Make a Wish (and other organizations) ~ Wish Trippers UNITE! Volume FOUR!

[that's nice]

One year ago yesterday Elliot received his last dose of chemo! A year later and we are planning the best celebration imaginable!

What a great milestone! Congrats Elliot!!!!!!!!

 

[kellyw8863]

One year ago yesterday Elliot received his last dose of chemo! A year later and we are planning the best celebration imaginable!

Fantastic!!!!

I have PMd the moderators (one on Friday morning and one yesterday morning - I don't want to lose the momentum now that the "bug" to finish my TR has set in) and will finish my TR as soon as it is moved. In the meantime, I will post that last day and our extension (AKL) to our family's blog www.drivenbyhope.blogspot.com . Feel free to stop by!

Kelly

 

[blessedmom4]

One year ago yesterday Elliot received his last dose of chemo! A year later and we are planning the best celebration imaginable!

I "celebrated" this on your PTR report; however, wanted to say a big YEA here as well!

Fantastic!!!!

I have PMd the moderators (one on Friday morning and one yesterday morning - I don't want to lose the momentum now that the "bug" to finish my TR has set in) and will finish my TR as soon as it is moved. In the meantime, I will post that last day and our extension (AKL) to our family's blog www.drivenbyhope.blogspot.com . Feel free to stop by!

YEA Kelly, I am so happy you will finish! I visited your Blog and once again cried, especially over the fun at 1900 Park Fare! What a magical time for your family, you SO deserve it!

 

[kellyw8863]

YEA Kelly, I am so happy you will finish! I visited your Blog and once again cried, especially over the fun at 1900 Park Fare! What a magical time for your family, you SO deserve it!

Thanks for stopping by! You must be referring to my annual New Years' Day reflection post. I did just post our final day at Magic Kingdom. I should be grading research papers, but I'm thinking I might try to plow through and get the rest of it done.

 

[blessedmom4]

Thanks for stopping by! You must be referring to my annual New Years' Day reflection post. I did just post our final day at Magic Kingdom. I should be grading research papers, but I'm thinking I might try to plow through and get the rest of it done.

KELLY! You have been so busy! I just read the last of the TR on your Blog. Yes, I was originally referring to the New Years Refelection, I wanted to keep you motivated that someone was reading .

I LOVED that your last day was so magical and I am thankful that the trip ended even better than it started. Sometimes I wish we could have a dress rehearsal for important activites, so we would know what to expect and avoid any pitfalls along the way...Your trip truly WAS aMAWzing, I can only imagine the sadness of having it come to a conclusion...so many emotions must play through your mind.

THANK YOU for sharing this with us all and for taking the time to finish. I, for one, am Thankful!

I LOVED what you shared about your Dad . I am the same way about things!

Praying for GOOD days and continued wonderful memories!

Blessings,
Judy

 

[kellyw8863]

I LOVED that your last day was so magical and I am thankful that the trip ended even better than it started. Sometimes I wish we could have a dress rehearsal for important activites, so we would know what to expect and avoid any pitfalls along the way...Your trip truly WAS aMAWzing, I can only imagine the sadness of having it come to a conclusion...so many emotions must play through your mind.

Thank you so much It was truly unbelievable.

If I could give only two pieces of advice for upcoming wish families, one would be to simply go with the flow, meaning don't go looking for magic and it will certainly find you. Stay open, smile and laugh as much as you can, and just enjoy being together. And I promise, promise, promise those special moments will find you. And two, as much as it may seem as though you are getting the "best of both worlds," choose to stay at GKTW (if at all possible) instead of on-property. It's an experience that truly cannot be replicated; you will not regret it. And with that, make time to explore the Village. You're not missing anything if you don't get to use those Universal tickets, or if you miss a day at Sea World. But you are missing things that can never be done again if you look at the Village as simply a place to eat and sleep.

 

[tinytreasures]

Thank you so much It was truly unbelievable.

