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

[alaskanabbott]

Wow! I didn't know that you have friends that live down here? Where are they from? I spent most of my time in Pass Christian right after the storm - it was crazy down here!


I spent a lot of time in Pass Christian when I was younger. I had a beau who had a house there, and my boss had a cabin we went to often. AHHHH good memories

 

[maroo]

Ok so what you're saying is that if we stay 2 extra days (and say we don't use tickets on one of the MAW days (we're planning on just doing stuff at GKTW one of the days). We could save the disney tickets and use them on one of our extra days? Just checking

Right...you can use your first two days while you are "official" and then when you move to another place for the extended part you can use your third day.

The same goes for the Universal ticket, too.

Sea World, if you wanted to hold on to that one, is the same way, too. They all have expiration dates on them, but none should be before you leave.

What are your dates? Or general time period you are looking at going?

If it is during a "party" season (Fall/Winter) - then it can be a good idea to buy a party ticket for one of your evenings and go to the parks at 4:00 and stay till they close - gives you almost a full day in the MK for a lot less cost than a regular full day would cost - which is a great deal for a MAW family. Sorta gives you four days to play with. But if you are going at a different time of year then that may not be possible. (It also may conflict with a party at GKTW that you might rather attend anyway.)

Wow! I didn't know that you have friends that live down here? Where are they from? I spent most of my time in Pass Christian right after the storm - it was crazy down here!


I spent a lot of time in Pass Christian when I was younger. I had a beau who had a house there, and my boss had a cabin we went to often. AHHHH good memories

Really! Wow! Small world.

My church had a POD (Point of Distribution) down there for a couple of months following the storm, so I spent a lot of time there over the weekends. We also helped at the Tent City down there. I have fond memories of painting the walls of the army style tents they were going to use for the "daycare" for the families living in the Tent City. The Tent City ended up being open for almost 2 years, I think. I can't imagine living in a tent that long.

There was also a "Katrina Kitchen" down there that we helped with, too.

My friends had a house on the water on 90 in Gulfport, but it was, of course, a complete loss. They asked me to take a picture of their house to survey the damage since the Red Cross was letting me in, but I could not FIND the house. All of the landmarks around it (the piers, etc) they were all gone. I could not even find it at all. I eventually found it by the in ground pool...but there was still nothing left but their slab.

 

[mjarecki]

Right...you can use your first two days while you are "official" and then when you move to another place for the extended part you can use your third day.

The same goes for the Universal ticket, too.

Sea World, if you wanted to hold on to that one, is the same way, too. They all have expiration dates on them, but none should be before you leave.

What are your dates? Or general time period you are looking at going?

If it is during a "party" season (Fall/Winter) - then it can be a good idea to buy a party ticket for one of your evenings and go to the parks at 4:00 and stay till they close - gives you almost a full day in the MK for a lot less cost than a regular full day would cost - which is a great deal for a MAW family. Sorta gives you four days to play with. But if you are going at a different time of year then that may not be possible. (It also may conflict with a party at GKTW that you might rather attend anyway.)

We are really hoping to go October 24-November 1st. Making the last couple of days on our own. I don't know if it can get put together that fast, I just gave them the days last week. We also gave them a date in November and one in the last week of December. I emailed the dates to our MAW chapter last Wednesday, but haven't heard anything yet. I sent them another email with some info today, but still haven't gotten a reply email back. It's driving me crazy wondering if we can get arranged for next month. We want to go soon because my mom is getting listed for her 3rd lung transplant and so we want to go soon, not to chance being in Florida when she gets the call for her transplant. Plus we would like to go before flu and cold season gets here. Our son as a rare lung disease called Bronchiolitis Obliterans and gets sick really easily.

 

[Mom2mitokids]

We are anticipating our MAW trip as it is still in the planning stages. If our MAW chapter will let us, we are going to stay an additional 2 days on our own. Can I use the tickets that we get from GKTW on those days? I was thinking of saving them if possible. Any advice?

We stayed 2 extra days the last time and we used IOA tickets after we left GKTW. We had no problems and even still had the magic of the GAC. We are planning on staying 3 days this time and doing the same thing. We also want to go to the beach and a water park.
We started this process in mid July and we still don't have 100% confirmed dates. Our first time was Nov.14-20, but they said it wouldn't happen as it's too soon. Our next chose was March when it's not too cold, but not too hot.

