Make a Wish (and other organizations) - Wish Trippers UNITE! Volume THREE! :)

[alizesmom]

Sharing a picture of Tinkerbell Ciara.

 

[maroo]

Hi Melissa,
Thanks so much for your note! I will be checking out a lot of the pages and links...as time permits with the kiddos!! I'm with you on not really wanting the family to split up, but we might have to at times, like when we go to the ice cream shop or whatnot. Noah can have "keto ice cream", but just not sure he'll want to when he sees all the other options the others can have. He is a rockstar usually and, at four, has handled this EXTREMELY well. But if there's something yummy dangling in front of him that he can't have, I am sure he will be sad.

I cannot say enough good things about the keto diet, though I also curse it every day! It is a TON of work, but it has given us our son back! (He was in the hospital for a month and a half this summer, essentially in non-convulsive status several times, just fading before our eyes) We had originally planned a family trip to Disney which was cancelled when he took such a bad turn this summer. We are SO excited for this trip, but I am just a bit nervous too! He's clinically seizure free right now and I just don't want to screw it up and wake up the seizure beast!

Does anybody have any suggestions about bringing "help" along or not...in the form of a grandmother and an aunt? My mom and sister were planning on going on the original trip, so they might book their own trips down there during our time to help with the adult/kid ratio. Is it easy for folks who are staying out of GKTW to spend time inside with us? Thoughts on whether this is encouraged or frowned upon? Thoughts on where they should stay if they do come?

Thanks, in advance. I LOVE seeing pictures of all your beautiful children!!!

I went as an official part of Lauren's wish. I went as Lauren's CNA. They would ordinarily not approve an adult if there are two parents going and not a bunch of kids, but Lauren's Dad is a severe diabetic and Lauren's little bro has his own set of medical issues. They don't travel anywhere without someone else (usually me) because it is just too hard. MAW took that into account and allowed me to go.

I have seen several families be able to take one adult as an additional caregiver (they were all certified as a medical caretaker, from what I understand), but it is an individual thing.

But I have seen several families bring an extra person on their own dime. GKTW normally lets them stay in the villa...but that may change at any point. If they are allowed to stay at GKTW, they are normally able to purchase meal tickets for very little money and can eat with the family.

Of course, it would be up to the family to get them there (airfare) and purchase tickets to all of the parks (which can be quite expensive).

First of all, welcome! My mil/fil are both coming with us. We feel very strongly that we need another adult who can drive should something happen to Ali while we are down there. It might sound a little over the top, but if she gets sick and needs antibiotics, or if Florida is in the midst of a premature heat wave, she will need to be admitted. My non-wish child would be positively devastated if this happened and "ruined" the trip for her. They have the financial resources to pay for themselves, and since they are retired, they also have the time.

I have heard through the grapevine that GKTW's villas do accommodate seven, so I'm hopeful that they will be able to stay with us even though they are not officially included as part of Ali's wish. I know that they will be more than happy to make a donation to GKTW in appreciation of this. Hopefully someone else can answer your question a little more thoroughly - I'm interested in learning more as well!



Thanks! Unfortunately, it's a no go with Gabe. I have a feeling we might have been more successful had his social worker been more helpful, but that wasn't the case. We are paying OOP for him, with which my inlaws are helping us. And, he's signed up for GAD/GAD, so we're confident we'll make it work!

I am so glad Gabe will be able to get that extra ticket! That is great news...that really should help you guys.

I totally get the extra adult thing...it was nice when Lauren got so sick...for me to be able to take her back to the room and let William stay out with both of his parents - even though he is not the wish child, he deserved the trip as much as Lauren did for all he has to deal with each day.

Sharing a picture of Tinkerbell Ciara.

Oh my gosh...she is beautiful!!!! I hope you will share some more pics of you guys - as you can. Maybe not a whole TR....but some tidbits!

 

[noahsketomom]

But I have seen several families bring an extra person on their own dime. GKTW normally lets them stay in the villa...but that may change at any point. If they are allowed to stay at GKTW, they are normally able to purchase meal tickets for very little money and can eat with the family.