If I could give only two pieces of advice for upcoming wish families, one would be to simply go with the flow, meaning don't go looking for magic and it will certainly find you. Stay open, smile and laugh as much as you can, and just enjoy being together. And I promise, promise, promise those special moments will find you. And two, as much as it may seem as though you are getting the "best of both worlds," choose to stay at GKTW (if at all possible) instead of on-property. It's an experience that truly cannot be replicated; you will not regret it. And with that, make time to explore the Village. You're not missing anything if you don't get to use those Universal tickets, or if you miss a day at Sea World. But you are missing things that can never be done again if you look at the Village as simply a place to eat and sleep.

wise wise words
I always try to tell new wish families to stop and smell the roses. We only did 3 rides max a day but we enjoyed ever step along the way. We are so blessed to be able to go back to GKTW (if Avy gets her wish )
My kids keep telling they want to go back there more then Disney world

 

[kailatilear]

Thank you so much It was truly unbelievable.

If I could give only two pieces of advice for upcoming wish families, one would be to simply go with the flow, meaning don't go looking for magic and it will certainly find you. Stay open, smile and laugh as much as you can, and just enjoy being together. And I promise, promise, promise those special moments will find you. And two, as much as it may seem as though you are getting the "best of both worlds," choose to stay at GKTW (if at all possible) instead of on-property. It's an experience that truly cannot be replicated; you will not regret it. And with that, make time to explore the Village. You're not missing anything if you don't get to use those Universal tickets, or if you miss a day at Sea World. But you are missing things that can never be done again if you look at the Village as simply a place to eat and sleep.

I loved reading your TR... Thank you so much for the advice. I was so worried about planning and then I have decided to not worry so much about it. Yes, we have certain things we want to do, but I want to be able to take some time to take it all in. The first day we are at GKTW it is a Thursday and we are just hanging out there all day. As far as anything else, besides are adr, whatever happens will happen, what is meant to be will be and I am going with no worries.

 

[Mom2mitokids]

How do you get non MAW members to post on your PTR? Is it because Korissa is an older child?I see on everyone elses PTR and they have other people post on there.

 

[that's nice]

How do you get non MAW members to post on your PTR? Is it because Korissa is an older child?I see on everyone elses PTR and they have other people post on there.

I think this question was brought up on the last thread... I think?

1)There are many people who read reports with out posting. Your thread has 336 posts but over 10,000 views.

2) It takes a while to build up a 'friendship' on here. My first TR was 27 pages long. Now I'm close to page 50 and I'm not even done with the second day yet.

2a) The best way to 'gain' followers is to respond to what people write on your TR (PTR), follow the links in their signature to their reports, comment to other people on other TRs. This takes a while.

3) Many times 'non-wish DISers' do not follow Wish Trip reports for a number of reasons. Some are: sometimes it is hard to find the right words to type to somebody in regards to a sick child, many wish TRs have been abandoned (for lack of a better term) in the middle by families who are too busy taking care of their child(ren), some people are squrimish when pics of surgeries, ports, feeding tubes, etc are shown



I am going to search to see if I can find the other post on the other thread. I know Maroo had a few good reasons too.


:EDIT:: I just went through 75+ pages of the other thread and I can't find it. Maybe I was dreaming it. LOL

 

[Mom2mitokids]

I think this question was brought up on the last thread... I think?

1)There are many people who read reports with out posting. Your thread has 336 posts but over 10,000 views.

2) It takes a while to build up a 'friendship' on here. My first TR was 27 pages long. Now I'm close to page 50 and I'm not even done with the second day yet.

2a) The best way to 'gain' followers is to respond to what people write on your TR (PTR), follow the links in their signature to their reports, comment to other people on other TRs. This takes a while.

3) Many times 'non-wish DISers' do not follow Wish Trip reports for a number of reasons. Some are: sometimes it is hard to find the right words to type to somebody in regards to a sick child, many wish TRs have been abandoned (for lack of a better term) in the middle by families who are too busy taking care of their child(ren), some people are squrimish when pics of surgeries, ports, feeding tubes, etc are shown



I am going to search to see if I can find the other post on the other thread. I know Maroo had a few good reasons too.


:EDIT:: I just went through 75+ pages of the other thread and I can't find it. Maybe I was dreaming it. LOL

I think you are daydreaming. Others have non MAW people posting on their PTR. I've been here since July and most of the post are mine. I just feel because Korissa is older and not cutesy(sp) like the others...we don't get the response. She is still a kid with a horrible disease that can strike at anytime. Just having a bad day and seeing this just hurts.

 

[jj0plin]

Hopefully you'll get dates soon.

Thanks! I hope so, I did talk to the wish granter on Thursday... she said there was availablity at GKTW during the time we want to go and that they would be looking at flight on Friday!!

Awesome way to celebrate that milestone!

