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Make-A-Wish

TrueNorth77's picture

Blog hog today, but I wanted this one to be separate. Curious what everyone's thoughts are on this situation.

So, SD10 has a somewhat rare heart condition that is life-threatening, but well under control by meds. She hasn't had issues with it since they discovered it when she was 3. While she can do most activities like cheerleading, volleyball, short-track events, etc, she can't play basketball and isn't supposed to go on rides anymore (although she has always gone on rides with both Crazy and us, it only changed when we took her on a roller-coaster and Crazy decided that was unacceptable, even though SD wears a fitbit and we were monitoring her heartrate and it never got elevated even close to the dangerous range). Anyway, she has a monitor in her chest that alerts her Dr.'s if something is irregular with her heart, and she carries a defribillator just in case, although that is really for when more physical activity is happening. She also takes meds 3 times a day.

About a month ago, SD's Dr. contacted my SO and Crazy and said that this is the age she usually refers her patients for Make-A-Wish. She said she does this since they can't do all of the "normal" activities most kids can, and they can start to feel left out or different. My SO and I didn't realize Make-A-Wish was for that, we thought it was for terminally ill people. Still, we felt very hesitant about this. For one, SD for the most part leads a very normal life. There are very few things she can't actually do. We take her on vacations, and she definitely is not wanting for anything. Up until May, we actually had planned on taking skids to Disney, but Crazy ruined that by calling CPS on us for taking her on 1 roller-coaster and making it such a huge deal that we feel like we couldn't take her on anything at all (it should be noted that 2 months later, Crazy turned around and took SD to the carnival in our town and let her ride ALL of the rides, which is just mind-boggling, since she had just gotten the Dr. to agree that small rides are just as bad as roller-coasters), so we decided not to and are taking them to Mexico in March instead, but Crazy said she was going to save $ and take them to Disney herself. She seems to have all of this money lately, she can do it. But we knew that they would want the trip to Disney for her Wish, and sure enough- we got the paperwork in the mail to fill out for Make-A-Wish, and SD asked me last night what I thought about it. Before I could answer she said that "they" (her mom) just thought that her dad and I think Make A Wish is for people who are dying, and that she doesn't need a wish and doesn't need to go to Disney. I told her that I think the wish can be a good thing, and It's not that I think she doesn't deserve one, I think she does, but we just want her to think about all of the options before she just decides on something like, say, Disney. Because she is very lucky, and gets to travel, so we want to make sure she really thinks about her options and does something she really wants to do in her heart. SD is a very generous kid, and I love when kids do something with their wish that benefits more than just themselves. I explained that to her, but said that if, after she has really thought about options, she decided her Wish was to go to Disney, that she should do what she really wanted.

She then went on to say she wanted to meet princesses and they give you a coloring book to draw the one place you could travel if you could go anywhere, and she wanted to draw Florida but she doesn't know anything about Florida.......(yes Disney is there, but she has never mentioned going to Florida before at all). Here's where this feels wrong- Crazy is a leech- she will take a handout in a heartbeat. She has no qualms about using a wish for a free trip to Disney, even if she could have gotten the money to go herself. And I heard it mentioned that her 21yr old daughter would be going also. So, it seems like it's all but decided, because she has had so much time with SD and they've had a week to plan it all, that they are going to talk to the Make-A-Wish wish-granters, and pitch their Disney idea. I'm not sure how it works with divorced families, if they send both sides? But my SO doesn't want to go, and I wouldn't either. We just don't feel right about the whole situation. It really feels like a free grab for a trip by Crazy, and you're telling me she's going to take her to Disney and NOT let her go on any rides? I'm sure she will, so now she's taking her to Disney with her wish, and letting her go on rides that she's not even supposed to go on because of her heart-condition (the Dr. specifically said she shouldn't even go on the Teacups). And a kid who is going on a week-long all-inclusive trip to Mexico in March, then is going to have an all-expenses trip paid for by Make-A-Wish later in the year? Ick. We don't want to force her to do anything- it is her wish. But we also know shes the kind of kid who can be giving and do something that isn't driven by her greedy mom.

The Make-A-Wish people will talk to my SO also, and he does plan on just explaining his concerns, and I think this week we'll encourage SD to think of a bunch of options, since Crazy tunnel-visioned her into Disney. We'll see. We really just want her to make sure she explores her options before deciding.

Comments

lieutenant_dad's picture

I'd explain that, since Make A Wish is paying, that SD will have to follow doctor's orders. That means no rides while she is at Disney. She can meet every princess, but she's not going to be allowed on the rides.

I actually don't know if MAW has that rule, but I'd asume they wouldn't put a kid in danger. If doctor says no rides, then SO needs to die on the "no rides" hill. This is one game I would play with BM because she's only doing it for her benefit at the expense of SD.

TrueNorth77's picture

Yes! Funny that you wrote that, I actually was just editing that blog to add the bit about rides. There is NO WAY she wouldn't let her go on any rides!  So how shady is that?

lieutenant_dad's picture

Doesn't a MAW staffer accompany the family? I can't imagine that they don't send medical personnel or require some kind of check-in.

tog redux's picture

Yeah, I'm assuming there are medical staff present and there is some discussion of what the child can and can't do.

Ten bucks says BM gets the doctor to drop the "no rides" thing so they can go. 

TrueNorth77's picture

Ohhh I never even thought about a medical staffer being present! Interesting. No way would her Dr. drop the no-rides thing, not after she just doubled-down on it and how bad it could be for her! My SO may actually rip her head off if she even thought about it. lol. Especially since we just had to talk to CPS about it!