 

[J'sMum]

Wow! I didn't know that you have friends that live down here? Where are they from? I spent most of my time in Pass Christian right after the storm - it was crazy down here!

Yes, I met a women online years n years prior to Katrina we would chat almost near daily so in a sense a current time pen pal. We ended up doing a room meet and thats how I landed my way down in Biloxi, Mississippi.

Crazy ! it was so sad, somewhere I have a picture where I was standing on the broken bridge and when the plane arrived at the airport there was only a 1/2 an airport ! literally there were tarps all over the place. The destruction I saw at the coastline in Biloxi blew my mind and broke my heart for all the families affected by that storm. and still are being affected by the storm. But it was an experiance of a lifetime good or bad.

 

[rcq925]

I posted this on my PTR, but wanted to post it here so everyone would know about contacting your airline!

The kids love giving each other bunny ears! I can remember doing that as a kid and thinking it was the funniest thing in the world

Hayley is in love with her Minnie Cinderella Dress and wants to wear it to school! I told her after the Make A Wish Trip she can wear it whenever she wants!

I had posted a question on the Wish Tripper thread about airlines waiving fees and got the answer from Air Tran.

I e-mailed them and they sent me back a very nice and quick reply. They said that baggage fees are waived for Wish families (so that will save us some money that can go towards souvenirs!)

I had also inquired about whether they could move us to business class (their first class which two by two more comfy, larger seats). I check the online system and no one has purchased the business class seats yet and there are 10. They said to inquire when we check in at the airport and that if they were still available that we could have them

I also asked about Hayley and Nathan meeting the captain and seeing the cockpit. Figured while I was at it, might as well as for everything, right? She said that would depend on the captain and the crew, but again, to ask them when we are at our boarding gate!

So hopefully we will get some extra

Just wanted to share this so that those of you following my PTR and going on future wish trips would know that you might want to e-mail your airline ahead of time and see if you can get any of these things done for your wish child!!
__________________

 

[blondietink]

During my DS's wish trip, we were able to meet the captain and visit the cockpit after we landed in Orlando.

 

[cantwaittoseemickey]

Ahhh I wish I would have asked about the baggage fees in straight terms. When I called I had asked about the medical stuff. I think out of our entire trip the baggage fees is what stressed me the most and we flew Air Tran. Oh well hindsight now I guess. But that is really good to know. This will definately help with stress levels

 

[Mom2mitokids]

How do you all handle jealousy? Kyra is so jealous of Korissa and Kylee. Like today...we are going to Cold Stone for Kylee and Korissa to make there ice cream creation for the 30th. She doesn't even want to go. She isn't really looking forward to the trip, because it'll be all about korissa. I feel so bad, but I tell her it's good that you are healthy. I ask her if she wants to be Kylee and be poked hundreds of time and be in the hospital all the time. I also think she makes up her leg pains, so she can get some sympathy. I think that is why Steven act up...to get our attention. Just wondering how everyone else deals with this.

 

[balloondoggle]

During my DS's wish trip, we were able to meet the captain and visit the cockpit after we landed in Orlando.

We got to do that on our return flight, also after landing. So cool, I didn't think they did that anymore!

 

[balloondoggle]

How do you all handle jealousy? Kyra is so jealous of Korissa and Kylee. Like today...we are going to Cold Stone for Kylee and Korissa to make there ice cream creation for the 30th. She doesn't even want to go. She isn't really looking forward to the trip, because it'll be all about korissa. I feel so bad, but I tell her it's good that you are healthy. I ask her if she wants to be Kylee and be poked hundreds of time and be in the hospital all the time. I also think she makes up her leg pains, so she can get some sympathy. I think that is why Steven act up...to get our attention. Just wondering how everyone else deals with this.

I had never considered that the sibs would feel that way, other than a special trip. We had to keep reminding them that it was Kayla's trip so she came first. Ours have ways of getting special attention of course, like all kids do, but they've never shown any kind of jealousy to Kayla. Maybe because she's not the "squeaky wheel" around here. Until she gets sick, anyway, and then they are very solicitous towards her. Could it be that we got lucky on that one?