Thank you!

What a great milestone! Congrats Elliot!!!!!!!!

Thanks!

Fantastic!!!!

Kelly

Thank you!

I "celebrated" this on your PTR report; however, wanted to say a big YEA here as well!

Thank you!! I meant to post it over there as well, but got distracted and never came back to it.

 

[blessedmom4]

I think this question was brought up on the last thread... I think?

:EDIT:: I just went through 75+ pages of the other thread and I can't find it. Maybe I was dreaming it. LOL

I think you are daydreaming. Others have non MAW people posting on their PTR. I've been here since July and most of the post are mine. I just feel because Korissa is older and not cutesy(sp) like the others...we don't get the response. She is still a kid with a horrible disease that can strike at anytime. Just having a bad day and seeing this just hurts.

Tim, You were NOT dreaming, Kris wrote this on the Wish Tripper's thread last July: "How do you get people to post? do you post question here or on you PTR? Feeling kind of lonely" on page 129 (Post #1927) and you responded during this conversation as well (post #1932).

I am putting Mary's detailed, thoughtful response below also, I hope you don't mind Maroo! It was page 130, post #1942, Wish Tripper Thread Volume 3.

It was easy for me to find, because I remember Maroo saying have a catchy title (Please don't think I have a lot of time, I don't. I remember Maroo wrote to have a catchy title for your PTR and I put catchy title in the search engine on the thread...so I found it quickly)... I thought about our PTR title a LOT, before I started our PTR...never dreaming we would be waiting over another YEAR to get to go! I figure people are going to be sick of me by then...that being said, PLEASE come visit us at our PTR and say hello EVERYONE is appreciated and welcome!

Kris, I am SO SORRY you are feeling Korissa doesn't matter, she does! And so do you!!! I am sure Tim is right, some people simply don't know what to say in the face of so much sickness and what appears to be sadness (after Tim visited our PTR, he said he was at a loss for words). I know for our family, people always are amazed that I don't let illness define who we are as people or limit what the children can accomplish! You are obviously the same way, because you post wonderful things your children are involved with.

Maroo wrote:

Popularity on the DIS - I think I should address this, because I have had a few PM's asking this and I think we could have a discussion about it...



I have tried to figure out for a while now why one pre-trip report seems to take off and have lots of posts and others are slower with fewer posts.

I know our pre-trip report was only a few pages long for a while, but then some people "saw" it and recommended it to other DISers and then people started posting.

By the time we did the TR, I had a lot of great pictures and funny stories and crazy stories to tell, that it sort of took off on its own. It was fun to write.

Here are my random observations on what seems to me to draw people to post (in no particular order):

- Lots of pictures. When they see pictures of your family, it draws them in.

- Regular updates - the more updates you post over time, the more people have to talk about and respond to.

- Encourage "banter" - ask for people's opinions and just live your life on the pre-trip report - and some will come join ya.

- Links to posts - You can put this on the first post of your pre-trip report and give them "links" to updates. This is not really hard to do, but takes a little practice and is frankly hard to maintain - I can help you if you really want to do it. I did it for Lauren's TR, if you want to see what it looks like.

- Catchy Title

- Give "updates" in the title. Most veteran trip report writers put "Updated 7/30" or "7/30 post #200" or something so that people can easily know when it updates.

- Make sure a link to your pre-trip report is in your signature

- Post on other people's TRs. Including "regular" trip reports - especially regular TR's.



Generally speaking the more someone is involved on the DIS in general, the more people tend to find and post to their reports. One of the "issues" - I think - with wish trips is that most of the wish trippers come and go fairly quickly and some past families have never started or some never finished their TR's. So long time DISers have gotten sort of "burned" - I guess - on past trips where they have gotten all emotionally involved in a family or trip and then once their big trip is over, they sort of fall away and leave us really wanting to know what happened on the trip, or if their children are ok, etc. So I think this sort of keeps some long time DISers from getting "involved" and posting on wish trip reports - if this makes any sense??

There are some REALLY good reasons that wish families do this - and I am not AT ALL saying anything bad about any wish family that comes and goes like this *REALLY* - I want that to be really clear - because I get it - it is really hard to write a trip report after you have come back because the responsibilities of taking care of your children come first and are often very time consuming and for some the trip was not what they expected or maybe it was so wonderful and now it is over that they just can't bear to write about it - so I am really, really not saying at all that this should be any different. It is what it is. I think families need to do what they need to do.

