Had to Cancel DD Wish trip

[tigger2on]

We have been waiting for a wish trip since 2000 for disabled DD. Now that they are planning on sending us this fall, I have to cancel it. I am pregnant and there is no way I could handle lifting her on and off of rides, and into swimming pools at 5-6 months pregnant!
It is disappointing especially since we have been told that we'd have to reapply for another wish and go back on the waiting list. DD is severely brain injured, non-verbal, non-mobile and 100% dependent but is considered chronic not life-threatening..... therefore she doesn't qualify at most places for a wish.
Anyway, at least we have the baby to look forward too!
Suzanne

 

[rjmom]

Have you tried asking your wish organization if you could take with a "caregiver" If you explain your situation, then they very well might comply. That way you could still go and you'd have someone who can assist your child as needed.

 

[mommie2angels]

Suzanne, congratulations on your new baby!!! I hope that your pregnancy is going great!

Why do you have to reapply for her wish? I am not familiar with anyone having to do that. It sounds obvious that her eligibility for a wish is not going to change.

Great idea rjmom! Do you have someone that could go with you to help lift her? That way you could still go.

 

[Anne MN]

I was told that if we had to, we could postpone the trip-

this is thru make a wish-

if that is who you are going thru- contact them and talk to them and explain the situation- they might have some options or ideas that you did not think of

 

[scrapperjill]

I agree with what many have mentioned before....explain to the wish foundation your reasoning behind putting the trip off....and see if you can have a caregiver go along... Is it just you and your dd going. If so it would be hard for them to not understand your reasoning.

We had to postpone our wish trip...we were going to go this past spring....then put if off until early this fall. But you know things happen...and with all the wish kids they (the wish foundation) have done wishes for..should be use to things comming up and trips being postponed.

Best of luck...and congratulation on you pregnancy...and your dd wish being granted.

 

[3DisneyNUTS]

could you tell me what wish agency you applied for. There is a brain injury list that I am on and they have had problems finding an org that will grant wishes to their children. Thanks so much

 

[dclfun]

Suzanne- I also want to chime in and say "congratulations!". You will have your hands full, but they will be full of love. As for your daughter's wish, I don't want you to take this the wrong way, but since she doesn't qualify under most of the organizations since she doesn't have a life threatening illness, at least you know that there's not the urgency that some parents may have, thinking that perhaps their child might not survive for a wish in the future. Besides, you will have another child to enjoy sharing the time with when the wish does happen.
It seems as though there are so many more organizations than the original "make a wish" granting wishes. Most people think that wishes are for children having truly a last wish at the end stages of their lives, however many ( and I know lots) of these children getting wishes will live well into adulthood and are fully recovered. It almost seems unfair that someone with a severly disabled child wouldn't qualify since it's so life-altering for the entire family to care for someone who is totally dependent.
I will never donate to MAW again after the incident a few years ago where they granted a teen a wish to hunt and kill a bear. By the way that teen is now an adult. To allow someone the wish to kill another living being to me is horribly wrong. I don't know which organizations I would support since it's hard to figure out what their criteria are and how much of their budget goes to pay for their staff, etc.
At this point we try to give "wishes" to other adults with ALS whose children have suffered immensely due to loss of parental income or just by watching their parent deteriorate. We've used our DVC points and some extra passes saved over the years twice now for a four night stay for these families at Old Key West. Unfortunately both the families have lost a father this past year but seeing the joy of someone having a bit of a respite in the midst of such a trial makes me know the value of a "wish" come true. ---Kathy

 

[The Adams Family]

i am totally sorry you feel that way about MAW but if it was not for make a wish my daughter would not be taking a cruise in a few weeks. She has gone through 8 brain/neck/spine surgeries in the last 18 months. She also has one of the rarest forms of dwarfism in the world. There is no way with all the medical expenses that we would ever be able to take our family of 6 on a disney cruise. Granted all of her conditions are considered life threatening but she has been doing very well the last few months. We have been told that her condition has a shorten life expectancy but i have been lucky to meet a woman that is in her 60's that has the same thing but I have sadly have known many kids that have died very young. No one can predict when a child will die from any type of illness, it is God's decision when to take us. I am just greatful that there is such an organization out there that will help us see our daughter smile for a week and not to see her worry when the next trip to the hospital will be.

Take Care
Jill

 

[dclfun]

Jill- I would feel negatively about any organization that granted a wish to someone to kill another living being. ---Kathy

 

[The Adams Family]

i guess i see nothing wrong with this because i am a hunter. so are my kids. we use our venison as our main meat to help save us on the grocery bill. but i understand that some people do not believe in hunting and i do respect that. i guess i was just trying to say that it is a great foundation and because we may not agree with all the wishes granted we should not give up on them for there are many kids out there that need to smile and laugh.

take care
jill

 

[dclfun]

Jill- I can certainly understand anyone who hunts and then eats/uses the meat, but this boy wanted to just kill a bear. They sent him to Alaska on his "wish" with a trained hunter and he hiked through the wilderness with his rifle...that isn't a wish I would ever support- to take a life of a living being just for sport. Maybe he needed to see "Brother Bear"! I don't disagree at all with the wishes granted...it just seems sometimes like more children could be included who have chronic, life-altering disabilities. For example if someone has a severely disabled child, if not for the excellent care they receive by their families, their life could be in jeopardy too. I love hearing about everyone's wishes and we've enjoyed immensely the opportunity to give even a tiny wish to terminally ill adults and their families. It's a great time of bonding and joy. ---Kathy

