Don’t Tell Me That You Understand…

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By Silvia Corradin

From: Special Mommy Chronicles  (Unpublished Column from November 7, 2006)

“Don’t tell me that you understand, Don’t tell me that you know, Don’t tell me that I will survive, How I will surely grow. Don’t tell me this is just a test, That I am truly blessed, That I am chosen for this task,  Apart from all the rest…”
These are just the first two paragraphs of a poem I ran across while collecting a few for a dear friend of mine who recently lost her son to the same condition that my child has. Having lost a child myself, I have surely read many helpful poems, but this one somehow got stuck in my head because it not only helps bereavement moms deal with their loss, but it spoke to me on how hard it is to deal with the general public when parenting a child with a disability.

How many times friends and relatives, even friends and relatives of other moms or patients, think they ‘know’ what we go through? Unfortunately it goes farther than that. These sometimes well meaning individuals judge us for decisions we make, things we do or things we say out of despair or loneliness! I’ve seen it happen often in these past 10 years. People that have no clue of what a special need child’s mom’s day is like is not in any position to judge the treatments we choose for our children, the decisions we make for their well being and certainly cannot understand what it means to be so angry that it seems to us as if nobody cares that we vent at anyone that will listen. Just yesterday I was very upset at the new company that provides my son’s supplies because after a week and 3 messages left to call me back, nobody could be bothered to call me back so I could place my order! Finally I picked up the phone and made one more phone call only to get their answering service again, so I left quite the crude message.
Needless to say, the person that does not understand how badly my son needs these bandages, someone who never had to watch their child in pain day after day for ten years, or have to sit there hearing their cries of pain, could not even remotely comprehend my rage and surely would be prone to judge me because of it.

To those compelled to judge a parent about a situation they know nothing about I only have one thing to say: Exchange places with me, for one day. Just one day. For one day you will have to change my son’s bandages, see my son’s wounds, hearing him cry in pain, change his diaper, prepare his tube, give him his medicine and take care of everyone of his needs. He cannot dress himself, nor get a drink from the refrigerator for himself. His needs are many and constant.

Why would this help? Because, you see, it’s not pity, nor “poor” this and that which moms of special need children want. What they want is to be understood, to be given some slack when they have a bad day, and foremost, not to be judged. It’s only when someone walks in someone’s shoes that the light bulb turns on. Anyone willing to exchange places with me?

The Bible says it best: Luke 6:37 “Do not judge, and you will not be judged; and do not condemn, and you will not be condemned; pardon, and you will be pardoned.”

Mom to 3 boys, 1 in heaven, 2 on earth. My first son Alex (whose demise is most likely EB related) was stillborn at full term. After a miscarriage, I had my second son Nicky, who has the Recessive Dystrophic form of Epidermolysis Bullosa. My youngest son, Connor, is 100% healthy, and I never, ever take it for granted. I am an author, photographer, graphic artist, webmaster, blogger and more.

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