MAW guilt??

[torge29]

I am brand new to the forum and am wondering if any other MAW parents felt guilty about receivng a wish.
My 13 y/o DD has multiple medical issues along with physically and mentally handicapping conditions (epilepsy, perthese disease, neuro problems, MR, and on and on) but . .. she is not "sick".
We met with MAW last week and DD will probably be receiving a Disney cruise wish sometime in the fall.
We really could never afford to take our family of five (DS -17 and DD - 7) on a trip like this but we do OK. We have a decent house and jobs and don't "need" anything.
I just feel like maybe we are taking away what someone else could use more.

Did anyone else feel this way?

 

[Singledad]

I am not a MaW family, but I wanted to reply with, I can understand feeling guilty about it. I would have a hard time with it myself. However, think of it as a strange way of winning a prize, your child "won" (She is fighting every day with her problems) and this is her prize for her fighting. The fact you get to enjoy it too is all the better. Cause you help her win every day's little struggles.

 

[jmartinez1895]

Do not feel guilty. If the MAW people did not think your child was deserving of the trip they would not have given it to you. Your family deserves this trip. Think of all the money that you have spent on medical needs and also all of the hours you have spent in doctors offices. I am thankful that your child is not " sick" and will be able to enjoy the trip to the fullest. Relax and enjoy the trip. Soak up the magic and don;t spend one more minute worrying about this.

 

[Menfusse]

I feel guilt...well, I suppose that's the word. I don't feel like I'm taking something away from another child, but I feel like we are "benefiting" from my child's illness? My daughter has mitochondrial disease. She is sick, but has periods that she's doing well. It's progressive and we don't know what the future holds for her. We also would not be able to do a Disney trip of any kind. My husband works as a deputy in our local jail which is very little money. We live in a rural area and law enforcement pay is a joke. I don't work because of my daughter's needs. Finding a job that would allow me to take off as much as I would need to, especially in this little town would be impossible. We make it, but that's about all we do.

So, I feel odd, guilty...not sure what the emotion is, but I feel it too.

 

[Cheshire Figment]

I used to work for the American Red Cross and during my 13 years went out on several very large disaster operations. We seemed to feel (opinions of people, not of the organization) that many people do not want "charity" but were willing to accept "assistance". This, for example, was why the Red Cross would give families vouchers for new clothing instead of having them select through batches of used clothing.

I think those who may feel guilty when receiving a Wish trip (or similar) feel that they are receiving charity; just change your thoughts to that people are assisting you in what you need to do. Semantics can lead to very powerful emotions.

 

[jmartinez1895]

I used to work for the American Red Cross and during my 13 years went out on several very large disaster operations. We seemed to feel (opinions of people, not of the organization) that many people do not want "charity" but were willing to accept "assistance". This, for example, was why the Red Cross would give families vouchers for new clothing instead of having them select through batches of used clothing.

I think those who may feel guilty when receiving a Wish trip (or similar) feel that they are receiving charity; just change your thoughts to that people are assisting you in what you need to do. Semantics can lead to very powerful emotions.

Well put, when the tornado's hit our area our church handed out food. We would go to homes where the people had been trapped for days, try to give them food and they would tell us to to save it for someone who needed it. We would get them to take the food eventually.
I talked to a lady that I know who took a wish trip and she said she felt the same at first until she got there and saw how much it did for her child. It was something that they needed.

 

[alizesmom]

Your child deserves a wish for all she has gone through. The rest of the family deserve a break as well. Your wish will not prevent another child from getting his/her wish. Enjoy it. I know we did. Karen

 

[buffettgirl]

Here's what I know about MAW. There is no set amount of trips they hand out - so by your child "taking" one you are not "taking one away" from someone else. Also, MAW's function isn't just for kids who are dying. They are there for kids who are suffering chronic conditions too. So sometimes it helps just to change our mindset about what MAW does.

But I do understand. My child also has multiple medical conditions, the least of which is type 1 diabetes, and we've been encouraged to contact MAW. I haven't yet because I don't consider him sick, just like you said. And I just have this feeling that if we went on a MAW trip that those around us would think my child is sick and treat him as such. Reality is that yes, he's sick. He just doesn't know it. And I"m happy to keep it that way.

 

[Mama Who]

MAW screens carefully. They do not give trips to kids or families that don't meet their criteria. Your kid doesn't have to be dying to have been dealt a tougher hand than other kids and if MAW thinks her hand is tough enough to warrant a special gift, I would trust their judgement.