They will just have to go and walk around and do all of the boring no-rides things. I don't think SD realizes that it's not going to be as great as she thinks since she can't go on any rides. And she will reallllly want to go on the rides and be super bummed that she can't. I think there are some virtual things she can do, but I'm not sure what else Disney has if you don't do rides.

tog redux's picture

Frankly, your SO should let the doctor know that BM is allowing her to go on rides anyway - and then HE can call CPS (the doctor). 

Jcksjj's picture

Um...is there a waiting list for make a wish? Are terminally ill kids prioritized? I cant imagine being able to stomach going there if I knew some family should be there in my place making their last happy memories with their child. BM sounds like a loser. 

Thumper's picture

Why does this make me think of Gypsy Rose...you know the mom who paraded her kid around, doctor shopping, put her in a wheelchair??

 

TrueNorth77's picture

Yes! Oh the second Crazy found out SD had this condition she started websites and really laid on the "poor us" stories. I found one a while back, it was gross!

ESMOD's picture

I am not 100% opposed to a child that is not "terminal" would get a MAW.  

Their mission says that it is for children with Life Threatening conditions.. so many kids will survive to adulthood.  

I can see how giving a child a reward for the courage they display in dealing with a medical condition of such a serious nature.  It can also be a reward for the family in general who may have endured stress and financial hardship as a result of the child having this condition.

Without a lot more details of what SD has endured in the past.. I can't really say that she "shouldn't" be allowed this wish.

Now, obviously, it is clear that BM is going to turn the rules to suit herself.. and of course rides would be ok with "her".

I have a hard time reconciling that the kid can do cheer.. yet can't get on even small rides at a fair.

TrueNorth77's picture

I have a hard time reconciling that the kid can do cheer.. yet can't get on even small rides at a fair.

Esmod, It definitely does seem to be pick-and-choose on what is "safe" and what isn't....And volleyball is ok too? Apparently the big deciding factor is if she will "hold her breath". But she can swim!. Go figure. It's super frustrating, and when you have a psychotic mother nagging at the Dr., rules seem to bend in favor of Crazy.

I guess I just feel like there are tons of people out there who have dealt with life-threatening illnesses, Cancer is common-place, millions are affected by diseases daily. I'm not sure why a reward is necessary. Especially when she is not financially strapped. I guess I don't totally disagree with it, but it doesn't feel necessary.

Jcksjj's picture

A child with a critical illness who has reached the age of 2½ and is younger than 18 at the time of referral is potentially eligible for a wish.

After a child is referred, Make-A-Wish® will work with the treating physician to determine the child's eligibility for a wish, i.e. suffering from a progressive, degenerative or malignant condition currently placing the child's life in jeopardy. 

^That's from the make a wish site. 

TrueNorth77's picture

Yeah, we got a packet and looked into it too. She definitely qualifies per their requirements, it's just more of a moral dilemma.

tog redux's picture

I think her point was that the doctor will need to decide if Disney is appropriate based on the inability to ride rides. 

TrueNorth77's picture

Typically the Dr. isn't the one doing the referring though, so then the Doc decides if the child qualifies for the MAW. In this case the Dr. referred, so she already has that qualification. I sure hope she provides a letter about her not going on rides though! 

BethAnne's picture

Your husband can voice his concern about the rides. 

He should encourage sd to think of two alternatives in case Disney does not work out. I wouldn’t burnden the child with ideas that she should be helping others, if she wants to that’s great, if not it isn’t a big deal. If she struggles for ideas, there may be resources on line that list what other children have chosen to do that might give her some ideas. 

Just because sd could go with your family doesn’t mean she could or would go with her mother and sister. She deserves good times with them too. BM may have said she is saving up for the trip but how reliable has she been in the past?

SD’s life may seem normal to you but it sounds terrifying to me. Essential medication 3 times a day and to always have a defibrillator on hand with the threat that her heart could go arry any day? That is not normal. You might have been living with this for a long time now and see sd being well adjusted to it all but that doesn’t mean that it is normal to live like that or for those around her to constantly be wary of her health. 

This is one thing that is good about her condition. I don’t know if there are any other benefits, but this one thing is a good thing that she gets to do because she endures everything and makes it all seem so normal. She gets to be the reason that her family gets a great treat, she gets to be spoilt and to dream of something big. 

If you feel guilty about the funds being misspent on a family that are not on the poverty line then I would donate to the charity in honor of the gift they are giving sd. 

TrueNorth77's picture

Update: I just told SD about a kid someone at work told me about today who had lung cancer and got a MAW- he was 10 and wished for a treehouse. People came and built him a huge 3-story treehouse in his yard, which he loved. I really was just relaying the story because it had to do with MAW and they went so big with his treehouse. I don't actually want SD to wish for a treehouse, although she would probably use it more. Immediately, even before I was done telling the story, SD said, I really just want a trip. She said MAW asked her for 3 months when she would want to go, and she told them June, April, or May. Reminder, we're taking them to Mexico in March. I didn't say anything, but just said, it sucks you wouldn't be able to go on rides. She said, yes I would, There's plenty of rides I there I can go on that aren't roller-coasters. GRRR. So Crazy HAS been planning on trying to let her go on rides. Although if we had taken her, she would have called CPS on us! I reminded her that her Dr. has said she isn't even supposed to be going on most carnival rides (my SO asked the Dr. point-blank this summer to avoid confusion, and she said no, not even teacups). But Crazy has told her she can go on most rides at Disney. I'm mostly livid because she called CPS on us, yet is planning on doing the same thing. I told SD that I'm not going to get involved with the ride issue- her parents can sort that out between themselves, but she should remember that the reason we aren't taking her to Disney is because she wouldn't be able to go on rides, per her Dr, and we didn't think that would be fun for her. I hate this psycho!!