The "R" Word and Beyond

The other night we went out with family and friends to celebrate my mom's birthday. It was a lovely evening, great company, and tasty Italian food. We took Evie out in her wheelchair and everything was going smoothly. Then she had an episode (her small body goes rigid, her hands become manic, and she breathes heavily) that lasted about ten to fifteen minutes. I sat there in my chair, cradling her stiffened body, feeling helpless and trying not to cry. It finally passed. I felt relieved and worried at the same time. My husband excused himself from the table to take a call and I handed Evie off to G-Boss. Then the second upsetting event occurred that evening...

As I sat there collecting myself after her episode, a sound I am all too familiar with made it's way to my ears. The sound of adult men (about mid 30's), sitting no less than 6 feet from me, making "retarded" noises. I'm sure you can hear it in your head now. These sounds are sometimes heard when someone is telling a story and decides that either someone or something is/was stupid and the best way to convey that is through making fun of those that are not able to articulate well, have no real control over their vocalizations, or can not communicate any other way (like our Evie). I felt torn. We were at a nice place, it was loud (so I wasn't fully aware of what they were conversing about, but I was totally sure about what I heard), and I was feeling emotional. Probably not the best time to approach strangers about their insensitivity to those around them.

I related this story to my online support group and it brought up other instances when we just don't know how to approach someone (especially if is a co-worker, friend, or family member) when situations like this occur. Then I remembered a similar situation with someone I love very much. They used the "R" word to describe another driver on the road. I was on the phone with them and felt comfortable saying something. It was the first time I actually spoke up about someone using that word and will probably not be the last.

However, it isn't limited to the "R" word. People who jokingly say, "Aww...isn't that special...special ed!" or who mockingly make unintelligible sounds and spastic gestures to indicate someone or something being "stuipid" are equally insensitive. We hear the same excuses all the time when people are trying to justify this type of behavior or use of the "R" word, "We didn't mean it that way," (doesn't matter it still hurts) or "I don't think of him/her like that." (how does that make it okay? what about other people?)

When it comes to people you know the best suggestion I have is to ask to speak with them privately (no one likes being "called out" in front of others). Explain to them that while you know them and (on some level) understand they aren't aiming those comments toward your family member or friend, it still hurts and other people don't know them may not be as understanding. Approaching strangers is a totally different story...I still haven't figured that one out just yet and usually sit in silence

I do have a few friends that casually use the "R" word and it always feels like they just screamed it through a mega phone. I stiffen and bristle, but I give them some slack. I know their hearts, but maybe my silence isn't doing them any favors because others don't and they may become the fuel that ignites a fire.

Momma Said Knock You Out

I LOVE BOXING!!!

When I first heard of my friend's boxing gym (Boxing Bunnies) I thought, "I might enjoy that." But I was very hesitant. I still had Evie at home full time, logistics just seemed insurmountable, and what if I looked ridiculous (at times I'm sure I do). I told myself, "Wait until she is in school." And that is exactly what I did…I waited. Then it was time to put up or shut up.

I took the leap in January and committed to two months of unlimited classes. I told myself I would go at least twice a week and as time progressed I would increase my workouts (I am now up to three classes a week). During my first class I felt a bit intimidated. There were women there that had obviously been coming for quite some time (seriously, some of them are beasts on a heavy bag). I felt like I just couldn't keep up. But I was not willing to turn in my boxing gloves just yet.

You see, I have some pretty strong motivations for pushing through the pain. I need to be stronger and healthier in order to care for Evie. She needs me. If I am not there for her, then who is going to be there? I also needed an outlet for my anger. Watching my baby girl struggle to do the simplest of tasks makes me so angry. It was festering inside like a cancer. I stopped feeling joyful. I stopped finding things humorous. I stopped being me. Sure, I could plaster on a smile and fake it well enough when I needed to, but those closest to us knew I was slipping away into a world without hope. Ann Marie and my fellow Bunnies became one of my life savers (the other one is a topic for another day).

The workouts are intense, our trainer is an evil monster at times, but we always have fun and we are always supportive and encouraging. Don't feel comfortable doing Hello Dolly's? No problem we'll work out a modification that will work for you, but keep trying because you'll get there (barring you have a physical complication that makes it impossible).

While I was initially intimidated by those feminine beasts beating those bags, I was also inspired to get to where they were. I was not going to be satisfied just getting through my workouts. I wanted to knock them out! It was a competition against myself to be better than I was during the previous workouts. And it is working.

• I can hold a plank for 60 second (not every time, but I'm getting there).
• I can do at least 10 push ups (on my knees) in a row and not feel like I am going to die.
• I have a pretty decent right hook.
• My arms and calves are starting to get some definition.
• My knees don't hurt as much as they did before I started boxing (except for a recent case of tendinitis).
• I can do a burpee!!!
• I spar and have taken a few good shots to my well protected head.
• I also learned how to braid my own hair.
• And I swear my butt looks better (but it could be in my head).

I didn't measure or weigh myself the first two months. That was not my goal (but it is a perk) so it was not important. However, at the beginning of March, I measured myself and by the beginning of April, I was down an entire inch around my chest, half an inch in my waist, and a quarter of an inch in my hips. My clothes fit better (in fact some are too baggy). People have been noticing that I look slimmer (Woo-Hoo!) I'm happier and feel more balanced. I have more confidence in myself. I honestly feel like if I set my mind to something I am going to do it!

That confidence has led me to decide that I CAN (and will) run a half marathon in honor of my daughter. Over the last four months I have built up my endurance, my strength, and my determination to cross that finish line at the Disney Princess Half Marathon*.

*Team Evie already has a group on Facebook to keep people up to date on my progress, fund raising (my personal goal is $5,500K), and information on how you too can help us in our quest to cure Rett Syndrome by joining team GP2C at the Disney Princess Half Marathon in 2015! You don't have to run to help make a difference.