 

[J'sMum]

How do you all handle jealousy? Kyra is so jealous of Korissa and Kylee. Like today...we are going to Cold Stone for Kylee and Korissa to make there ice cream creation for the 30th. She doesn't even want to go. She isn't really looking forward to the trip, because it'll be all about korissa. I feel so bad, but I tell her it's good that you are healthy. I ask her if she wants to be Kylee and be poked hundreds of time and be in the hospital all the time. I also think she makes up her leg pains, so she can get some sympathy. I think that is why Steven act up...to get our attention. Just wondering how everyone else deals with this.

I can only offer a bit of advice on thius subject, and thats simply it because what works for one child does not always work for another.

Katelynn was always my ill child. James other then occasional tummy aches when little in most ways seemed healthy, hind sight now shows me just how wrong I was but I presumed his tummy aches was jealousy etc attention grabbing concepts from him due to fact his sister was so ill.

Katelynn once James started to become so ill seemed to suddenly get worse. Her knee's hurt more her legs her you name it.

In both cases I was wrong. James obviosuly turned out to be seriosuly ill and Katelynn turned out to have a hallow bone in her knee and will most likely end up with a knee replacement once she has finished growing.

My ramble on this is , I know a small ache can sometimes seem to be attention getting, and it may be that the child simply needs a bit of extra attention but it may also be that there is something actually happening. I would double check that it isn't anything first ( I;m sure you have just saying in case because it took me awhile)

If it turned out not to be anything wrong have you thought of big brother big sister for her? Many think it's for kids from broken homes or lacking brother and sisters and thats not always the case. Sometimes a child simply needs a way to feel special. and where she is healthy this is an option for her to feel special amongst a crew of ill kiddos that need extra attention even though we know they would trade all that attention for normalcy.

Jealousy among siblings is a normal reaction. Even Katelynn who is 17 age wise , emotionally a bit younger has had jealous moments with James on this Wish Trip. even though she is included, and the trip has been tailor made for her too and even the Big Give paid special attention to her as well she still has a moment now and then where "I was always and still am always so sick but I never had a wish granted" etc etc etc, Now I know if I persued it that Katelynn would still qualify for a wish. But as a family we have chosen not to because we do feel that both kiddos are gaining the benefits of this trip. But again the jealusy does come up now and then.

If the jealousy becomes so great that it inhibits the everyday living and the chance to enjoy all thats going on around her then maybe even counseling would help? It's alot to take on being healthy while siblings are ill, soo much guilt falls on thier shoulders even though no parent , dr or anyone involved does it. Many children just automatically start a cycle of the guilt by simply feeling angry at a moment that they are not getting the attention, then will feel guilty for what they felt, then will feel guilty they are healthy and siblings are not and that they feel greedy for wanting the attention etc etc etc vicious cycle.

I'm tired today so I hope i am putting the words out here correctly

bascially see if there is some way to make her feel extra special be it Big brothers big sisters or some other type of function etc. I am not sure if you have done what I have which many of us have but get fustrated with the one who is not currently ill and say something like , well you should be happy you don't have to deal; with x y and z if you have it's soo normal to have done so and maybe next time one of the kiddos get jealous over another even if you do not cvompletely understand and agree with the jealousy try the empathy approach? something along the lines of validating that you hear how they feel and understand and diversion to the jealusy that comes with, I know with katelynn and James If i was in situation you are in where one had something special happening and other did not and one did not want to go I would say something like, " I know how hard it is for you that xyz123 is happening, but how cool is it that because of xyz123 you get the opportunity to experiance abc.

If I am not making sense typing this out let me know? LOL James had remicade today and that always gets me all fuzzy. but when i read yoru post i was all OMG I know what she is going through feeling etc and also if you ever need to just have someone on the outside to talk to pm me and i can give you my phone number or I can call you etc free calling on my end where I have Vonage.

