MAW guilt??

[katieb4]

I totally understand this feeling. I keep getting this twisted mental picture in my head......you know the commercials at the end of the superbowl when the winners answer the question "you just won the Superbowl, what are ya gonna do?" and they scream "I'm going to Disneyworld!"

only in my picture the announcer says, "Say, your kiddo has cancer, now what are you going to do??" and I say, "we're going to Disneyworld!!'

How messed up is that??

I'm excited for sure and the kiddos are over the moon. It seems cliche to say, Man, I'd give up this trip of a life time to skip cancer....but I so would, and I have to remind myself, we aren't going to Disney because Gabbie got cancer, we are going to Disney to take a break from it!

 

[torge29]

I guess it's not really guilt but more a feeling of being undeserving of this very special "prize". We have been dealing with Alissa's issues since she was born and I think it's just who we are now so to our family it's no big deal.

Today we added three more specialists after seeing her regular pediatrician for a visit . . . Some days I do feel deserving
We get to see nephrology for high blood pressure and have to have quarterly visits with endocrynology - Alissa has not grown one inch or one lb in exactly two years. She is 13 but is only 69 lbs and 54 inches tall.
I also just made an appointment with the genetics who we haven't seen in over ten years. Nothing was ever found on genetics/chromosome testing until endocrynology just did some blood work. Apparently the testing has changed significantly with new techniques etc. so they found she is missing part of Chromosome #9.
So all kinds of new appointments for the next few months but A DISNEY CRUISE in October/Nov. We have tentative dates on a PTR.

 

[IrishIz]

I can understand where you are coming from. I never really planned for get a wish for my daughter.

Well not until we had an horrible day combined with possible horrible stuff coming up. I felt so bad for her. We went to do a feeding button change, she had a panic attack (literally telling me she's going to die...she's 7), she couldn't relax, button couldn't go in, stoma starts to close (she closes quickly), off to ED for something smaller, they take forever but get something in, off to GI in morning where they stretch the stoma 2 sizes with her SCREAMING...bad day. I felt so horrible. She might be having surgery on her foot and it sounds terrible (breaking it).

So I called in a moment of "I want to make her happy". I just called to ask what age was good. They JUMPED at getting things started now...even though that wasn't my plan. Next thing I know...she has a wish.

If they didn't want to do it they would never have jumped or been so happy to do what they do.

I hate "benefitting" from her medical issues but I'm so happy she's getting to have a once in a lifetime experience at Give Kids the World.

She first wished for a cruise but with 7 of us it pretty impossible.

Don't feel guilty.

 

[torge29]

I totally understand this feeling. I keep getting this twisted mental picture in my head......you know the commercials at the end of the superbowl when the winners answer the question "you just won the Superbowl, what are ya gonna do?" and they scream "I'm going to Disneyworld!"

only in my picture the announcer says, "Say, your kiddo has cancer, now what are you going to do??" and I say, "we're going to Disneyworld!!'

How messed up is that??

I'm excited for sure and the kiddos are over the moon. It seems cliche to say, Man, I'd give up this trip of a life time to skip cancer....but I so would, and I have to remind myself, we aren't going to Disney because Gabbie got cancer, we are going to Disney to take a break from it!

I have had the exact same twisted mental picture. YIKES!!

 

[mfd25wife]

I am a wish grantor for MAW. Please do not feel guilty. The wishes are for ANY child who has a life threatening illness and is 2.5-18 yrs old. What it comes down to is that it is your child's wish. Try not to think of it as something that you are all getting and don't need. We want to give them a smile for a while after all they've experienced. That's why we do our best to make sure whatever the wish is, it is the child's wish and no one else's. Some children choose computers, bikes, shopping sprees, room re-do's, "I want to meet xxx"and some choose trips. Your child receiving a wish does not take away from another. The average wish is $7500 now. Many are not that much, some are more. There are many fundraisers and corporate donors that assist with these. As the children are approved (the doctor verifies they qualify), and the money is available, the children are assigned to us to contact. Wishes are not for only for terminally ill, but must be currently in a life threatening condition. It isn't really chronically ill children either unless it is life threatening. Please enjoy the trip!

 

[katieb4]

I am a wish grantor for MAW. Please do not feel guilty. The wishes are for ANY child who has a life threatening illness and is 2.5-18 yrs old. What it comes down to is that it is your child's wish. Try not to think of it as something that you are all getting and don't need. We want to give them a smile for a while after all they've experienced. That's why we do our best to make sure whatever the wish is, it is the child's wish and no one else's. Some children choose computers, bikes, shopping sprees, room re-do's, "I want to meet xxx"and some choose trips. Your child receiving a wish does not take away from another. The average wish is $7500 now. Many are not that much, some are more. There are many fundraisers and corporate donors that assist with these. As the children are approved (the doctor verifies they qualify), and the money is available, the children are assigned to us to contact. Wishes are not for only for terminally ill, but must be currently in a life threatening condition. It isn't really chronically ill children either unless it is life threatening. Please enjoy the trip!

Thank you for the information!! We totally will enjoy every second...I wish we didn't have to sleep!

IrishIz....I felt the same, and actually inquired after a similar experience, Gabbie was back in the hospital and just so so down! She had basically missed almost everything fun for the last 10 months and she was understandably depressed. Disney dreaming has helped us through two more hospital admits.

Torgue, ok, thats a little weird! LOL....