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 |
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 firebailey@gmail.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.
ReplyDeleteI 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.
ReplyDeleteI 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.
ReplyDeleteLoved reading this post. I agree 'only kindness matters.'
ReplyDeleteWonderfully descriptive of basic fears and in response so much strength and courage. Beautiful. Inspiring.
ReplyDeleteWonderful post, Mardra. I always enjoy reading your inspiring and thought-provoking words.
ReplyDeleteThank 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.
ReplyDeleteVery inspiring! I think you said it best when you said: "All I have are two things: language and love."
ReplyDeleteBeautiful!
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!
ReplyDeleteAs the parent of two adult kids, one of whom had physical special needs as a child, I worried about monsters, too. My time would have been better spent enjoying our kids and trusting God to fight the monsters. Thanks for your wise words. Thanks also for adding it to DifferentDream.com's Tuesday special needs link share!
ReplyDeleteMonsters harbor bits of evil and cough it upon their prey. I don't understand their joy in distressing others. Monsters must be stood up to for protection of the 'kind'.
ReplyDelete