Of course, it would be up to the family to get them there (airfare) and purchase tickets to all of the parks (which can be quite expensive).

I totally get the extra adult thing...it was nice when Lauren got so sick...for me to be able to take her back to the room and let William stay out with both of his parents - even though he is not the wish child, he deserved the trip as much as Lauren did for all he has to deal with each day.

OK, totally not sure I'm quoting properly, but yes, they were planning on paying their own way down. I spoke with MAW about it, and we have 4 kids, so if both my sister and my mom go, we would be at eight (too much for the villa). So they are trying to work it out themselves as to whether they both go, or just one.

The more hands to help with kiddos the better typically, but especially in the event of illness or fatigue (Noah gets both pretty often) but I was just concerned that GKTW would frown upon too many helpers! I'm glad to hear that they can buy meal tickets and that other folks bring non-medical helpers.

I love the tinkerbell pic!!!!

 

[casper_jj11]

Hi everyone. I'm a newbie to the Wish board but not disboards. We've been to WDW four times now and the kiddos keep asking when we're going back. DD was diagnosed with neuroblastoma (cancer in her adrenal gland) a week after her first bday. She had surgery to remove the adrenal gland at 13mo. We're so lucky it was caught early and she's been in remission ever since. She's been granted a wish through the Children's Wish Foundation and we've been waiting til she's old enough for her to really have a say in her wish. She turned 4 this past Monday and she's been asking to go back to WDW for the past few months so I contacted the foundation this past week to start the ball rolling. We figure August 2010. I have a few questions though. The wish trip would be 7days long. There are several options including land/sea or WDW/US/SW or alternatively, Busch Gardens in place of US since I'm a bit concerned she's too young to enjoy much of US. Its so far for us to travel that we'd like to extend the trip for a few days... or up to a week. The foundation doesn't really recommend it but has said some wish children have extended the trip but we'd need to change the flight tickets ourselves at the airport. We've been told that we can stay at GKTW or a disney hotel. I'm leaning towards the Disney hotel but I've got so many questions and I've tried to find answers on the board but there's so much info.

For those that have extended their wish trips, how does it work with respect to park tickets? How about rental car? What about flights? And hotels... if we choose Disney hotel can we just extend our stay? Has anyone had the dining plan at Disney or is it all OOP? I don't think we'd like the sea portion so if we do just land, are we better off requesting a 5d WDW pass and paying extra for the other parks? Is the pass only good for the 7d wish trip or is it good for the normal 10d? I think I"ve read that we can't extend the park tickets... is this right? And what about passes for SW or other parks... do they need to be used during the 7d wish trip or could they be used after? ... I"m just thinking that it would be hard to extend the trip by a week but no see a Disney park again after the first 7 days... the kids would surely want to go back ... can we do that?

Also, how does a GAC card work for wish children... is it for wheelchairs only ... do all wish children get one or is it dependant on abilities ... and if DD doesn't get one (no physical limitations right now), how does it work as far as access to the rides and lines is concerned?

I'm a true planner at heart and have used TGM for all our trips but a wish trip is a whole other story... any help would be really appreciated!

 

[maroo]

Hi everyone. I'm a newbie to the Wish board but not disboards. We've been to WDW four times now and the kiddos keep asking when we're going back. DD was diagnosed with neuroblastoma (cancer in her adrenal gland) a week after her first bday. She had surgery to remove the adrenal gland at 13mo. We're so lucky it was caught early and she's been in remission ever since. She's been granted a wish through the Children's Wish Foundation and we've been waiting til she's old enough for her to really have a say in her wish. She turned 4 this past Monday and she's been asking to go back to WDW for the past few months so I contacted the foundation this past week to start the ball rolling. We figure August 2010. I have a few questions though. The wish trip would be 7days long. There are several options including land/sea or WDW/US/SW or alternatively, Busch Gardens in place of US since I'm a bit concerned she's too young to enjoy much of US. Its so far for us to travel that we'd like to extend the trip for a few days... or up to a week. The foundation doesn't really recommend it but has said some wish children have extended the trip but we'd need to change the flight tickets ourselves at the airport. We've been told that we can stay at GKTW or a disney hotel. I'm leaning towards the Disney hotel but I've got so many questions and I've tried to find answers on the board but there's so much info.