 

[3DisneyNUTS]

Originally posted by dclfun
Jill- I can certainly understand anyone who hunts and then eats/uses the meat, but this boy wanted to just kill a bear. They sent him to Alaska on his "wish" with a trained hunter and he hiked through the wilderness with his rifle...that isn't a wish I would ever support- to take a life of a living being just for sport. Maybe he needed to see "Brother Bear"! I don't disagree at all with the wishes granted...it just seems sometimes like more children could be included who have chronic, life-altering disabilities. For example if someone has a severely disabled child, if not for the excellent care they receive by their families, their life could be in jeopardy too. I love hearing about everyone's wishes and we've enjoyed immensely the opportunity to give even a tiny wish to terminally ill adults and their families. It's a great time of bonding and joy. ---Kathy

While I have no problem with the wish I do have the problem of the age requiremnet. My son's diagnosis left him with a prognosis of being completely disabled and not having the ability to speak. While he beat the odds many with his condition have not and because these children do not have the required congnitive age level of a 3 year old and connot speak their wish They do not qualify for MAW although their condition shortens their life span considerable. SOme children pass away by age one and some live till their late teens with all ages in between passing away. So it is sad that MAW does not help these families make happy memories with their children/family.

This why I am interested in the OP's organization so I can refer families to them. If anyone knows of the organization please let me know. It would be a type that grants wishes to families where the child cannot express their wish. Thansk

 

[The Adams Family]

kathy i would have to agree with you on the disabled child thing...we have a set of twins in town that have downs and i know that their family has sacraficed so much for these girls. i know these girls live a hard life especially in school where kids can be so mean. if there was anyone i could think of that deserved a trip it would be them. their father died in a car wreck about 3 years ago and the mother works 3rd shift so the kids have her around during the waking hours.

there use to be a wish org that made wishes to kids with disabilities but i have not heard about them for years. as of 2 years ago i do not think my daughter Autumn would have qualified for a wish herself. but in the last 2 years she has had 8 major brain/neck/spinal surgeries. we just pray that there with be no more. during her last surgery she told me that if they need to put her on the machines again that she did not want them and to let her go to heaven. she said she could no longer handle the pain and just wanted to be free from it all. but we were lucky. it seems the last surgery is working and her pain has been reduced to a point that she is not living on pain meds. it is so hard to see any child suffer.

Jill

 

[meeshi]

Originally posted by 3DisneyNUTS
While I have no problem with the wish I do have the problem of the age requiremnet. My son's diagnosis left him with a prognosis of being completely disabled and not having the ability to speak. While he beat the odds many with his condition have not and because these children do not have the required congnitive age level of a 3 year old and connot speak their wish They do not qualify for MAW although their condition shortens their life span considerable. SOme children pass away by age one and some live till their late teens with all ages in between passing away. So it is sad that MAW does not help these families make happy memories with their children/family.

This why I am interested in the OP's organization so I can refer families to them. If anyone knows of the organization please let me know. It would be a type that grants wishes to families where the child cannot express their wish. Thansk

First of all, Suzanne, congratulations on your pregancy!! Secondly, like rjmom suggest, maybe you could bring a caretaker with you. I hope things work out and your dd isn't too disappointed if you need to postpone her trip.


3DisneyNUTS...my daughter was granted a wish in 2001 (as you can see by my signature pic). She is non-verbal and when the MAW volunteer came to see what her wish would be she asked me what I thought she would want.

 

[3DisneyNUTS]

Originally posted by meeshi
First of all, Suzanne, congratulations on your pregancy!! Secondly, like rjmom suggest, maybe you could bring a caretaker with you. I hope things work out and your dd isn't too disappointed if you need to postpone her trip.


3DisneyNUTS...my daughter was granted a wish in 2001 (as you can see by my signature pic). She is non-verbal and when the MAW volunteer came to see what her wish would be she asked me what I thought she would want.

REALLY?????? I wonder why the people in my loop are having such a hard time. Many of their kids have been denied because the child cannot make their wish known. I am going to pass this on to them.

Was it a hard time getting the rep to the house?

 

[meeshi]

Originally posted by 3DisneyNUTS
REALLY?????? I wonder why the people in my loop are having such a hard time. Many of their kids have been denied because the child cannot make their wish known. I am going to pass this on to them.

Was it a hard time getting the rep to the house?

Not at all. My dd's physical therapist asked us if we would mind if she recommended dd for a wish. I can't remember how fast things moved, but I do remember thinking, "Wow, this is happening so fast". I would say within a month she was recommeded, granted and the wish coordinator came for the initial visit. I can't remember exactly, but it wasn't very long at all.

I'm not sure why they're having a hard time either. Obviously dd's PT knew she's non-verbal (she also does a lot of volunteer work for MAW) so it must not be an issue.

 

[3DisneyNUTS]

well thanks for the info I am going to mention it to everyone and see if maybe things have gotten easier to apply for...I hope so. I am so glad you guys had a great trip