WHY I WILL NO LONGER SHOP AT SAM'S CLUB!!!!!
I went in there today as I do just about every other week with Bryan, we get to the entrance and Bryan gets into one of the motorized chairs as he has a difficult time walking these days due to the progression of his HD, well Joe the in-compassionate guy at the front proceeds to ask Bryan if he really needs the chair (BTW there are about 4 more just sitting there unused), I get up there and say excuse me what did you just ask my son, he then tells me what he said then tells me well why does he need a chair, I just saw him walking in the door. I said justbecause someone does not look disabled doesn't mean they aren't. I asked him ifhe asked everyone that and if he had ever heard of The Americans with Disabilities Act. Talked to the manager and was just as ignorant. I was so mad, I will no longer do business with that store and maybe take my business to Costco. Do I really need to drape a banner over my son that say's I have Huntington's Disease????? No wonder people lose it!!!! So sick of ignorance already.
-Patricia Bryan's Mom
Hugging Dotti and Sparkle Karli Got Me and She Kissed The Heart and Picked Them Out.. I was Holding Them as Tight as I Could Wearing My Special Glasses For The Light and Went Into the Grocery Store and a Worker Just Stared Like Her Eyes Were Glued To Me I Was So Uncomfortable My Body Started To Twitch My Shoulder Jerked It's Crazy and if remembering today wasn't bad enough the pain i have everydayand the disease that just doesn't care a UTI wtf!! What did I do?! C'mon It's Uncalled For my eyes started wandering in the store and the lady says 'what are you looking for?!'
While I know that Aidan's symptoms are visible, it is still hard to hear from complete strangers. Tonight at Sis' softball game, a very, well-meaning concession stand lady told me she was concerned about Aidan when he came to the stand twice & both times he seemed pale & had tremors in his hands. I explained to her that he has JHD & she was very sweet and I think her concern was genuine. I just wonder what others think, but don't say. I worry about kids making fun of him (he has told me that kids have made fun of the way he runs). I hate JHD!
-Denise Aidan's Mom
I just encountered the rudest man ever. I took Cailey to the Oakwood facility on Northline for some blood work. When the guy put the tourniquet on her she stiffened up and jerked her arm back because she was scared. This jackass pulls it off her arm and throws his hands up and says, "That's it, I'm not touching her, I don't deal with fighters." I told him she was scared and that I would hold her arm down and he said no he won't deal with her and for me to come back and let some one else deal with her or just go somewhere else. Seriously? "Deal" with her? WTF??? He's lucky she started crying and I just left so she would calm down. What an asshole! Some people should not work with the public.
-Cailey's Mom Jessica
We stopped at Hobby Lobby to find some items the boys had asked about... Kate was pushing the cart and looking at stuff. Me and Gabe were talking about some beads and Kate stood waiting for us. I happen to glance up to Kate.... At the same time her chorea caused he leg to "kick" and she "stumbled side to side" There was a young couple that happen to be walking past and glared at Kate. I shook my head and we went to leave... Gabe said Mom I have to GO .. I mean GO NOW!!! SO .... off we went to search for a restroom ...As I was waiting on Gabe the young women that had glared at Kate walked by with a different lady... she said " you should have seen that girl, She couldn't even stand still, he arms and leg was flipping out.. I think we should tell the store... she must be on drugs"....I stepped around the corner with Gabe .. and Said Hello, My name is Tara and the young lady your talking about is my daughter and she a degenerative disease called Huntington's Disease.. that affects muscle coordination and leads to mental issues. The younger women said .. " oh, I didn't know" .. I said "you shouldn't assume that the person is on drugs." The older women says " Well if it is so noticeable and you don't want someone to assume than don't take her out in public. " The young looked horrified.. and I looked straight at the older lady said " Bless your Heart Honey....Someday when they are changing your diapers in a home, I am sure you will think about this. " To the your lady I said "Here is the Button Brothers story, I hope you can read and learn and always Thank God for your health." Gabe Looked up at me and said" mom, that was not nice was it. " I said "Nope, but it's ok.. lets go get Sissy and get your shake and her food. I want to say that I am Proud of OUR DAUGHTER.. it take so much for her to do the simple things in life... BUT she keeps doing and trying and keeps going forward. We are blessed to be her parents and We Thank God for her ( and OUR 4 BOYS ) everyday...
The only reason someone would report this would be to hurt me! Heartless...
I remember one time walking into a restaurant and literally everyone stopped eating and stared at my daughter Alysha. I got so angry that I yelled out loud take a picture it lasts longer. I hated when people made her feel uncomfortable I made sure she knew that she was not different and just like me I never wanted her to feel like she was different because of the disease I wanted her to feel like she was a normal child. People who made her feel otherwise got a piece of my mind. The more she progressed the less she talked, words were hard for her to form sometimes
For all you non believers out there, that send me messages of how I need to live with the reality that my daughter Erin is going to die! I say to you, My daughter gets up everyday with a smile on her face, she never complains about anything other that to say "Mom, I have a bruise" She tries everyday to walk, to talk, to be normal and she loves life everyday with a smile always no matter what she goes through. She loves life, She is smart, she is compassionate and loves everyone that comes in contact with her!! she gives me my strength everyday not only to care for her but to be the best I can be! She inspires me. If it was not for her, I don't know if I could cope. If you have ever had a chance to meet Erin, You would know right away what I am talking about. You look in her eyes and instantly see her soul, filled will so much love an compassion, its scary!! So please don't ever message me and tell me that I need to cope with reality of death!! I live for today and only today. Tomorrow is a bonus and only God knows what the future holds!! For all of you that live a healthy life I seriously believe you could learn something from Erin Wade . She is my rock everyday!!
People can be so cruel. It really shows no one understands JHD or even has compassion for people now days. While in Wal-mart the other day Megan was being her normal goofy self, making some screeching noises, walking erratically and such, but not bothering anyone and in general looking super cute. A man pointed at her, making all sorts of gestures with his hands indicating how crazy she was acting, laughing and covering his mouth as he very loudly said "Oooooeeee! That girl is trippin'!" I was in shock, my nerves rattles, I didn't know what to say. He was very intimidating looking. Megan and my older child didn't hear it, so I proceeded to ignore and walk around to the other isle. As I walked passed him, he even had the nerve to put his hand on my shoulder to stop me so he could say more. He said "What is she on? That is whack! Girl is 'insane in the membrane'!" I mean what does that even mean? I understand he means something is wrong with her brain, but why say such a thing about a sweet child? I shook off his hand and walked quickly to the next isle. Why do people have to be such jerks???
-Megan's Mom Deena