 

[a1tinkfans]

You were granted a WISH....please dont think about anything other than enjoying the time spent with your loved ones!

Have a wonderful time filled with many memory making moments

 

[7165red]

Just think of how much your daughter will enjoy the trip, no reason to feel any guilt just think of the joy of being together on this trip.

 

[maroo]

We had this issue with Lauren. Feeling guilty because she "only" has cerebral palsy and she was basically a happy teenager who doesn't have a lot of the complications that CP can bring - like seizures, speech difficulties, etc. She can't walk, stand or even sit up on her own at all. She almost died after a big surgery, though, which was certainly life threatening. And her condition was called "progressive."

But her doctor put her up for a wish and we certainly were not going to tell her no. We asked the doctors then if they knew something we didn't, and they all said no...

And we had a few people who were cruel - including people right here on the DIS - who said that she didn't qualify for MAW and were rude to me and her parents. Her family is in a similar boat financially - they are doing fine, but their medical bills are high and they had never been able to do Disney as a family. They had issues with work for her parents - where people were rude about letting them off. We had rude comments posted on her you tube video.

And I felt bad - almost guilty that we were going.

But now...almost 4 years later...they are saying that Lauren probably doesn't have CP at all. She is being tested for some rare forms of Muscular Dystrophy and her future is quite uncertain. And I just want to SCREAM at the people who were so rude to her and her family when they went on the trip.

Please, please don't feel bad. It sounds like your child has a lot of challenges and MAW considers those life threatening - not terminal. Many people are under the wrong impression that MAW is only for terminally ill kids and it isn't anymore - the more we educate the public, the better off all families who are supported by MAW will be treated.

Go...enjoy your trip! And please join us on the Wish Trippers thread, too! Lots of families over there know what you are going through.

 

[KPeveler]

MAW does not give trips to just anyone - if they selected you, then your family deserves it. You did not "take" anything else from everyone. This is a once in a lifetime experience and you should enjoy it all as a family. No one knows what tomorrow may bring, so take the trip and enjoy seeing your child's dream coming true.

To respond to posters who said they feel guilty or badly about "taking advantage" of their child's illness... Here is my take on it.

I have a genetic disease - I cannot get rid of it and I will never get better. It has made my life very complicated and I live every day in incredible pain. My wife and family have to watch me struggle and worry about the potentially life threatening complications that can arise from EDS.

Whenever I get something due to being sick or requiring a wheelchair, I call it my Silver Lining. When you figure out how much of life I miss out on due to being sick, and how little benefit I get from it, I figure it all evens out. Yes, there are times I get to ride Toy Story Mania more than once because no one else needs the wheelchair car. But I also have to watch my friends going on Screamin and Space Mountain because I am too sick to go. We call my handicap parking "Rock Star Parking." We have named my manual chair Tornado (after Zorro's horse) and my powerchair Doom Buggy. I get seated first in the Aladdin show and I always get the front row in TOT.

Is life fair? No, of course not. But just because you get one or two benefits from the illness does not make you a bad person or mean you are "taking advantage." I think when you look at the pain, worry, expense (emotional and monetary), and sleepless nights, you will find that you are definitely still in the "owed" column.

So enjoy the MAW trip (or even just a comfy seat for Fantasmic) and forget about the difficulty our lives include for a little while.

 

[bouncycat]

MAW does not give trips to just anyone - if they selected you, then your family deserves it. You did not "take" anything else from everyone. This is a once in a lifetime experience and you should enjoy it all as a family. No one knows what tomorrow may bring, so take the trip and enjoy seeing your child's dream coming true.

To respond to posters who said they feel guilty or badly about "taking advantage" of their child's illness... Here is my take on it.

I have a genetic disease - I cannot get rid of it and I will never get better. It has made my life very complicated and I live every day in incredible pain. My wife and family have to watch me struggle and worry about the potentially life threatening complications that can arise from EDS.

Whenever I get something due to being sick or requiring a wheelchair, I call it my Silver Lining. When you figure out how much of life I miss out on due to being sick, and how little benefit I get from it, I figure it all evens out. Yes, there are times I get to ride Toy Story Mania more than once because no one else needs the wheelchair car. But I also have to watch my friends going on Screamin and Space Mountain because I am too sick to go. We call my handicap parking "Rock Star Parking." We have named my manual chair Tornado (after Zorro's horse) and my powerchair Doom Buggy. I get seated first in the Aladdin show and I always get the front row in TOT.

