Am I in denial?

[javamom]

My youngest son was born with Congenital Heart Defects. He had a surgery when he was a week old to correct his aortic arch. He has valve defects and damage. He is doing really well!! Let's nothing stop him from doing the things that he loves.

But he's at that age where he's starting to not like the fact that he's smaller than his classmates, even the girls. His heart isn't something that we dwell upon, and I have never attempted getting him a GAC, or a Wish trip. He seems too healthy to need these things, and I would feel guilty if he used something that he doesn't need when there are kids out there that struggle so much more than he does.

But I wonder if I am kidding myself sometimes?

Not really sure what I am asking here, maybe I'm just thinking "out loud."

I am considering getting him a GAC when we go in June, as it will be really hot. Perhaps it'll make things easier for him, in general, and he won't be as tired out at the end of the day?

 

[rie'smom]

Definitely get the GAC card. The heat can cause problems for people without heart problems. The WISH trips I think are for those who are terminally ill.

 

[jbrnhrt]

I felt the same as you for a long time.My son has spina bifida and in his everyday life he generally does very well as long as he stays on track with therapies, checkl ups and medications. when we plan long days or big trips we make special accomidations such as using a strolle (and he's 6), or getting a gac, or stroller as wheelchair sticker. if he gets too tired he's miserable and he gets more tired than the average child. as far as make a wish, your child does not have to be terminally ill, but have a life threatening condition. like my son is expected to life a normal life span, but since complications can develop quickly we may lose him too young. i'm guessing it's similar with your son. we didn't think our son qualified, but he did, and now he gets to meet mickey mouse! the wish from maw does not have to be a trip either, it can be prety much anything he wants. if you're interested check out teir website www.wish.com. but if getting a gac will mean a better trip then i say do it, that's what it's there for! hope that helps

 

[Happy_dreams]

Definitely get the GAC card. The heat can cause problems for people without heart problems. The WISH trips I think are for those who are terminally ill.

It is a VERY common misconception that MAW kids are terminally ill. Ofcourse , there are some that are actually terminal but most are not and ALOT live on to be happy, healthy adults. MAW is just there to help them heal with the joy it brings to the child or teenager. You can apply fo rhim whenever you want, and it if he is eligible, then you should consider it a blessing after the surgery he's been through.

As for teh GAC, I adivce you to get one as it accomodates the person very well according to their needs. This does not mean shorter line period, but a more comfortable line experience for those who cannot tolerate auch lines. (heart problems, autism, and any disability(visible or invisible)). Have fun on you trip to Disney and remember that there are First aid stations in the parks(both disneyland and disneyworld) and they provide care there to even the smallest thing.

 

[rie'smom]

It is a VERY common misconception that MAW kids are terminally ill. Ofcourse , there are some that are actually terminal but most are not and ALOT live on to be happy, healthy adults. MAW is just there to help them heal with the joy it brings to the child or teenager. You can apply fo rhim whenever you want, and it if he is eligible, then you should consider it a blessing after the surgery he's been through.

As for teh GAC, I adivce you to get one as it accomodates the person very well according to their needs. This does not mean shorter line period, but a more comfortable line experience for those who cannot tolerate auch lines. (heart problems, autism, and any disability(visible or invisible)). Have fun on you trip to Disney and remember that there are First aid stations in the parks(both disneyland and disneyworld) and they provide care there to even the smallest thing.

Thanks to you and the previous poster for pointing this out to me. Just goes to show that even after going to WDW for 38 years I'm still learning!

 

[Happy_dreams]

Thanks to you and the previous poster for pointing this out to me. Just goes to show that even after going to WDW for 38 years I'm still learning!

You are very welcome! So did you consider reffering him?

 

[blessedmom4]

I am considering getting him a GAC when we go in June, as it will be really hot. Perhaps it'll make things easier for him, in general, and he won't be as tired out at the end of the day?

Another CHD Mom here. Your son absolutely deserves a GAC, especially if it would make his Disney experience better and he has unmet needs. That is why it is there, to make the Disney experience easier for everyone to enjoy. We utilize the first aid stations frequently, especially on hot days. Of course, you don't need a GAC for that.

As for MAW…your son and family have been through a lot, Open Heart (OH) surgery at any age is not easy. (Our daughter has had three and many more in her future). While some OH surgeries might be “simple” repairs such as closing a hole, others are exceptionally complex and will require a lifetime of vigilance and care…I know this from firsthand experience. Never think someone else’s walk is easier or harder than you own…it is simply different, with its own set of challenges. There is no harm in discovering if your child is eligible for a MAW experience and I encourage you to explore this if it is something you want for your child to be a part of.

Best wishes to you and your family.

 

[SueM in MN]

There is more information about GACs (Guest Assistance Cards) in post #6 of the disABILITIES FAQs thread. You can find that thread near the top of this board or follow the link in my signature.
You will need to be able to explain his needs when you go to Guest Relations to request a GAC. Because each person’s needs are different (even if they have the very same diagnosis), GACs are based on needs rather than diagnosis.

For things like avoiding heat, there are some places that have no way to provide a cooler place to wait (for example, many of the AK and MK attractions are outside and it is hot where ever you are). So, you do have to plan for how you will deal with heat outside of attractions.
Also, if someone has problems with walking, a GAC won’t shorten the distance you walk in line - and some lines are very long. For example, the lines for Soarin’ and for the Safari are over 1/4 mile just to get from the line entrance to the boarding area.

