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Things that make me say UGH!

Posted: November 16th 2008

stperron

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OK so this weekend we were at the Wisconsin Dells, at a HUGE indoor waterpark.  Teddy loves water, we were with my entire family, and 59 families from our church.  I was feeling very "safe" with Teddy, because I knew we would have lots of help and support.  However, there were lots of "other" people at the waterpark as well.....One outsider saw me using Teddy's wheel chair to move a moutain of towels, flip flops and other gear to the area where Teddy was and commented that a wheel chair was a great Handcart, and did I get the chair from the Goodwill for this purpose.....and then another outsider thought I should be chastised for NOT parking in a handicapp spot, and taking up a "good able bodied spot".  I explained I didn't have the child who needed accessible parking with me, so I wasn't parking there...I was cussed at!  When is nature going to weed out all of the stupid people?

 

Stephanie

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Stephanie Perron

Caringbridge.org/visit/teddyperron
MotherWhimsey's picture

yeh, we've gotten some

Submitted by MotherWhimsey on Tue, 11/18/2008 - 9:12am.

yeh, we've gotten some pretty amazing comments too. Almost every single time we go out someone asks us "so, does he have asthma?" And I just sit there thinking "it would be a doozy of a case to make him o2 dependent and in a wheelchair."
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Courey mom to Aniyah, 4.5 and Linden, 20 mos. Linden has Mito complex III deficiency with slight deficiencies in complexes I and II. He is o2 and tube dependant.

www.lindenberriesandrosebuds.blogspot.com

lorimar's picture

UGH is right!  I was at the

Submitted by lorimar on Tue, 02/10/2009 - 12:31pm.

UGH is right!  I was at the grociery store with my husband, when some guy(old enough to know better) said, You don't look handicap, because we just parked in the handicap spot. needless to say I wasn't very nice, I yelled at him. I said You should spend one day in my shoes! I went on & on. Which is very uncaraistic of me,but this was the second time it happened to me. I don't feel any of us should have to explain ourselves! He walked away imbarassed &apologized. Stay Strong everyone....God Bless...Lori:)

"NEVER JUDGE A BOOK BY IT'S

Submitted by janice on Tue, 02/10/2009 - 1:40pm.

"NEVER JUDGE A BOOK BY IT'S COVER" Is the line i use for all those who make derogatory comments regarding my handi-cap parking permit or my physical abilities.Last time i checked, you had to have a handicap in order to get a parking permit! For Twenty seven years,all i heard was; You don't look sick, so there mustn't be anything wrong. Maybe you are depressed? UGH! Because of the complexity of mito diseases, I have written a one page "laymens" write up. I leave a stack in my glove box, and take a few with me in my pocket or purse, so when someone asks what wrong with you, you can kindly give them a copy. (it also helps spread the word about Mito) I especially have to hand out lots when i go off island to a mall with my friend and her 9 yr.old son, he loves to push (sometimes race or zig-zag)the wheelchair.( the only time i have to use one at this point) Of course not looking sick from the outside, the dirty looks & comments persue! Life is too short not to have fun...Pain or not! I Choose not to waste energy on what other people think? We need all the energy we can get!!!

will you share what's on

Submitted by polatty on Tue, 02/10/2009 - 10:27pm.

will you share what's on your little card? i'd love to do this myself as i got treated this way for parking in a neutral spot to pick my son up from school--even though i had permission. my child looks normal but is j tube fed and can't sit in carline. i ate him up with kindness and played dumb. he ended up feeling dumb the time i was done with him!

hey i'm 14 and my mito

Submitted by dancer21 on Mon, 02/23/2009 - 4:55pm.

hey i'm 14 and my mito symptons have gotten much worse since april and now i have to use the , elevator, and i miss a lot of school i know i am not the sickest person but it still is frustrating when i have to use the elevator and teachers and students are rolling their eyes when i get on also i hate when people say how luck i am to stay home sick so much i just feel like exploding little do they know i have been in the hospitol over 10 time since april once in shock and had to be in the picu. i would explain it but i dont know how and i dont want to tell everyone every detail of my life

cellolover's picture

dancer21, It is rough when

Submitted by cellolover on Mon, 02/23/2009 - 5:37pm.

dancer21, It is rough when the symptoms suddenly get much worse. I am a bit older (20) but I get people commenting on how nice it must be to not have so much to do. People just don't get that we do less because our bodies cannot keep up with what is "normal." Sometimes people can be dense! If I think someone is acting silly just because they don't understand what is going on then I give them a small idea. Something like, "My cells don't create energy properly, so I have to be really careful how I use what energy I have. When I don't my body quickly starts shutting down."
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Rachel- I have abnormalities in Complex I,II, and V. I also married a wonderful man on June 5, 2010.

beck7422's picture

When a person is rude or

Submitted by beck7422 on Mon, 02/23/2009 - 11:00pm.

When a person is rude or ignorant about disabilities, I describe in GORY detail what I or other people with disabilities go through. I could care less about privacy so I "over share" and don't let these creeps escape until they look like they understand why and how they screwed up. Strangely, it doesn't make me unpopular. I run into a lot of people who have hidden disabilities that are just ignorant of the other disability challenges out there. By being overly open, other people open up with me about their challenges. That said, don't be overly open unless you are willing to hear someone else's troubles as well.