nother soldier on horseback came tearing into the courtyard calling “Stop! The rince commands it.”
With those words the executioner, whose blade had been resting on the peasant’s neck, withdrew the sword. The shaking man arose and faced the soldier who had saved his life.
“His Highness gives you his pardon and orders me to give you this note,” said the soldier.
The peasant, relieved to the point of tears, began to read the first terse words: “As your final favor you wanted to know how I felt under the bed when the revolutionaries came. I have granted your request because now you know!”
The Prince had shown the peasant more graphically than words could possibly have done just what the horrendous ordeal had been like. The Prince no fool, had realized that some things are beyond describing. No matter how eloquent the words, their impact can fall flat when not accompanied by a similar experience. And so it is with bereaved parents.
Harriet Schiff