 

[J'sMum]

I had never considered that the sibs would feel that way, other than a special trip. We had to keep reminding them that it was Kayla's trip so she came first. Ours have ways of getting special attention of course, like all kids do, but they've never shown any kind of jealousy to Kayla. Maybe because she's not the "squeaky wheel" around here. Until she gets sick, anyway, and then they are very solicitous towards her. Could it be that we got lucky on that one?

Sounds like you have been very lucky, I also have noticed that kids seem to react diffferently depending on the illness. I will use a few examples I have come across, One of my neighbors has a set of twins one was born healthy the other was born with Cerebral palsy. the older siblings and even the twin treat her with such special care no jealousy as they became older because they knew her brain fucnction was not quite where it should be etc and every day was a challange.

Another woman I know has 3 kids all within same age range one has lupas at times the child is sick as sick can be and other times seems ok for most part minus reg dr visits and few extra pills. that family runs into issues because where the kids all seem within level there is nothing truly setting them apart physically/mentally minus an illness jealousy becomes a huge deal.

then course you have my two, both with pretty well same issues, just each ones issues vary in intensity, IBS Crohns, bronchial asthma, Asthma/chronic pnumonia, arthritis and a few other things to add into it, they have moments where they just get sooo fustrated and feeling left out etc

 

[maroo]

I am not a Mom - so I have very little to say on this....

The only thing I would add is that I hope anyone out there that has two children that would qualify for a wish would pursue one for each of their kids.

I know that the whole family "gets" the wish - since it is a trip - but I so firmly believe that each child should feel special and have a special trip for them if they qualify.

I know so many families with two children who qualify that have decided not to pursue the 2nd wish - and I get why...I just think it makes such a difference in the life of the child - a real boost in self esteem and the feeling that they can accomplish something really great - that each child should experience it.

If the family is able - help with some fundraising to offset the cost or pay it forward - but don't hesitate to get two wishes.

That is just my 5 cents.


*and this isn't directed at any one person posting...I feel this way about all of the people I know that live near me, too.*

 

[J'sMum]

I am not a Mom - so I have very little to say on this....

The only thing I would add is that I hope anyone out there that has two children that would qualify for a wish would pursue one for each of their kids.

I know that the whole family "gets" the wish - since it is a trip - but I so firmly believe that each child should feel special and have a special trip for them if they qualify.

I know so many families with two children who qualify that have decided not to pursue the 2nd wish - and I get why...I just think it makes such a difference in the life of the child - a real boost in self esteem and the feeling that they can accomplish something really great - that each child should experience it.

If the family is able - help with some fundraising to offset the cost or pay it forward - but don't hesitate to get two wishes.

That is just my 5 cents.


*and this isn't directed at any one person posting...I feel this way about all of the people I know that live near me, too.*

I love your 5 cents and I so do agree in all cases but ours. LOL long story as to why

 

[kctwinmommy]

I'm so sorry to be absent from this thread, I just got overwhelmed with things going on with the kids and school. But I posted a few questions in my PTR if anyone can take a look and give me some ideas! Thanks!!

 

[Mom2mitokids]

ugh...posted this long post and it didn't go through. I will post it again tomorrow.

 

[maroo]

ugh...posted this long post and it didn't go through. I will post it again tomorrow.

aw shucks!

I hate it when that happens. It happens to me sometimes, too. More often with PM's lately though...?? Especially if I try to post from my phone.

 

[Mom2mitokids]

I am not a Mom - so I have very little to say on this....

The only thing I would add is that I hope anyone out there that has two children that would qualify for a wish would pursue one for each of their kids.

I know that the whole family "gets" the wish - since it is a trip - but I so firmly believe that each child should feel special and have a special trip for them if they qualify.

I know so many families with two children who qualify that have decided not to pursue the 2nd wish - and I get why...I just think it makes such a difference in the life of the child - a real boost in self esteem and the feeling that they can accomplish something really great - that each child should experience it.

If the family is able - help with some fundraising to offset the cost or pay it forward - but don't hesitate to get two wishes.

That is just my 5 cents.