Do you know if choosing a Disney hotel would negate the GKTW "sponsoring" of the trip?

I LOVE GKTW - and regardless of the pictures you see and even the stories on here...BEING there...it is such a magical place. A trip all by itself. And their activities are fun, too! It adds a lot to the trip and makes it "different" than other trips to stay there.

For those that have extended their wish trips, how does it work with respect to park tickets? How about rental car? What about flights? And hotels... if we choose Disney hotel can we just extend our stay? Has anyone had the dining plan at Disney or is it all OOP?

Everything is out of pocket after your stay that is sponsored by the wish organization. Each one is different as far as extending...which ones allow it and which don't.

Many will allow you to move the return flight so that you don't incur any extra expense in flying to add to your trip - which helps with the cost. But then you are on your own for car, hotel, tickets.

You can either stretch the tickets you get from GKTW out (assuming you stay at GKTW) - which is a 3 Day PH to Disney, 2 days at US (and they treat you like royalty) and 1 day at Sea World. With all there is to do at GKTW - you can easily spend a couple of days there hanging out, relaxing by the pools, playing games, etc and they have lots of activities.

If you decide you need more Disney days, you will have to "start over" on the tickets...spending the most for Day 1...you can't add to a GKTW ticket because it is complimentary.

I don't think we'd like the sea portion so if we do just land, are we better off requesting a 5d WDW pass and paying extra for the other parks? Is the pass only good for the 7d wish trip or is it good for the normal 10d? I think I"ve read that we can't extend the park tickets... is this right?

I don't know anyone that has been able to add to the park tickets. We wanted to and were told we could not since they were complimentary tickets. They have no "value" to add to...if that makes sense.

And what about passes for SW or other parks... do they need to be used during the 7d wish trip or could they be used after? ... I"m just thinking that it would be hard to extend the trip by a week but no see a Disney park again after the first 7 days... the kids would surely want to go back ... can we do that?

The Sea World and Universal tickets are good for 14 days - someone even said they used the Sea World ticket at another Sea World after they got back.

One way to do this is to do the extra stuff GKTW offers...they have tickets to lots of parks and activities (plane rides and other cool stuff) and you could do a lot of those things during your GKTW week - and maybe a Day at Disney thrown in...then use the last 2 days and the other tickets during the 2nd half of your trip?

Also, how does a GAC card work for wish children... is it for wheelchairs only ... do all wish children get one or is it dependant on abilities ... and if DD doesn't get one (no physical limitations right now), how does it work as far as access to the rides and lines is concerned?

All wish kids get the same GAC and button, regardless of visible physical disabilities. Since they all have life threatening illnesses, GKTW treats them all the same in that regard. You will have the same access as any of the wish trip reports you find here where the kids have stayed at GKTW or through GKTW.

However...they are DATED...so you could run into a problem trying to use them after your trip dates...but it isn't likely.

I'm a true planner at heart and have used TGM for all our trips but a wish trip is a whole other story... any help would be really appreciated!

We would be glad to help you! You can ask questions here or feel free to start a pretrip report and we can follow you individually. Either way!

to the wish trippers thread! I know it is "club" you never wanted to belong to, but welcome!

 

[casper_jj11]

Thanks so much for the info!

Our wish coordinator didn't say anything about negating GKTW. I actually don't have much info yet just that we'd have our choice of GKTW or a disney hotel.

I guess I should have broken up a few of those questions. When I asked about OOP I was wondering if wish groups used the dining plan if staying at a disney resort or if meals were OOP. I wasn't so much wondering about the expense of extending the trip. I fully expect to pay it all OOP. I'm wondering how people who have extended the trip have been able to do so with respect to car rentals, air tickets, and park tickets.... did you do it beforehand, once you were there, did the contract for rental start over, did you have to return to the airport to do it, etc.

