Our weekend was really ridiculously busy.
We went to a hockey game where my older two kids got to announce the start of the game and we sat on the ice smack dab in the middle of the two team benches. We spent the after-game time meeting the players and letting the kids get autographs.
I took my girls to see the Wiggles from the comfort of a really beautiful suite.
My family went to a flag football game between Tampa’s fire department and Tampa’s police…the kids got to ride on the fire trucks and play in the S.W.A.T. tank.
Sounds awesome, right?
It WAS, I won’t lie, we’ve had a blast of a weekend.
But…..
We got to go to the hockey game because it’s the annual game where the Tampa Bay Lightning recognizes cancer patients in a “Tampa Fights Cancer” event, and Nathaniel and Rachael were being honored as heros of the game for being outstanding siblings of a cancer child.
We got the tickets to the Wiggles suite from a lovely donor who gave them to the Children’s Cancer Center for the families to use.
The football game? Badge Bowl is played to honor a different cancer patient ever year, our sweet friends the Cerchiones are going to receive the money raised from this year’s event. All the families touched by pediatric cancer stood in front of the crowd as we had a moment of silence for the four previous Badge Bowl recipients….four kids out of six….that had died. I hugged my dear friend whose son was the recipient two years ago and wasn’t there to celebrate with us last night.
Over the years of Peyton’s treatment we’ve heard variations of the “WOW, must be fun to get to do all that stuff for free” speech. Sometimes it came with a snide undertone, sometimes just said kindly with the understanding that it also sucks in it’s own special way.
I don’t think those that said it snidely, or with resentment, realize that none of these events have come free.
Oh, we’ve paid. We’ve paid a high price.
We’ve paid for each of those events, for every game, concert, amusement park ticket, party, outing…with our daughter’s health. Her cancer is the reason we go, it’s the source of our greatest pain…so YES, we’ve paid for all the moments of fun we’ve been blessed to have.
It’s nearly impossible to make those that resent the many events we attend understand that we wish to have never seen a Buc’s game…to never have seen the inside of a suite…to have just had our daughter never get sick. They don’t get it. If they did, they would never ask.
We may have fun. We may enjoy some moments that help us forget for a few hours.
But we never really forget.
These things are only in our lives because cancer is in our lives.
And we’re thankful for the generosity of those who have tried to make happy moments for us.
For the stupid person who thinks that a free circus ticket or meeting a football player makes it any better? You have no idea.
We’d give it all up in a heartbeat…a fraction of a blink…if we’d never known what it was like to see our child sick.
You can also find me at Hope4Peyton, The Mayhew Review and Twitter, you should come by, it’s nice…we have cookies! Feel free to email me at Anissa.Mayhew (at) gmail (dot )com.
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.
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!
Perfectly spoken.
I, too, wish Peyton and your family had never had these wonderful things. Hugs.
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.
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
.
unbelievable how blimey stupid some people are
@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.
[...] 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 [...]
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?!
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…