Have I used this word myself in the past? Ashamedly, yes. Have I used jokes like "rides the short bus to school"? Yup. (I know, you're all shocked that I'm not perfect ;)) And now I have two sweet, precious children who are "special", "mentally slow" (which is a definition of retarded), and ride the "short bus" to school! Do I think that I've been punished because I said these things or teased others when I was a kid? NOT. AT. ALL. Because Abby and Micah are anything but punishment. They are two of the greatest joys and blessings of my entire life. But these words... these words showed my ignorance. And they are completely inappropriate. And it would be awesome if one day, they were a thing of the past... words that no one uses anymore. And maybe by the time Micah and Abby are old enough to know what they mean, we will live in a society that is informed. And aware. But getting there takes a step at a time.
Some of you have heard my story a hundred times. So today, I'd like to share another mom's story of how her special little one changed her life forever. Her name is Amy too. :) Feel free to check out her blog below and leave her some encouragement for bravely sharing her experience and feelings.
And please stop by www.r-word.org and make the pledge. For Micah and Abby. For Larkin. For any other individuals you know who would be heart broken if jokingly said "retard" and they were standing next to you. Think about it. Thanks. :)
Amy Armstrong's story:
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.
Larkin is now 5 1/2 years old and her health has been stable since 2009. Amy & Andy Armstrong live in Champaign Illinois and have a son Chase now 15 and twin girls B & E who are 15 months old. You can read more posts like this at www.momologist.com
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