Just recently the EB community lost two RDEB teenage souls and my heart broke. This is the same exact diagnose as my son’s, so when this happens I always wonder when will that happen for him. Tomorrow? Next year? 5? 10? The future is scary. It’s unthinkable. It’s something I cannot think about. The only thing I can do is hug him, kiss him, love him.
To me, however, losing him, would be losing child #2.
Child #2 that I would have to bury, and that’s probably why over the years I’ve become such a Mama Bear, someone who will fight tooth and nail over his care and over people who relentlessly judge me about every little tiny thing I do to care for him. Forgive me for wanting to delay burying my second son as long as humanly possible! If I am doing something in particular that perhaps other people in my shoes are not doing… there are reasons. Reasons why we do things the way we do them. Reasons why I defend our “world” so valiantly, reasons why our “world” may be different than yours. As always, our “world” is a sum of our experiences and struggles.
People have always judged me, and at times, quite harshly, on my parenting & my ability to care for him. Each of us needs to take the time to learn more about a person’s history and experiences and feelings before we judge from our own personal throne.
So… allow me to vent.
A few of people in the past, behind my back mind you, said things like: “she does not know what she’s doing” or “I was warned about her”, “she totally overwraps Nicky”, “she never asks Nicky what he wants”.
They say these things behind my back, gossiping, because they gave me advice I never asked for, judged me harshly for doing things differently. Gee… after 23 years taking care of a severe RDEB child I must really be dumber than dumb as far as they are concerned.
As Dr. Phil would say, no matter how flat you make a pancake, it always has two sides. When I tell them I take my cues from Nicky instead of them-they may have EB but they are not Nicky (and they never met him to boot)- they get upset and call me all kinds of vile names and bad mouth me endlessly behind my back. They play the victim-they claim they just wanted to help. Please. Never once these people helped or wanted to help, all they wanted to tell me is what Nicky was thinking, or pass judgement on my parenting.
The truth is, I’ve put Nicky in charge of his health when he was around 7 years old. Which is when I realized he “understood” his condition. If I want to know what Nicky is thinking I will ASK him! If I want to know what Nicky needs, I will ASK him! Every EB patient is different, patients with the same form of EB are different, even twins are different.
This has happened so much in the past couple of decades it’s really quite upsetting. If I want advice I WILL ask. Please don’t tell me what Nicky is ‘thinking’, and please know that not one ounce of my self-worth depends on your acceptance of me and I cannot possibly take your insults seriously.
The way I feel is that I know I am doing my best for him, and no naysayer will ever make me feel otherwise. I just hate it when they masquerade their judgement in “I was only trying to help”. No, you were not trying to help, you were judging someone in a situation different than yours.
It’s sad, but I must say it has happened so much over the past 23 years I’ve developed some thick skin about it. I get judged so constantly and relentlessly that my husband sometimes wonder why I didn’t get upset at so-and-so for assuming this or that when they were clearly wrong.
I tell him:”It’s like… whatever”.
That does not stop me from venting like I doing right now (sorry-but thanks for allowing me to do so) but in the end it makes me stronger. I hope.
As a stepmother I also get my share of judgement. It matters not if my intentions are good or if I really care. It doesn’t matter how many gifts I buy, how many times I took their side, how many times I included them, how many times I invited them to places and things, how many times I sacrificed for them, thrown parties for them or did everything I could to make them feel welcome. Everything I say or do will be dissected and every word will be interpreted in the worst way possible. I am taken for granted, never appreciated and always judged. Months ago I finally decided I was done justifying or explaining things to someone who only wants to believe I hate them, when the opposite is true. And it hurts. It hurts a LOT to be treated like garbage. It’s a sad reality but finally I am done talking or reaching out. I have enough on my plate as it is. It is what it is. The ball is in their court.
I’ve often said that the reason why I feel like I am less judgemental than most (at least I think I am) is because I’ve met a lot of people that suffered intensely, especially after Alex died and Nicky was born with EB.
I grew up in Europe and I’ve been exposed to all sorts of people from all over the world once I moved to the US. I lived in 4 states and had all sorts of jobs where being in contact with the public was its major component. Moving itself, although at the time I didn’t think it was going to be permanent, was a gigantic step in being open-minded, one that I believe I share with my aunt and now my niece, who is living in Ireland at the moment and is enjoying learning about another culture, language etc. That’s why I am not nationalistic per se, I am proud to be Italian and amazed to live in the US, but I don’t believe in superiority. We may be different in many ways, and alike in others, but nobody is “better”. We are all unique and amazing. Respect everyone! Everyone has something to teach you. It does not matter how much money they have in the bank, what the color of their skin is or what they like to eat for lunch. They are humans, just like you. <3
To learn to listen and understand others without judgement is something we all should strive to learn… Thank you for allowing me to vent today.
Hailing Frequencies Closed…
Love & Light,