Many people have been very pleased with using tour planning services like Tour Guide Mike to help minimize their touring time. TourGuide Mike helps you to know where the least busy places are so that you can be there.

And, if you have not visited the Wish Tripper’s thread on this board, you may want to. Make a Wish was at one time almost only for children with terminal illnesses (that was way back in the last century when I was in Nursing School
But, many conditions like certain heart defects or childhood cancers that were almost always terminal in the past have changed into survivable conditions. MAW changed their guidelines to being for children with “life threatening” conditions, which may include children with terminal illnesses, but also includes children with chronic illnesses or cured conditions. Many kids are celebrating completing therapy, getting thru another surgery or just being healthy enough for a while to make a trip.

 

[SandalwoodMomof3]

I would like this to bump up...I am going on a Wish trip with my son, and most people who know him now (we moved to our new home right after his pacemaker was implanted) don't even realize he has a medical condition, much less chronic heart failure and an upcoming open heart surgery, and a number of well-meaning people have wondered why AJ gets a trip when he's not dying...

 

[I Love Pluto]

Chronically ill fits the need for a Wish trip. Your little one is enduring more than some children his age will ever see in their lifetime.

Give your little guy a hug from me, take him to WDW, and shed the guilt. You have nothing to feel guilty about - nothing at all. Like any parent - you want the best for your child. He's been through a lot! You have been through a tremendous amount of stress. Relax!

Have a GREAT TRIP!!!!!

 

[SandalwoodMomof3]

Chronically ill fits the need for a Wish trip. Your little one is enduring more than some children his age will ever see in their lifetime.

Give your little guy a hug from me, take him to WDW, and shed the guilt. You have nothing to feel guilty about - nothing at all. Like any parent - you want the best for your child. He's been through a lot! You have been through a tremendous amount of stress. Relax!

Have a GREAT TRIP!!!!!

Thanks for saying the exact words I needed to hear

 

[Tonka's Skipper]

My youngest son was born with Congenital Heart Defects. He had a surgery when he was a week old to correct his aortic arch. He has valve defects and damage. He is doing really well!! Let's nothing stop him from doing the things that he loves.

But he's at that age where he's starting to not like the fact that he's smaller than his classmates, even the girls. His heart isn't something that we dwell upon, and I have never attempted getting him a GAC, or a Wish trip. He seems too healthy to need these things, and I would feel guilty if he used something that he doesn't need when there are kids out there that struggle so much more than he does.

But I wonder if I am kidding myself sometimes?

Not really sure what I am asking here, maybe I'm just thinking "out loud."

I am considering getting him a GAC when we go in June, as it will be really hot. Perhaps it'll make things easier for him, in general, and he won't be as tired out at the end of the day?

Now I have a different take...as a guy...........ok an now old guy.......from what you posted is hreat is not causing him problem now, and he does what he wants to do. yet his size is cuasing him concern?.......hes starting to know he has a health issue...

Maybe it's better not to get a GAC or MAW.. these will only point out that he is different and has a health issue?........I think maybe he just needs to do his own thing as they say.....do what he can and learn to accept it. You know the male *EGO* is easyly bruised!


just another Males* opinion.

Whatever you do...........have agreat vacation......seems with your help.he will do fine!


AKK

 

[DopeyDame]

I don't usually post here, but I was born with a congenital heart defect, so this jumped out at me.
First, you're probably not in denial! They can do amazing things with little hearts these days, so with any luck at all, your son will live a long, healthy, happy life. (I'm a mom, engineer, and even did the Disney half marathon (mostly walked!) a few years ago. I still see my cardiologist, but most of the time my heart never crosses my mind. Check out achaheart.org if you want some BTDT perspectives from adults with CHDs)

I'm a woman, but as someone with a CHD, I'm sort of with Tonka's Skipper. I don't know how old your son is, but when I was a tween (and up) I would have been MORTIFIED if my parents had given me a wish trip or gotten me a GAC. Yup, there were times when the family had to sit down in the shade while I rested for a little bit. Yup, I probably qualified for a WISH trip. But I wanted nothing more in the whole world than to be 'normal' and to just live my life without people drawing attention to my heart issues. One of the things I love now as an adult is that most of the people I interact with don't know anything about my heart issues, so I can share or not as I see fit.

Obviously, each kid is different, but before you do a GAC or wish trip, talk to your son and see how he wants to handle it. Your family just taking breaks or staying in the A/C a little longer here and there may be the best way to handle it.

ETA: I just saw that DS is 6. In that case, he'll probably LOVE the attention that a wish trip gives him. Do it now before you get full-on eye rolls and "mooooooommmmmm! STOP BABYING ME!" in just a few years ;-)

 

[Grumpy6264]

Get him a GAC. Our 12yo daughter has a CHD. She has had three open heart surgeries, the first at 3 days old and the last at about 2 1/2 years old.

The heat can be brutal on CHD patients. We get her a card every time we go and it really helps. She doesn't mind that we get her a card. I think she realizes that it makes things so much easier.

As far as the MAW trip. If you feel that it would be good for him, I say go for it. We have not done one for our daughter, but I know people who have.