But I think that is why there are not more people posting on wish trips that are not at all involved in wish trips. Some of the "regular" posters on the DIS have also gotten very involved and fell in love with children that have passed away, and it is hard to jump in again.

Many of us, though, stay around and post - and the more people that do stay, the better it is for all of us and all of those that come after us. Many families have posted pre-trip reports and trip reports and have finished them and left us all feeling so fulfilled! It is so awesome to plan with a family and then "live" the TR with them and then watch it unfold in all of it's glory (or not!) - good or bad - we love it. And I hope that everyone that joins us over here will join in with both feet and get involved on the DIS and with each other - and we can support each other and help each other along the way.

Some of my closest friends are on the DIS and I hope that everyone finds that here. It takes a lot of work to maintain friendships in cyberspace - but it is so worth it, in my opinion.


Kris, Hang in there, your family IS going to have a magical time VERY SOON, with an extended trip and LOTS of Pixie Dust , Your magic has already started with NiniMorris gift!!!!

And if anybody wants to come visit OUR PTR and don't know what to say after reading...just log on in and say HI! You would make my day!

 

[kailatilear]

I updated my ptr, but just wanted to let everyone know. We had an er visit last night and found out Abby has more compression fractures The whole story is on my ptr and it involves a penny

 

[kellyw8863]

Generally speaking the more someone is involved on the DIS in general, the more people tend to find and post to their reports.

I think this is key here and bears repeating. While our lives are certainly consumed with our children's medical issues, that is not the case for the vast majority of people who belong to the DIS. (General) You need to find a way to connect with people who do not live our reality: there are only so many different ways to say, "I'm sorry, that must be really difficult." When you start posting in other areas and offering up your own experiences, you will find that people will return in kind.

I know it's easier said than done, but try to let go a little of what your expectations are and just do your thing. There were absolutely days where I felt like, "What's the point of doing a PTR/TR," and then I realized that at the end of the day, I needed to do it for me, to have a record of what is a very personal and unique journey. The friendships then fell into place, and while I don't post tons here, I am FB friends with several people who I met through the process, and we regularly keep close tabs on each others' families.

 

[shruley]

Just got a letter from Make a Wish this weekend that my daughter was approved for a Wish! Said in the next 2 weeks we should hear from our Wish granters. We asked Mikella what she'd want to wish for, she said Disney World immeadiatly. And then repeated Disney World the next 6 times she heard the word "wish" over the weekend! When asked about the back-up wish, she said the order was Disney World, then Nickelodan Rides, then Mickey's Boat. She is really into rides lately, so I think she'd be more into the rides than seeing any of the characters! In the paperwork, our Chapter (Minnesota) said they must chose a "non-travel" back-up wish? She didn't seem to have anything, so I told my husband to just let her tell them her list, and maybe they'll sense she just really wants to go somewhere!!

What kind of questions will they ask her at her interview? She's 4. I keep seeing in their paperwork all the "think beyond Disney World" quotes and stuff, and I think I have this fear they'll "trick her" (for lack of a better word) into picking something else, but that's probably a stupid thought. (Although the first time we asked her about a Wish, she wanted to go to the Mall!)

I've been lurking here for awhile, but trying not to get my hopes up too much (and still trying not to, since I know you can't predict what comes out of a 4 year olds mouth.) I figure it will be interesting to see how this all unfolds!

 

[jj0plin]

Just got a letter from Make a Wish this weekend that my daughter was approved for a Wish! Said in the next 2 weeks we should hear from our Wish granters. We asked Mikella what she'd want to wish for, she said Disney World immeadiatly. And then repeated Disney World the next 6 times she heard the word "wish" over the weekend! When asked about the back-up wish, she said the order was Disney World, then Nickelodan Rides, then Mickey's Boat. She is really into rides lately, so I think she'd be more into the rides than seeing any of the characters! In the paperwork, our Chapter (Minnesota) said they must chose a "non-travel" back-up wish? She didn't seem to have anything, so I told my husband to just let her tell them her list, and maybe they'll sense she just really wants to go somewhere!!

What kind of questions will they ask her at her interview? She's 4. I keep seeing in their paperwork all the "think beyond Disney World" quotes and stuff, and I think I have this fear they'll "trick her" (for lack of a better word) into picking something else, but that's probably a stupid thought. (Although the first time we asked her about a Wish, she wanted to go to the Mall!)

