Comments on: Wonderful Things I Wish We Didn't Have

By: Kristine

Kristine — Sat, 29 Nov 2008 02:48:54 +0000

People are amazing in such wonderful, and such awful, ways!

When I was in my early 20's I took two of the boys that I had been caring for every summer since I was 17 at an MDA summer camp, to an amusement park. We were told to either go to the front of the line with their wheel chairs, or go up the exit ramp. These boys loved roller coasters, but it was a struggle to get them in and out of their chairs, as neither of them at this point in their lives (12 and 13 years old) had much muscle stength left to help in the transfer. So when we got them in to a car, we rode it a few times. The staff was great about it. The other riders…not so much. The comments we would get were pretty amazing, until I would respond with, "sure, let me just go get his wheelchair so I can get him out." Usually that shut them up. Very in your face though with a wheel chair. Not so much with other kids though dealing with cancer, or autism, or down syndrome. If people could just think before reacting…

By: BlapherMJ

BlapherMJ — Wed, 26 Nov 2008 16:32:26 +0000

It's amazing how people can be jealous or resentful of "stuff" you "get" because of an extremely ill child. I experienced this when we went to Disney on a Make-a-Wish Trip with my stepdaughter last year (she's in leukemia remission). The looks and comments we got for boarding the plane early, moving to the front of an hour-long line, and receiving VIP treatment with the many characters was kind of surprising to me. Don't people stop and think, even for a second, that there MUST be a reason for the special treatment?!

By: Ya’ll Are NOT Funny! | Hope4Peyton

Ya’ll Are NOT Funny! | Hope4Peyton — Tue, 25 Nov 2008 10:30:59 +0000

[...] totally forgot to remind about my Sunday post over at 5 Minutes for Special Needs, you can go check out my post about the price we pay for the all the "free" stuff we [...]

By: PeytonsMom

PeytonsMom — Tue, 25 Nov 2008 01:27:23 +0000

@Barbara, I'm so glad that my going on a rant makes things clearer for you. I do think most people do these things out of the goodness of their hearts and for that we are totally indebted. They have made our lives easier to live throughout this journey.

By: rickismom

rickismom — Mon, 24 Nov 2008 09:45:28 +0000

unbelievable how blimey stupid some people are

By: Danette

Danette — Mon, 24 Nov 2008 07:06:01 +0000

It's so sad that people can be so thoughtless. Of course your family (and any family) would trade all the games and events in a heartbeat if it meant your child could be healthy.

@Debbie & Ecki – we will probably never go to Disney World (even with the passes to avoid the lines, the crowds would be too much) but if we did I wouldn't hesitate to use the special pass. If the other people in line had to wait in line with our boys for a few minutes, they would probably encourage us to use the pass too, hehe .

By: Ecki

Ecki — Mon, 24 Nov 2008 03:17:01 +0000

People who haven't been there, don't know.

A Disney World story — We were loaded on to the bus first and someone in the line made a snide comment. I finally had enough and screamed "she had Down syndrome, autism, a heart defect, and a vision impairment. Is that handicapped enough or should I chop off her legs, too?" Grrrr. I can't believe some people are so petty.

By: Melody

Melody — Mon, 24 Nov 2008 03:09:28 +0000

Perfectly spoken.

I, too, wish Peyton and your family had never had these wonderful things. Hugs.

By: Debbie Yost

Debbie Yost — Mon, 24 Nov 2008 01:00:46 +0000

We are considering going to Disney World in January. We plan on telling the park that Peanut has Ds so we can get special treatment. From what I understand, we won't have to wait in the long lines. We'll basically get to use the fast pass for all rides. Do I feel guilty? No. My family goes through a lot on a daily basis and will for the rest of our lives because of the extra attention and care that is needed for Peanut. My older girls sacrifice a lot including their mother's attention at times. A trip to Disney World with all the lines is hard for a child with Ds to stand through. She again needs a little extra consideration or we may not be able to go and enjoy ourselves. But, like you, if given the choice, I'd choose the lines. I'd choose the easier life for my daughter. I'd choose the ability to speak and play with friends her age without therapy sessions and extra work. I'd choose not living in fear everytime she gets a cold that she'll end up in the hospital because her low muscle tone makes it harder to fight off the cold. I'd choose the easier day to day life. And really, we've had it easier than a lot of other children with Down syndrome because she's been relatively healthy. I guess what I'm trying to say in my long winded kind of way is AMEN! I couldn't agree with you more!

By: Barbara

Barbara — Sun, 23 Nov 2008 22:58:50 +0000

You have shared this in a way that helps me understand better. I sometimes wonder about the offers made to children and others with life-threatening illness, suspicious of pity. But just like some people are clumsy motorically, some are clumsy socially. Largely, I'm prone to assume good intentions from all.