*and this isn't directed at any one person posting...I feel this way about all of the people I know that live near me, too.*

Take 2...
I am one of those that didn't want to do a a second trip. We were blessed with a trip of a lifetime. This was our 2nd trip as a family. The other one was a 2 day trip to San Diego. Before our trip the wish granter asked if any of the other kids had Mito. We said that korissa was in the process of getting diagnosed. They said as soon as she does she gets a wish(this was in front of her). When we got back from our trip we became involved with MAW. At each event they asked us if we were going to put referrals for the other kids(at this time we saw the Genetist and it was confirmed that all the kids have Mito, but may not show symptoms...except for Korissa). They kept saying they do many family with multiple kids that all get wishes. It took a year plus(after many talks with the granter and other...in front of the kids) we decided to ask the Ped if she would do it. She said she would. Once she got the referral, she had many question so she called the Northern California chapter and L.A. Chapter and they both said that the child had to be in a life threatening condition at the time of referral. I told the Ped that's not true. The child has to have a life threatening condition, but nothing is stated that they had to be at time at referral. It's in the website. If that's the case...than those kids that are in remission wouldn't qualify. The Ped denied all the kids. They were sad, but understood.

We saw our wish granter at the Holiday party and asked how the referral was going. I told her what happened. She got someone else higher up and we talked...in front of the kids. She couldn't do anything as far as being denied, because what's done is done, but gave me pointer when and if we tried again. We didn't want too. We again saw people from MAW at 2 other fundraisers and told us to do the referral again, but this time just korissa. Again we still weren't ready and not sure we wanted too. In March of this year we did the walk for Wishes and again it was brought up(in front of kids) and we said we will talk with Korissa GI.

Korissa had an appt. late March and we talked to her about it. She said she would do it...if Korissa wanted it...of course she does. A month later she calls me and said she was having problems with the referral. She spoke to the kids Mito specialist and he said Mito wasn't a progressive disease. What!!!...Mito is a progressive disease. Ask any other mito doctor. If that's the case than why is Kylee and korissa getting worse and not better. Kylee went from 1 feeding tube to 2. She went 2 years without being in the hospital to being in the hospital 29 days so far this year. My daughter can't even poop without meds. The GI didn't know what to do. I just asked her to please don't turn the referral in if she couldn't give her her wish. She agreed not to turn it in. I just didn't want another denied letter in the mail.

We had a talk with Korissa and told her this was a good thing. Korissa and Kylee both had another GI appt in July and the GI again brought up MAW...ugh...just when I finally got it out of Korissa mind. She said she got more paper from MAW and that she really wanted to do it, but not sure how. I asked her if I can see the paper and she got it out. I just said if you check this...say it's progressive, and sign your name...Korissa gets a Wish. I told the GI if she felt Korissa deserves a wish than that's great, but if not...that's ok too. I was leavingit up to her. I just want to put this behind us. One week later we get a call from the wish granter that Korissa got her wish.

Because the other kids can't have a wish we asked Korissa if she can choose a trip, so we can all enjoy it. She agreed to it(I know she would of picked a shopping spree...computers). It was her choice to go to Disney World and all the other agreed. We had a blast last time and so much we didn't get to do. That's the long story on the getting the second wish. I don't think the other should get a wish as they have nothing life threatening at this time. I say that because Mito can show it ugly butt anytime.

Back to Kyra.... I don't show favoritizem(sp) to any of my kids. If we buy something for one kid..they all get something. Kyra and I have the closes relationship. She comes to me and we talk. We go shopping together(when I have money...lol) as the other girls likes to stay home, but than she keeps saying Kylee is my favorite and she is my princess. I do tend to her a little more, just the fact she is 7 and she has a lot of medical needs. She has endured 12 surgeries...4 of them major and countless medical procedures. Some I wouldn't even do, but she does them like a trooper. I love all my kids the same and I just wish she would see it. If I take out my camera..the first thing she says...taking pictures of Kylee your princess. If you look at my pics..I take pics of all the kids. Not just one. I wish she can see that too. I think concouling(sp) is what she needs. Maybe finding some pixie dust for her. Today was a hard day. I tried to get the 4 girls to do a creation together, but after 10 min of disagreeing...I finally said that just Korissa and Kylee will be doing it. It was mainly Korissa creation though...lol. If that wasn't bad enough...Our local newspaper was there and talked with Korissa and we talked about Kylee. That's were she lost it. You can see the tears in her eyes. From that moment...she has been in a sad/bad mood. I'm stressed out. I haven't felt well the last week. Stress and Mito don't go well. Sorry for this long post...my other was longer...lol. Just wanted to see what other do. My husband just say..she is 14 and she should understand...hello... how would you feel... that's right... not great when you have 2 sibling that are getting wishes and all the talk is on them. Yes...we said the trip is for all the kids, but Korissa is still going to get more pixie dust than anyone else.