I've been lurking here for awhile, but trying not to get my hopes up too much (and still trying not to, since I know you can't predict what comes out of a 4 year olds mouth.) I figure it will be interesting to see how this all unfolds!

Congratulations!! My almost 3 year old wished for a banana the first time they asked!! They actually didn't even make him choose a second wish, just asked me to give a second choice on dates as a backup.

They asked him what his favorite color was, his favorite place to eat, his favorite food, his favorite place to shop, and what he wanted to wish for... that was pretty much it!

Will you be starting a PTR? Please post a link when you do! and congrats again!

 

[jwallaceent]

First let me say this is a WONDERFUL site and gives so much information!

My name is Jennifer and have been married to my husband for 14 years. I actually was blessed to marry my best friend! My oldest daughter will be 14 in May. My son is 11. Then my third child who I call my surprise will be three in February!

My husband...my best friend!

Our Three Blessings!


Let me start by saying, we had a normal family life up until 2008. My husband and I both were working full time. Our kids were in school and we were just going down the road of life as "normal parents" would.

Our Family!

When I found out in 2007 I was pregnant I was shocked, happy, and then excited. She was born February 27, 2008. We never knew this day would change our lives forever! She was born with jaundice. Nobody was concerned. I mentioned it several times to her pediatrician but was told it was normal and they would keep watching it.

Brooke shortly after she was born...

A long story short, when Brooke was 5 weeks old, I took her back to the pediatrician for her jaundice. The doctor said ok we will order a bili level. Another pediatrician walked by and said..”Oh NO, with her that jaundice we need to order this and this and this….” Thank God she walked by. She called me that night to tell me her liver functions tests were off and she was ordering an ultrasound the very next day.

We had the ultrasound and before I could get back into my car from the hospital, the pediatrician’s office was calling telling me to go to another hospital they were waiting on me to do a liver biopsy. We were admitted for two days. They told us on discharge that Brooke had biliary atresia. I couldn’t pronounce it more or less comprehend what they were telling me. They said I had to now drive to John Hopkins and talk with this team about a surgery that can buy Brooke some time but babies that have biliary atresia usually do not live past two! WHAT?!?!?!?!?

Brooke at INOVA when she got her liver biopsy and diagnosed with biliary atresia.

I was devistated! My husband and I drove over 3 hours to John Hopkins. When we got there what I thought was an evaluation was actually a pre-operative visit. We were allowed to go home for the weekend but return on Monday for surgery. I was scared to death!

After Brooke’s surgery, the next step was to wait…wait to see if this surgery was working and would buy Brooke some time. After four months of waiting, it was determined the surgery was a failure and we needed to start the process of a transplant evaluation.

Brooke waiting to see if the Kasai was a success...

We were at this point informed by our insurance company that we would not be able to have Brooke’s transplant at John Hopkins. We would have to go to Georgetown University. Another obstacle to the many we have hurdled in her short 6 months of life….but what an awesome amazing hospital facility and staff!!! Things happen for a reason; this facility is 2 hours closer and just amazing!

Brooke with her daddy and siblings days before her transplant.

We started our transplant evaluation and my husband and I were tested to be a donor for Brooke. We were both denied. My sister-n-law contacted me immediately and asked to be tested. She went through the testing and was a perfect match! God sure was with us every step of the way. Brooke and Jessica (our sister-n-law) are not blood related and she was a perfect match! On October 9th, my husband’s birthday, Jessica saved my baby’s life!

Brooke and Jessica Pre-Transplant

Brooke and Jessica Post-Transplant

Brooke and Jessica this past Easter


Jessica is doing great and Brooke is doing well. She rejected in November and December of 2008. She also fights EBV which in transplant patients can cause lymphoma. Her team is following this closely and watching and will intervene if need be.

Brooke shortyly after her transplant prior to her first rejection.

Brooke with one of her amazing doctors and another transplant friend.

Georgetown University recommended Brooke for the Make A Wish! She told them during our interview she wants to swim with the dolphins. I am not sure how well a three year old can swim with dolphins but they said they will let us know. She will be going to Disney and Sea World either sometime in April or May of this year. They also said we would be staying at Give Kids the World. My family is very excited and looks forward to this trip as we have never been! I do not know anything about Disney or Florida so any advice would be greatly appreciated!!


