Sunday, May 15, 2011

Mito families are my heros!

I had a mito moms breakfast/brunch/lunch today. We did call it off before the supper hour this time! That's not always the case. I'm not sure how time flies by so fast! We are pretty convinced that given the right resources we could solve our mito problems and the world's problems too. We decided long ago that mito will be conquered not by the FDA, Washington DC or Merck and Pfizer. We'll defeat mito around the breakfast table at Cracker Barrel or the lunch meetings in the mall food court or on the support message boards and FaceBook and mostly in elevator rides with innocent medical students while riding up to the 10th floor! Yep, mito momas, daddys and grandmas will be the ones to stomp mito!

I have been pretty bugged by something during our meeting though. Each time I think of it I get all jittery and jumpy in my stomach. I should have done something, I should have done more than something. In the end though I'm not a confrontational person. Not generally anyway. I envy those momabears who can really stand up and fight. I also roll my eyes and shake my head at those crazy momas who roar at any and everything and can't be taken seriously. I think I have the type of personality that is all or nothing. If I start roaring it may turn into a roar about the weather or the day of the week or the way my water glass was one ice cube too short. So instead I mostly don't roar! I let people in line in front of me, I just replace my slightly dirty fork with a clean one from the next set, I pick at my steak that could be cooked a little bit more. Still, there are times for roaring! Today was one of them!

My friend Emily had to bring her son Jackson with her. You know if there was anyway possible she would have avoided loading a 46 pound kid, his 45 pound wheelchair, 2 or 3 inhalers, meds, feeding tube, formula and water! But sometimes it just can't be avoided and Jackson is a ladies man so it was a treat to have him with us. As she left the back wheel of the wheelchair got hung a little on the chair of a lady next to us. The nicely dressed church lady turned and looked crossly. As Emily tried to dislodge the wheel the look continued and the church lady made no move to help move her chair. Neither did her companion, the church man in his nice suit. Once the wheelchair was free, church lady huffed and straightened her chair. All of this took about 30-45 seconds but every time I think of it I feel my blood pressure go up. I asked shockingly if Emily saw this and she replied "all the time". Seems people also don't take the time to hold doors open even for wheelchairs.

I've chastised myself for not saying something. For not standing up for Emily and Jackson. In all likelihood Emily would not have wanted me to cause a scene. What would likely follow would be pity and no one wants pity. A better outcome would be thankfulness. An appropriate outcome would be for church lady and church man to be helpful instead of hindrances and then be thankful that they don't have to load, unload, load and unload a 46 pound kid and his 40 pound wheelchair and a backpack full of supplies just to have a couple of hours for breakfast and friendship. Thankful that they haven't spent the last 3 weeks fighting with a diaper company to send out the proper diapers for a 4 year old. Instead having to settle and buy Pullups whose main function is to catch a small amount of pee while letting the kids feel the "wetness" of the rest of the pee. In a wheelchair bound child this doesn't help with potty training but helps in soaking the clothes and wheelchair with pee. Yep, church lady should be thankful!

And that's what I should have told church lady and her church man. And all the other diners who stared instead of speaking and smiling to Jackson. Jackson loves the ladies and has a smile that'll knock your socks off! That's what church lady missed with her soured face and disgruntled huff. I pity her!!!

And while I'm on my soapbox.... Don't use the word "retard" or "retarded". Unless you look into the face of "retarded" everyday, don't use it. If you don't see it written in numerous clinical notes to describe someone you love, don't use it. Unless you are speaking medical talk or rebuilding a motor, leave "retard" in the closet.

And that concludes my public service announcement and soothes my soul for today!

1 comment:

Clara-Leigh said...

You are so stinkin' candid and tell it like it is....a mark of a true me!!!!
I totally get it with the church lady and man, but like you, I am usually just rolling my eyes and then feel like "what difference would it make? If they don't get it now, why do I think I could change their thoughts...." But perhaps we are terribly wrong!!
And the word retarded.....we are there too. Our son is retarded. It's official on paper, his charts, school, and I totally agree. It is a terribly misused slang for many people, and as a youth, I must say I am sure I threw the word around from time to time, and I feel like poop for ever saying it!!!!! It's time the world woke up, embraced all of these special people...GOD CREATED THEM, TOO!!!! Oh, and give us parents some slack and help, too!!!! You coming to UMDF symposium in Chicago??