 

[Mom2mitokids]

I can only offer a bit of advice on thius subject, and thats simply it because what works for one child does not always work for another.

Katelynn was always my ill child. James other then occasional tummy aches when little in most ways seemed healthy, hind sight now shows me just how wrong I was but I presumed his tummy aches was jealousy etc attention grabbing concepts from him due to fact his sister was so ill.

Katelynn once James started to become so ill seemed to suddenly get worse. Her knee's hurt more her legs her you name it.

In both cases I was wrong. James obviosuly turned out to be seriosuly ill and Katelynn turned out to have a hallow bone in her knee and will most likely end up with a knee replacement once she has finished growing.

My ramble on this is , I know a small ache can sometimes seem to be attention getting, and it may be that the child simply needs a bit of extra attention but it may also be that there is something actually happening. I would double check that it isn't anything first ( I;m sure you have just saying in case because it took me awhile)

If it turned out not to be anything wrong have you thought of big brother big sister for her? Many think it's for kids from broken homes or lacking brother and sisters and thats not always the case. Sometimes a child simply needs a way to feel special. and where she is healthy this is an option for her to feel special amongst a crew of ill kiddos that need extra attention even though we know they would trade all that attention for normalcy.

Jealousy among siblings is a normal reaction. Even Katelynn who is 17 age wise , emotionally a bit younger has had jealous moments with James on this Wish Trip. even though she is included, and the trip has been tailor made for her too and even the Big Give paid special attention to her as well she still has a moment now and then where "I was always and still am always so sick but I never had a wish granted" etc etc etc, Now I know if I persued it that Katelynn would still qualify for a wish. But as a family we have chosen not to because we do feel that both kiddos are gaining the benefits of this trip. But again the jealusy does come up now and then.

If the jealousy becomes so great that it inhibits the everyday living and the chance to enjoy all thats going on around her then maybe even counseling would help? It's alot to take on being healthy while siblings are ill, soo much guilt falls on thier shoulders even though no parent , dr or anyone involved does it. Many children just automatically start a cycle of the guilt by simply feeling angry at a moment that they are not getting the attention, then will feel guilty for what they felt, then will feel guilty they are healthy and siblings are not and that they feel greedy for wanting the attention etc etc etc vicious cycle.

I'm tired today so I hope i am putting the words out here correctly

bascially see if there is some way to make her feel extra special be it Big brothers big sisters or some other type of function etc. I am not sure if you have done what I have which many of us have but get fustrated with the one who is not currently ill and say something like , well you should be happy you don't have to deal; with x y and z if you have it's soo normal to have done so and maybe next time one of the kiddos get jealous over another even if you do not cvompletely understand and agree with the jealousy try the empathy approach? something along the lines of validating that you hear how they feel and understand and diversion to the jealusy that comes with, I know with katelynn and James If i was in situation you are in where one had something special happening and other did not and one did not want to go I would say something like, " I know how hard it is for you that xyz123 is happening, but how cool is it that because of xyz123 you get the opportunity to experiance abc.

If I am not making sense typing this out let me know? LOL James had remicade today and that always gets me all fuzzy. but when i read yoru post i was all OMG I know what she is going through feeling etc and also if you ever need to just have someone on the outside to talk to pm me and i can give you my phone number or I can call you etc free calling on my end where I have Vonage.

We don't have a big sister/brother out here. I'm sure she wouldn't do it anyways. I do take her leg pains seriously. I know it's the Mito. I told her I'm talking to the Genetisit next week about it and I switch Peds and taking her the first week of October to see her. I'm always tell her to go sit and relax, but nothing really can be done about it(I don't tell her that).

We really felt the same as you on the second wish, but if you my post down a few..you know why we decided to do it. ((hugs)) Katelynn will see many pixie dust soon.