Thank so much about the info for GAC. I had no idea. Same with the info for the park tickets. You mentioned a bunch of other activities that come with GKTW... are they automatic or do you need to prebook those... is there a place I could find information on them? I've been hesitant to stay there... not quite sure why. We have three kiddos.... DS2, DS7 and our wish kiddos DD4 ... i just figured it would be easier for us and more enjoyable for them to be immersed in Disney and stay on site...

If we were to use the Disney tix for the extended portion of the trip, would DD still get the special treatment?? I really want her to feel like a princess on this trip. We've been there before but this is special and I want her to experience all the fantasy that a wish trip can provide...

 

[camarks1234]

Just read that Gabe will get to go! Yeah! I know you're having to pay OOP which stinks. Too bad that SW couldn't have said the right things. Sometimes people just don't get it.

 

[maroo]

Thanks so much for the info!

Our wish coordinator didn't say anything about negating GKTW. I actually don't have much info yet just that we'd have our choice of GKTW or a disney hotel.

I guess I should have broken up a few of those questions. When I asked about OOP I was wondering if wish groups used the dining plan if staying at a disney resort or if meals were OOP. I wasn't so much wondering about the expense of extending the trip. I fully expect to pay it all OOP. I'm wondering how people who have extended the trip have been able to do so with respect to car rentals, air tickets, and park tickets.... did you do it beforehand, once you were there, did the contract for rental start over, did you have to return to the airport to do it, etc.

Thank so much about the info for GAC. I had no idea. Same with the info for the park tickets. You mentioned a bunch of other activities that come with GKTW... are they automatic or do you need to prebook those... is there a place I could find information on them? I've been hesitant to stay there... not quite sure why. We have three kiddos.... DS2, DS7 and our wish kiddos DD4 ... i just figured it would be easier for us and more enjoyable for them to be immersed in Disney and stay on site...

If we were to use the Disney tix for the extended portion of the trip, would DD still get the special treatment?? I really want her to feel like a princess on this trip. We've been there before but this is special and I want her to experience all the fantasy that a wish trip can provide...

I think there may be two different trip options...well...I guess three...and I am not sure which ones you guys actually have as options.

1. Stay at GKTW, meals are covered there plus you get spending money for some meals (varies by organization as to how much).

2. Stay at a Disney hotel but sponsored by GKTW - then you check in at GKTW, have access to their activities and food, but you get a spending check to cover some meals, too.

3. Stay in a Disney hotel and not have anything sponsored by GKTW.

For some organizations, it is either 1 or 3...not sure about yours.


I so highly recommend doing a trip at GKTW.

Here is the web address....

www.gktw.org

But even the pictures don't do the place justice.

Most activities there don't require any reservation at all - you just have the freedom to participate whenever they are offered.

They have parties each night of the week...these include...

Christmas - complete with a special meal, activities for the kids, pictures with Santa, snow (FL style), and each child gets to pick a gift

Pirate and Princess Party, Candyland Party, Birthday Party...these are all on different nights. Some appeal more to younger kids...some to older.

They also have things that appeal to older kids...like an arcade, pool table, swimming, putt putt (it really is a good course). And everything is free at GKTW...no quarters needed.

There are a few things that require reservations, but you don't reserve them until you get there...

One is the plane ride...which I believe is reserved only for kids staying at GKTW...they take you in a plane over the Disney Property. This is a new thing...not sure if it is on the website and I don't know that we have had many wish families do it yet...


They also have extra tickets to things like...Space Center, Gatorland, water parks, etc...More than you could fit in 7 days, I believe.

You also get discounts (50% off for some things and the wish child is free) to some Dinner shows (Pirate Dinner Show and some others).


For a family that goes to Disney fairly often...I really recommend doing the special GKTW trip. It is very Disney-ish at GKTW. I don't know how to explain it, really.

