I would like to introduce you to Madrathe mother of a wonderful man who has Down Syndrome. I believe every parent of a child with special needs has the same challenge.
My Challenge: I am afraid of monsters.
As long as I can remember, I have known that a monster is not the lifelike replication of a furry puppet. I’ve also never really been afraid of Frankenstein or Dracula style monsters, fantasies that were created to emulate the human condition, but in and of themselves began as a figment of a writer’s imagination.
No, as a young girl and still today my fear of monsters is much more palpable, cynical and real.The opportunity to see and read stories of the monsters that walk among us are everywhere and every day.
The news is filled with them. One example that recently crushed me involved high school boys acting monstrously towards two of their innocent and more vulnerable peers. My stomach turns now and hollows; my heart pains as it beats living with the long minutes of rape, exploitation, jeering and confusion. I type through the tears for the parents of the victims, the anger they must feel, the shame, the fear…
I scold myself. I shouldn’t have read the article. The headline told me all I didn’t want to hear or believe.
What am I supposed to do with these images, at once swimming among and drowning my own thoughts? This being one of the many examples of monsters that look like normal human beings, living among us. And they are everywhere. Both in power and searching for power. On the streets and online. In my imagination and in real life. They have always been and always will be.
For the first 21 years of my son’s life, we lived in our own shell. I went to work and home and kept a close circle of friends. Marcus went to a private school where I felt he was most safe while learning and growing. From the first days of his life I feared that his facial features would make him easily preyed upon; I felt compelled to focus on preventing the possibility of any ill-intentioned creatures causing him harm.
The word overprotective has been lobbed in my direction and that too carries its own weight of parental guilt and consequences.
Less than two years ago I decided to put in a window to our closed off life. I finally embraced the 21st century and Marcus and I claimed our own little corner of the World Wide Web. We launched Grown Ups and Downs, with much thought, trepidation, and coffee.
So far, we are a very small clan and don’t attract much attention from monsters. But I know they are there. And, that is part of why we are there, too. A song I often refer to for courage is “Hands” by Jewel: For light does the darkness most fear.
I don’t have a great arsenal of defenses against potential monsters. I don’t have a superhero shield or a sword of steel. All I have are two things: language and love. Marcus inspires me every day by sharing his stories and his humor. He gives me his love unconditionally and he accepts me when I am curled up and hiding under the blankets. He reminds me when I rant that, “No one is perfect, Mom.”
Monsters feed themselves lies and vomit it upon others. Monsters are even afraid of other monsters, which is why they huddle in packs, and commonly use whatever means available to dull their human senses.
The days when fear pulls on my shirttail and coaxes me to hide, Marcus shows me how his light can shine and warm others who may also be afraid. He tells me dreams the monsters could not believe, and we climb towards those dreams.
I know the monsters’ presence will grow with us and there are days they strike. There will continue to be days the when monsters touch both those I do and do not know and leave me bruised and shaken in their wake as well.
I do not foresee a day when I won’t be afraid of monsters. And monsters, true monsters, will not be changed.
But others, those who are looking for kindness, reasons for optimism and good news. Those who are looking to learn and have opened their minds to a spectrum of human possibility, it is for them that Marcus’ light shines the truths of love and life’s potential. His enthusiasm and ambitions take a little bit of power and energy from the darkness monsters feed upon: ignorance, fear, and misunderstanding. It is with Marcus by my side that we aim to show from our little corner of the world a life of innocence, of ambitions, of love, and try to shine brighter yet these things into the world. These are the only weapons we have and we wield them with hope.
In the end, only kindness matters…
|Marcus and his mom Mardra
When Mardra sent me her Challenge I immediately thought of Robert Sayler. Then the horrific parody of the ALS Challenge was done to a young autistic man. Yes, cruelty happens, but when your child is unable to communicate, when their very being is something that can be preyed upon you live with another fear. I send Abby to school every day knowing she could be bullied, targeted and hurt. Yet I know I have provided the tools she needs to alert myself, her father or a trusted adult to keep her as safe as possible. David teachers her self-defense and drills into her the need to be aware of her surroundings. Yet, I know with all the tools we give her a Sandy Hook, a 9/11 or a Boston Marathon could happen. Or worse.
With Boo the fears are different. Boo cannot tell me what happened. For example last week she fell and scuffed her knee. She told me her therapist at school “pushed slide”. I knew that probably didn’t happen. When I asked her therapist the next morning, I said Boo said you pushed her off the slide. David was there and said no, I was walking her to the car and she tripped! We all had a chuckle over it. Boo bruises easily, she is always getting a bump or scratch. Recently she had one on her back. It turns out Abby dropped her. No biggie, but reading Mardra’s challenge reminds me that some day it might be. That Boo needs the language because one day it could be her that some high school bully pranks with a bucket of feces. Or worse. If you have time, check out Mardra’s article on the Huffington Post. It’s not just the monsters out there, it’s the people who say our children need to be hidden.
What's your challenge is a series that was inspired by a program I created at Abby's school. I am amazed at how honest and hopeful the challenges have been. Thank you to all who have contributed. To submit your challenge, please e-mail me at email@example.com
Darling Mardra, this is beautifully put. We all fear the same monsters, yet only when we shine our light into the dark corners where they lurk, will we flush them out, weaken their energies, show them up for what they are. I am so proud of you all for embracing the blog world. We must continue to send out our positive messages, for the next generation's sake.
1) Thank you Kerri for inviting and sharing.
2) You're wrap up is so true and perfect.
And 3) My friend Hayley – who commented here – shared today her own demons and the battle. Check her poem-post here: http://www.downssideup.com/2014/09/blogger-vs-troll-i-am-only-human.html
I always say I'm afraid of people, but you clarified this: I'm afraid of the monsters…and the bits of monster that hide in otherwise nice people. The internet has only shown me that my worst fears were true.
I fear the monsters for myself, those I love, and the beautiful people like Marcus. I often let this fear stop me, so I applaud your attempts to let Marcus shine the light, even on the monsters.
This was such an articulate way to describe those fears we feel for our children, who are vulnerable because of their challenges. Thank you for sharing this story – Marcus sounds like a very smart and strong young man.
Loved reading this post. I agree 'only kindness matters.'
Wonderfully descriptive of basic fears and in response so much strength and courage. Beautiful. Inspiring.
Wonderful post, Mardra. I always enjoy reading your inspiring and thought-provoking words.
Thank you for being so vulnerable and giving your fear a voice. I find it difficult to open myself up, but hopefully one day I hope to be as brave as you. My two ASD kids make me more aware of the monsters out there. I wish the news would focus more on how to break the cycle that lead them these people to become monsters. I hope emphasis on better parenting and anti-bullying will help these monsters develop different coping skills.
Very inspiring! I think you said it best when you said: “All I have are two things: language and love.”
So glad you opened that window, Mardra, and shared your hopes and fears here. And Kerri, your closing thoughts really made me think. As a parent of two children who CAN communicate, I hadn't thought about how terrifying it must be for parents of children who can't.
Incredible post, incredible words and I'm really scared of monsters, too. Sigh. It's so hard when our kids can't tell us what happened. Each time my son has an injury, he tells me that his friend Braxton did it. Well, he and Braxton are not in the same classroom or the same school any longer, so um, probably not. I'm so glad to get to know Mardra better here, too!
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