Thick skin comes from injury and hurt not laughing

It’s been an interesting week here in Champaign-Urbana. The Daily Illini, a local paper written and published on the campus of the University of Illinois, had 1 letter to the editor and 1 editorial addressing the usage of the word “retard” or “retarded”.  Both were well written and laid out the reasoning as to why the words shouldn’t be used in any civil conversation or otherwise.  To cap that off a local TV station found the story of the radio DJ who used the word on air more than a month ago and asked to interview the station manager and my family.  We agreed thinking it would create awareness.

The radio station has been wonderful in working with Larkin’s Place at the Y, offering PSA’s, and promotions of any upcoming events we have.  However the story turned on both of us, as I was unaware the DJ was no longer on the air or employed by the station and the TV story slanted it slightly enough so that viewers thought he was fired over this incident.  Which he was not.  Not that it matters because if he had used any racial slur he would have been fired and the r word is no different, we just need people to understand that.  But enough people wrote in about how terrible it was that he lost his job over it and it made us out as if we were on a witch-hunt.  Which we aren’t.  We are on an education campaign and the DJ failed to understand why using the r word is hurtful and not funny.

I was dismayed at the comments that followed because they came from supposed “higher education” students and graduates of said University.  I normally don’t read these comments as people who hide behind their computers refusing to meet face to face with those they hurt are cowards.  They don’t deserve my time or efforts.  It was a constant stream of how funny the word is and it doesn’t mean anything, thicker skin is in order, and my personal favorite “freedom of speech” and being PC is tiresome.

Political correctness (adjectivally, politically correct; both forms commonly abbreviated to PC) is a term applied to language, ideas, policies, or behavior seen as seeking to minimize offense to gender, racial, cultural, disabled, aged or other identity groups.

Doesn’t sound too bad to me and honestly it just seems to be an elaborate explanation of what my grandma used to say “just be kind” and “treat others as you wish to be treated”.

We are not on a witch-hunt.  We are here to educate so I will begin with the not so funny part.

When Larkin’s doctor sat down with two terrified parents holding their 3-week-old baby girl and delivered the line “Larkin has Trisomy 21” there was no laughter.  Instead there was a mother who held her baby girl close and felt the air leave the room.  There was a father who, now changed forever, began to heave from his stomach and choke on tears.  A mother who stopped the doctor from talking so that she could turn to her husband and calm him with the words “there is a lot of love right here and we are going to be fine and so is she.  You, me and this little girl … lot of love here and that hasn’t changed”

A mother who handed baby girl to her husband so that he could feel her in his arms.  Feel her life.  Feel her breathing.  Feel LIFE and know that we would navigate this hiccup.

A mother who asked the doctor to step outside and show her to a phone.  A guise to remove the doctor from the room so dad wouldn’t feel the impact of the following:  Mother to doctor “her heart, her heart, her heart” all said in a gasping whisper.  Doctor to mom “Amy it’s ok and they can do so much these days if there is anything wrong”

No laughter.

When Larkin’s Pediatrician and Neurologist sat down with two terrified parents holding their 5-month-old baby girl, who had been thriving until then, and delivered the news “Larkin has Infantile Spasms” there was no laughter.  Instead there was a mother who held her baby girl close and felt the air leave the room.  There was a father struggling to absorb yet another blow.

No laughter.

Anger yes.  Frustration yes.  Sheer terror yes.  A sudden education in the human brain and treatments yes.

Nothing funny.

When Larkin’s Neurologist in a large city away from the safe confines of home sat down with two terrified parents playing with their 19-month-old girl, delivered the news “Larkin has Lennox-Gastaut syndrome” there was no laughter.  Instead there was a mother who leaned back heavily and felt the air leave the room.  A mother who instantly felt as if she was falling away while sitting down.  A mother who realized that her baby girl could die.  A father who by now was used to the blows but still flinched as the sledgehammer came his way.  A father who now had so much education under his belt responded through his grief with the responsibility required from a parent of a child diagnosed with triple the weight of catastrophic brain damage.  Developmental delays.  Mental retardation.  Retard.  Retarded.

No laughter.

Nothing funny.

Now lets walk down the fun part.

As parents we are changed.  Grandparents, extended family on both sides, friends, community members, school friends, Fourteen’s life and outlook, co-workers, and strangers, are changed.  The majority of those who surround this little girl are different.  Andy’s friend said it best just last week.  “We are all changed because of Larkin.  We are more understanding and careful with our words and actions”.  Music to our ears because it was genuine and heartfelt passion for the war we wage.

We all feel differently about what is important.  We all feel the sheer and total joy at what this little girl has accomplished.  When her smiles returned and the first time we heard her laugh, sitting up on her own, responding to her name, giving us affection, using her treadmill to ingrain the pattern of walking, using her walker all the way to using her walker purposefully.  Eating cake for the first time on her 4th birthday.

A mother holding her baby girl close.  A father swinging his daughter over his head with joy.  Air back in the room.

Lot’s of laughs and even tears of joy.

But not in humor.

Joy yes.  Praising her doctors for their help and guidance yes.  Praising God for giving us such a gift yes.

We have so much pride in this little girl that when we hear the word used as an insult, way to demean someone, to feel less than, to laugh at a joke – it is beyond disrespectful.  It shows that the user has no compassion, love, or empathy in his or her life.  It shows a lack of education.  It shows a lack of being kind.  It shows a lack of treating others as you wish to be treated.  It shows ignorance.  It shows the users flaws.

She has no control over what life has handed her.

We have had no control.  And to address the “get thicker skin” comments.  Skin only gets thicker because of abuse and scarring, it’s natures protection but not what was intended.  There are friends who leave us out of play groups.  Friends who have children who ask questions or stare in a manner that clearly shows they have been exposed to an inappropriate conversation about our daughter.  Left out of birthday parties and that gap will only widen as Larkin gets older.  It’s a grief that never ends and our skin does become thicker but so does our compassion, understanding, and acceptance.

We do have control over how we react and education is our first approach.  Our second is to walk away with our sunshine and leave those who desire darkness to remain there.  Only because we know their day is coming.

There will be a day when they are affected by mental retardation.  It’s not a question of IF but WHEN – There and then maybe they will finally realize the joke has been on them all along.  But we won’t laugh.  We will accept them with open hearts and arms.

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8 Responses to Thick skin comes from injury and hurt not laughing

  1. Jen says:

    Beautiful. Honest. Real.

  2. Cynthia says:

    Man I’m crazy about you….and about what you say…..

  3. LINDA JONES says:

    extremely well written and thought out, I can only imagine flubbering in a rage and not being so coherent.

  4. Stephanie Wetzel says:

    Amy-I saw you on the News the other day. I am so proud of you and your persistence in fighting for goodness! You are in inspiration to so many and I just wanted to send you a lil reminder! love ya! stef

  5. cathy says:

    beautiful writing here. I hear how fiercely (in the best way) you mother your children.

  6. Tara Wilson says:

    This is absolutely beautiful!

  7. Jim Bean says:

    Amy, I am so moved by your writing. Larkin is so lucky to have a mom like you. My brother and I had that kind of mom. The world is a better place because you are here and I feel honored and privileged to call you friend.

  8. sabrina smith says:

    what a wonderful story, and what a wonderful way you have with words. I have worked in special ed for over ten years, some of my time in life skills and some of my time in essential skills; I find it odd that many people reactions but I try to change their ignorance. No matter what I teach the kids I learn so much more from them. they are amazing!

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