Category Archives: ALS

My Challenge: Mardra


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

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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. 

You can find Mardra and Marcus on the Grown Ups and Downs Blog, Facebook & Twitter.

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

Ice Bucket Challenge

Anyone on Facebook  has seen the Ice Bucket Challenge. For those lucky enough not to have a Facebook addiction, a “friend” challenges you to douse yourself with a bucket of ice and water OR give money to a charity. Most that I have seen are for ALS

I was tagged to either donate $100 to the ALS foundation or pour a bucket of ice water over my head.

I am not playing.

I don’t understand why people are outting themselves for being so cheap that they would rather douse themselves with ice water rather than give money to find a cure for ALS.

I have two friends who have suffered and died because of this horrific disease. Watching their families grieve was not something I would like to repeat. So instead of covering my head in ice water I am donating to ALS in their names.  

What bothered me the most was the laughter that ensued when Abby watched the Facebook postings. I understand this “event” was started by an ALS warrior. A young man hoping to spread awareness. Awareness is so important, I get it. But to me it hit differently. Forget awareness how about raising a cure? 


My friend’s husband was aware, to the very difficult end, of what was going on with his body. ALS affects your voluntary movements. For example, jumping. But it does not affect your involuntary movements (heartbeat). His mind perfectly intact while his body refused to move. That is not funny. It is not something to do as a dare, a joke or just because a friend tagged you in a post. 

I explained why I was refusing the ice bucket challenge to Abby and she agreed. It made no sense to a 10 Year Old why a person wouldn’t give to charity. She might not understand what ALS is, but she knows  her friend at school who has MS. She is aware that there is disease and suffering. At 10 Abby gets that it is fine to be aware but that acts should be put into funding. 

My friend who has a family member ALS is killing put it best: 

ALS is devastating.
It is not being able to hold your newborn son in your arms.It is not being able to talk to your daughter about her day at school. 
It is about watching your beloved angry, frustrated, hopeful, hopeless, depressed, anxious.ALS is about losing the ability to walk, talk, breath, scratch, wipe, eat, blow, run, write, sing, climb, drink, type, roll over, stand, sit, open and close everything, drive, swim, step, dance, draw, click, dial, wash, hum, brush, cough.

ALS is not a cold water challenge.It is not a video showing a person getting splashed or feeling the shock of the cold water as it hits a face. ALS is needing to call for help when you can’t wipe the cold water off your face by yourself because you can’t move your hands. 

(Thank you, Jennifer for allowing me to use your tribute)


I agree with Jen. If you have ALS and this is how you want to create awareness, I am so freaking proud of you. What bothers me is that I don’t want it to become a joke. It isn’t funny. You don’t just do the ice bucket. You pay it forward because you are one of the lucky ones that can.

In one week of ice bucket challenges the Massachusetts ALS received more than $168,000 in donations. Abby asked why can’t people do both? Seriously she just wanted to dump a bucket on my head.  Not to be a spoilsport I agreed. 

Here is my challenge to EVERY PERSON reading this post:

(purple glove explained tomorrow)



How about it? Will you donate $1 or $5 or $100  or any amount you can afford to ALS AND complete the ice bucket challenge? Abby will be donating and so will her parents. 

Consider yourself, by reading this, “tagged”.

To find out more about the ice bucket challenge started by Pete Frates, a man with ALS who wanted to promote awareness, read his story here. For more information regarding ALS and resources for assistance, please visit the ALSA.ORG.