ETA: Oh...the ICE CREAM! I forgot about the ice cream shop. Open from morning through night. Kids are encouraged to have ice cream for breakfast, lunch and dinner - if they want. All free. And they make GREAT banana splits!

 

[maroo]

I am going to post this link...so you can get to the "inside" of the GKTW website that talks about the activities and such they offer...

BUT....

This is a total SPOILER...so...if you want some surprises...don't click here. Instead...just forget you saw this post at all... Move along now. Move along.

And make sure your kids are not watching over your shoulder if you want them to be surprised...and the schedules can change.


SPOILER ALERT!

GKTW Family Information


OTHER Attractions that Give Kids the World offers for FREE to GKTW guests - Besides the main parks.

Weekly GKTW Entertainment Schedule - SUBJECT TO CHANGE.


I wish there was a better collection of pictures of GKTW...I am going to work on finding something that shows more of GKTW in pictures...I will be back.

 

[Wee Annie]

Joanne,

whether you decide to stay at GKTW or at WDW is definitely a decision for you to make re personal preferences of your family. I can't give you the benefit of our experience, but I can tell you why we told them we wanted to stay at GKTW (going on 4/17). We are blessed to have some resources, and have been to WDW with our older children before. ALthough my wish kid's medical bills are staggering (even after insurance), we may be able to return some day on our own expense. But we will never be able to stay at GKTW again (I hope, because I certainly don't want any of my other children ever to qualify!). I want to really envelop ourselves in the wish trip -- be surrounded with people who "get it." Who understand what it's like to live with a child who has a potentially terminal illness. And I desperately want my older girls to be surrounded by other siblings who have been through similar experiences. They have suffered as much as my wish kid, just in a different way, and one that is not always recognized and supported by society. Finally, I want my wish child (3 -- has leukemia) to experience unconditional acceptance and support in this wonderful environment, in the midst of other children who are also battling (or have battled) their own medical demons.

I guess I just want us to be surrounded by our wish experience, and can think of no better way to do so than at GKTW. That being said, of course WDW lodging would be so much more convenient for visits to those parks. And the WDW experience, as you know, is magical itself. So the choice is really personal.

I'm sure your trip will be magical no matter what you choose!

Ann

 

[maroo]

http://www.youtube.com/user/GiveKidsTheWorld

GIVE KIDS THE WORLD YOU TUBE CHANNEL!


Check out this channel! GKTW has lots of videos on there!

Check out the Siemen's Movie on there, too. Features our very own Melia!

ETA:

AND Jozlynn! The Wish Flight 2009 Video!

 

[casper_jj11]

Thanks Ann and Maroo

I'm pretty sure I know my reasons for not wanting to stay at GKTW... its the same reason I feel kind of strange contacting the wish foundation to finalize things.... we were really really lucky. DD was diagnosed at 12mo and had surgery at 13mo. She never needed chemo or radiation. She had MRI's and CTscans every 3 months for a year (under anesthetic for all) and then has been back to oncology every 6mo for follow up since. We had a huge scare last fall when her catecholomines came back seriuosly elevated... it ended up being lab error but it was the worst month of my life (they wanted to wait a month before rerunning the tests). We are so very lucky. Most children with this type of cancer just don't survive. DD thinks its normal to being going to the children's hospital as often as she does and doesn't really remember the surgery or the fear because she was so young. She just knows she has tiny scars on her belly where she was made well again. Even her older brother is only now able to somewhat understand what cancer is.... she deserves this trip and I know that with all my heart but she doesn't remember why... she doesn't remember what she's been through... and that's a wonderful thing but it makes me feel different somehow from many of the other families

 

[casper_jj11]

Hi Maroo

Just saw the you tube links. I can't watch them at the office but I'll have a look at them once I get home. Thanks!