Is life fair? No, of course not. But just because you get one or two benefits from the illness does not make you a bad person or mean you are "taking advantage." I think when you look at the pain, worry, expense (emotional and monetary), and sleepless nights, you will find that you are definitely still in the "owed" column.

So enjoy the MAW trip (or even just a comfy seat for Fantasmic) and forget about the difficulty our lives include for a little while.

OMG, you are my new hero!! I totally agree with you here, even tho I never thought about naming my chair!! I go thru similar things every day, the never ending pain, the good days, and the bad, and a spouse that has to do things, sometime everything for me. I have to have the front row in ToT, I'm just thankful that I can still ride that one, there are rides I can't do anymore.

To the MAW poster, HAVE FUN!!! That's an ORDER!! LOL If they ok'd you for this trip, enjoy it!! I see SOOOOO many people at WDW for MAW trips, with the buttons on, and it always breaks my heart. I'm an adult, but know what these kids go thru. Like KPeveler, I live it everyday. Don't feel guilty, just go with it, and ENJOY!!! to you, and your special child. I have a special child myself, and being in the condition I'm in doesn't help in raising him, but I wouldn't trade my life for anything!! Except maybe a normal working body!! I'd keep my special child tho!!!

 

[torge29]

Wow. You've are all incredible. Thanks for your responses I am feeling much better after reading your responses and researching MAW a bit more.

DD's Make A Wish team called last night and the DCL Western Caribbean has been approved for fall!! I WILL be joining the MAW Trippers thread and will make this a "once in a lifetime" vacation for the entire family!

 

[maroo]

Wow. You've are all incredible. Thanks for your responses I am feeling much better after reading your responses and researching MAW a bit more.

DD's Make A Wish team called last night and the DCL Western Caribbean has been approved for fall!! I WILL be joining the MAW Trippers thread and will make this a "once in a lifetime" vacation for the entire family!

Woo Hoo!!!

 

[buffettgirl]

Wow. You've are all incredible. Thanks for your responses I am feeling much better after reading your responses and researching MAW a bit more.

DD's Make A Wish team called last night and the DCL Western Caribbean has been approved for fall!! I WILL be joining the MAW Trippers thread and will make this a "once in a lifetime" vacation for the entire family!

I hope your daughter enjoys every minute of her special trip.

 

[Ms_Butterfly]

Make-A-Wish gives trips even to kids who haven't been sick for a while, so don't feel bad; they have enough to go around if they are giving to kids who are no longer terminal. (I know a pastor's family who felt guilty getting a Disney cruise from Make-A-Wish because their daughter had been cancer-free for a while already, and they told MAW to give the trip to somebody else, but MAW assured them it was fine and convinced them to take the trip. They had a wonderful time, by the way, so enjoy your trip!)

 

[dclfun]

I'm so glad to hear that your DD's wish was approved! My son had trouble accepting a wish as he was 20 and over the age for most of the wish organizations. Still, he was in end-stage renal failure and on dialysis with cardiac complications and I thought the trip would lift his spirits so I contacted an organization that offered wishes to kids below age 21 and he was accepted. Since we live close to WDW, his wish was to visit his sister in Boston and to see a Red Sox game. It was just what he needed at a time of great physical and emotional pain and although he originally thought wishes were for "little kids", I know he enjoyed his trip thoroughly. I think lots of people get confused as the original intent of MAW was to fulfill a child's last wish, but the definition for a child who qualifies is now very different. My son is 25 years old today, still waiting for a kidney transplant, getting straight A's taking 3-4 courses per semester and he still wears his "A Special Wish" t-shirt. I hope your dd also makes some wonderful memories and takes a break from the reality of dealing every day with medical issues that truly do impact the whole family.---Kathy

 

[ccgirl]

Good for you! I am so happy for you. As others have said, your child did not take a "wish" away from anyone else. As a mother that was lucky enough to have two healthy children; I am continually amazed at parents like you. When I am in line at WDW and people make snide comments about how they have to "wait in line" when others don't I very loudly say they should thank God they have the ability to wait in the line.

I am so very happy you were granted this wish. I wish you and your family all the best on the trip and in the future.