Editor’s Note: March marks the annual “Spread the Word to End the Word” awareness day, a national advocacy effort to eradicate the word “retard” from our collective vocabulary. This post, written by Chambana mom Amy Armstrong, is a powerful reminder that there are people behind that hurtful label. And sadly, this campaign is needed now more than ever.
Amy’s daughter, Larkin, is the inspiration for Larkin’s Place at the YMCA.
Larkin is now 10 years old and her health has been stable since 2009. Amy and Andy Armstrong live in Champaign and have also have an adult son and 5-year-old twin girls. Read more about the Armstrong family’s journey at Amy’s blog, www.momologist.com
By Amy Armstrong
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.
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 and choke on tears.
A mother who quieted the doctor 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 in order to be alone with her.
“Her heart, her heart, her heart,” this mother said, in a gasping whisper.
“Amy, it’s OK and they can do so much these days if there is anything wrong,” the doctor replied.
There was 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.
There was no laughter.
Anger, yes. Frustration, yes. Sheer terror, yes. A sudden education in the human brain and treatments, yes.
Nothing was 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 and 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 — again. 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 this new sledgehammer came his way. A father who now had so much education under his belt that he responded, through his grief, with the responsibility required from a parent of a child diagnosed with catastrophic brain damage.
Developmental delays. Mental retardation. Retard. Retarded.
As parents we are changed. Grandparents, extended family on both sides, friends, community members, school friends, our son’s life and outlook, co-workers and even strangers are changed by Larkin’s diagnoses.
The majority of those who surround this little girl are different now.
My husband’s friend said it best: ”We are all changed because of Larkin. We are more understanding and careful with our words and actions.”
This was music to our ears because it was genuine and heartfelt passion for the war we wage.
We all feel different about what is important. We all feel the sheer and total joy at what this little girl has accomplished since those terrifying moments in airless rooms.
When her smiles returned. 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 purposefully and well. Eating cake for the first time on her fourth birthday.
A mother holding her baby girl close. A father swinging his daughter over his head with joy.
The room is flooded with air.
Lots 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 R-word used as an insult, a way to demean someone, to feel less than, to laugh at a joke – it is beyond disrespectful.
It shows that the speaker has no compassion, love, or empathy. It shows a lack of education. It shows a lack of kindness. It shows a lack of treating others as you wish to be treated. It shows ignorance.
It shows flaws.
And when I hear “I don’t mean those kids,” or “I am not calling your daughter that,” or my favorite, “it’s just a word,” then I wish for the super power of forcing them to stand in our shoes for 30 seconds and to know the terror that the word “retardation” and “retard” bring into our lives.
It does mean “those kids.” It is my child’s diagnosis being referred to as an insult.
It is far from “just a word.”
It is a diagnosis that brings a lifetime of worry, grief, pain, and advocacy to prove to this world that our beloved child has value.
She has no control over what life has handed her.
We have had no control.
The brain damage our daughter has because of her seizures has left her unable to understand the R-word and it’s ramifications for her.
However, her older brother does understand, as will her twin sisters, who are still too young to fully grasp it right now. The twins open Larkin’s bedroom door every morning with a cheery, “Good morning, Larkin!” and wait with excitement to walk her to the bus and wave goodbye. With equal anticipation, they await Larkin’s bus in the afternoon.
They love Larkin. They are the ones you hurt when you use the word as a casual insult. You hurt us as parents. You hurt our extended family and loved ones.
Because we love a little girl who has mental retardation.
It’s a challenge to help her battle through and learn as much as she can and live a beautiful, happy life.
Isn’t that all of us want for our children and those we love?
For those who suggest we need a thicker skin, we reply that skin only gets thicker from abuse and scarring.
There are and will continue to be friends who leave us behind. 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 remaining 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.