 

[maroo]

Thanks Ann and Maroo

I'm pretty sure I know my reasons for not wanting to stay at GKTW... its the same reason I feel kind of strange contacting the wish foundation to finalize things.... we were really really lucky. DD was diagnosed at 12mo and had surgery at 13mo. She never needed chemo or radiation. She had MRI's and CTscans every 3 months for a year (under anesthetic for all) and then has been back to oncology every 6mo for follow up since. We had a huge scare last fall when her catecholomines came back seriuosly elevated... it ended up being lab error but it was the worst month of my life (they wanted to wait a month before rerunning the tests). We are so very lucky. Most children with this type of cancer just don't survive. DD thinks its normal to being going to the children's hospital as often as she does and doesn't really remember the surgery or the fear because she was so young. She just knows she has tiny scars on her belly where she was made well again. Even her older brother is only now able to somewhat understand what cancer is.... she deserves this trip and I know that with all my heart but she doesn't remember why... she doesn't remember what she's been through... and that's a wonderful thing but it makes me feel different somehow from many of the other families

I can understand that.

I can see how it would be different if your child was still sick vs feeling like a typical family again.

But lots of the families that go to GKTW are in your shoes. It may be more noticable to see kids that look sick - but lots of them are getting better or are already better. I saw lots of kids running around and playing at GKTW and look like nothing is wrong at all (which is GREAT!).

We felt odd going with Lauren because many people see her and think she is just not able to walk - she has Cerebral Palsy - and there is nothing terminal about that - by itself - I even had some comments here on the DIS about how she should not have accepted the trip.

Lauren is now really not doing well and I am so glad she took the trip when she felt good and was doing well.

She still looks different in her 350 pound wheelchair, but her parents felt very similarly...that she wasn't "sick enough" to go on a wish trip. I can see feeling that way.

But your DD still has to go to the hospital and get poked and proded...and no one knows if the cancer will ever come back (which is why the kids all do actually qualify).

Only you know what is best for your family and what you would enjoy the most as a family (and what you would be most comfortable doing), but I do hope that you guys will consider staying at GKTW in your options - there is nothing like it.

 

[casper_jj11]

Thank you so much for understanding. I had read quite awhile ago about your trip with Lauren ... just after DD was granted a wish. I'm sorry to hear she's not well. Its nice to hear many families are in the same boat as us... I'll definitely think about GKTW... I just read Noah's blog and saw the pictures... it really is a wonderful place.

 

[that's nice]

Thanks Ann and Maroo

I'm pretty sure I know my reasons for not wanting to stay at GKTW... its the same reason I feel kind of strange contacting the wish foundation to finalize things.... we were really really lucky. DD was diagnosed at 12mo and had surgery at 13mo. She never needed chemo or radiation. She had MRI's and CTscans every 3 months for a year (under anesthetic for all) and then has been back to oncology every 6mo for follow up since. We had a huge scare last fall when her catecholomines came back seriuosly elevated... it ended up being lab error but it was the worst month of my life (they wanted to wait a month before rerunning the tests). We are so very lucky. Most children with this type of cancer just don't survive. DD thinks its normal to being going to the children's hospital as often as she does and doesn't really remember the surgery or the fear because she was so young. She just knows she has tiny scars on her belly where she was made well again. Even her older brother is only now able to somewhat understand what cancer is.... she deserves this trip and I know that with all my heart but she doesn't remember why... she doesn't remember what she's been through... and that's a wonderful thing but it makes me feel different somehow from many of the other families

I'm going to chime in on your feelings. My DD3 just got accepted for her wish trip. She was diagnosed just after her first birthday with a Wilms Tumor- a malignant tumor that was growing out of her kidney. She was admitted and within a week she had to have her kidney removed and then go through 6 months of chemo. Luckily, her chemo was not as 'harsh' as other cancers but it still took a toll on her.

My daughter has scars on her stomach and on her upper chest where her port was inserted. She was just asking me yesterday why she has those and where my 'lines' are. We go to her oncologist every three months now for ultrasounds and CATscans and bloodwork. The week leading up to the scans gets a little stressful and the wait to hear the results is very nerve racking as well.

I think it is natural to feel the way you do as I feel the same way too. There are many other families that have been through more and are still dealing with issues. We are lucky as well. I think back to the day our world was turned upside down. I wouldn't wish that on my worst enemy.

I expressed some of these same feelings when I found out my DD wish granters were coming. If you have a second you can read them here:
http://www.disboards.com/showthread.php?t=2143771&page=92
It might give you a different perspective.

Tim

 

[LindaBabe]

Right now seems to be a slow time at GKTW. Wish families - if you are offered the chance to stay at the Village, I would HIGHLY recommend that you do so!

ALL children are treated like well children there, and accommodations are made so naturally that it is possible for many children to - oh, how do I say it? PLAY well, even if they aren't . . . for example wheelchair accessable carousel, with no change of level as you get on, zero entry pool, lifts and hoists where needed, accessable playgrounds - train, model boats, model railroad, and dozens of volunteers EAGER to help you and your child have the most fun possible!

We LIVE for your child's smile, her laughter, his excitement. You have no idea how much your children bless our lives. Please don't ever feel that your child wasn't 'sick enough' or if it even remembers having been ill. IT WAS, and that is sufficent to make him or her precious to GKTW and the volunteers.

 

[maroo]

Thank you so much for understanding. I had read quite awhile ago about your trip with Lauren ... just after DD was granted a wish. I'm sorry to hear she's not well. Its nice to hear many families are in the same boat as us... I'll definitely think about GKTW... I just read Noah's blog and saw the pictures... it really is a wonderful place.

It really is. I hope you don't mind me saying so much...I hope I didn't say too much.

They finally just straight up told Lauren's family that she does not have CP. CP doesn't progress as fast as she has. They have no idea what is wrong with her, but they are sure at this point that it is not CP. Of course, the diagnosis of CP is still on all of her claims.

She has gotten to the point where she can't really write much or do her own make up as well anymore. Her neck is so crooked (like scoliosis, but in her neck) that she has trouble holding her head up.

But she is in very good spirits and would probably tell anyone who asks that she feels great.

 

[kellyw8863]

I think when you have a child with chronic/life threatening health issues, especially when those issues have been present from a very young age, it is hard to understand that the life you live is so far from being normal, it isn't even funny. I remember thinking when we got the mito diagnosis for Ali when she was 3.5 years old, "Okay, what now?" It was hard for me to see as a big deal because nothing had really changed in our lives. We had already spent the first three years of her life in and out of the hospital. We had already been through half a dozen surgeries with assurances that there will be more. We already had a team of ten specialists and counting. Nothing had really changed except that we had a name.

I admit that I don't really consider the seriousness of having such a diagnosis until I read about the reactions of other mothers when they first learn that their children have mito, too. And intellectually, I know this. I know the statistics. But emotionally, there's a (healthy?) disconnect. I look at her and see a bright, smiling, happy four year old who loves to cuddle, eats peaches like it's her job, and is addicted to her Nintendo DS. Others look at her, and they see that very same child. Then, there's the fact that I can look to my left and look again to my right, and there are so many kids who are more severely affected than Ali, and I'm just thankful that I have what I have.

So I think as a parent in this situation, it's easy to underestimate what you and your family has been through because it's a.) perhaps all you've known, and b.) you are equipped with the ability to understand just how bad it could really be. I guess that's just my long-winded way of saying it's okay to open yourself up and let someone (e.g. MAW, GKTW, the folks here, etc.) do something to make your child and your family's life a little brighter. This isn't a game of whose pain is worse - all of our children are deserving because they have been dealt hands that most are lucky enough to have avoided.

 

[casper_jj11]

Tim - Wow. That's exactly how I've been feeling... word for word.... wow. Its strange to see your own thoughts being voiced by someone else. I guess its normal. Our parents (the grandparents) don't appear to quite agree. My coworkers have been asking why. Most seem to assume the prognosis is terminal in order to get a wish. I know we've been to Disney a few times but a wish trip is special and it just can't be bought... I want this to be the most magical trip for DD.... she adores Sleeping Beauty most of all... I want her to experience everything a wish trip has to offer for her ...