Brooke and her siblings have a beautiful realationship together! I love to watch them. Life is too precious and should never be taken for granted. Here are just a couple of those moments!

 

[jj0plin]

Welcome, jwallaceent! Your children are beautiful! Brooke sounds like such a little fighter What had to happen when she rejected?

 

[maroo]

How do you get non MAW members to post on your PTR? Is it because Korissa is an older child?I see on everyone elses PTR and they have other people post on there.

I think you are daydreaming. Others have non MAW people posting on their PTR. I've been here since July and most of the post are mine. I just feel because Korissa is older and not cutesy(sp) like the others...we don't get the response. She is still a kid with a horrible disease that can strike at anytime. Just having a bad day and seeing this just hurts.

I think this is key here and bears repeating. While our lives are certainly consumed with our children's medical issues, that is not the case for the vast majority of people who belong to the DIS. (General) You need to find a way to connect with people who do not live our reality: there are only so many different ways to say, "I'm sorry, that must be really difficult." When you start posting in other areas and offering up your own experiences, you will find that people will return in kind.

I know it's easier said than done, but try to let go a little of what your expectations are and just do your thing. There were absolutely days where I felt like, "What's the point of doing a PTR/TR," and then I realized that at the end of the day, I needed to do it for me, to have a record of what is a very personal and unique journey. The friendships then fell into place, and while I don't post tons here, I am FB friends with several people who I met through the process, and we regularly keep close tabs on each others' families.

Tim, You were NOT dreaming, Kris wrote this on the Wish Tripper's thread last July: "How do you get people to post? do you post question here or on you PTR? Feeling kind of lonely" on page 129 (Post #1927) and you responded during this conversation as well (post #1932).

I am putting Mary's detailed, thoughtful response below also, I hope you don't mind Maroo! It was page 130, post #1942, Wish Tripper Thread Volume 3.

It was easy for me to find, because I remember Maroo saying have a catchy title (Please don't think I have a lot of time, I don't. I remember Maroo wrote to have a catchy title for your PTR and I put catchy title in the search engine on the thread...so I found it quickly)... I thought about our PTR title a LOT, before I started our PTR...never dreaming we would be waiting over another YEAR to get to go! I figure people are going to be sick of me by then...that being said, PLEASE come visit us at our PTR and say hello EVERYONE is appreciated and welcome!

Kris, I am SO SORRY you are feeling Korissa doesn't matter, she does! And so do you!!! I am sure Tim is right, some people simply don't know what to say in the face of so much sickness and what appears to be sadness (after Tim visited our PTR, he said he was at a loss for words). I know for our family, people always are amazed that I don't let illness define who we are as people or limit what the children can accomplish! You are obviously the same way, because you post wonderful things your children are involved with.

Maroo wrote:

Popularity on the DIS - I think I should address this, because I have had a few PM's asking this and I think we could have a discussion about it...



I have tried to figure out for a while now why one pre-trip report seems to take off and have lots of posts and others are slower with fewer posts.

I know our pre-trip report was only a few pages long for a while, but then some people "saw" it and recommended it to other DISers and then people started posting.

By the time we did the TR, I had a lot of great pictures and funny stories and crazy stories to tell, that it sort of took off on its own. It was fun to write.

Here are my random observations on what seems to me to draw people to post (in no particular order):

- Lots of pictures. When they see pictures of your family, it draws them in.

- Regular updates - the more updates you post over time, the more people have to talk about and respond to.

- Encourage "banter" - ask for people's opinions and just live your life on the pre-trip report - and some will come join ya.

- Links to posts - You can put this on the first post of your pre-trip report and give them "links" to updates. This is not really hard to do, but takes a little practice and is frankly hard to maintain - I can help you if you really want to do it. I did it for Lauren's TR, if you want to see what it looks like.

- Catchy Title

- Give "updates" in the title. Most veteran trip report writers put "Updated 7/30" or "7/30 post #200" or something so that people can easily know when it updates.

- Make sure a link to your pre-trip report is in your signature

- Post on other people's TRs. Including "regular" trip reports - especially regular TR's.



Generally speaking the more someone is involved on the DIS in general, the more people tend to find and post to their reports. One of the "issues" - I think - with wish trips is that most of the wish trippers come and go fairly quickly and some past families have never started or some never finished their TR's. So long time DISers have gotten sort of "burned" - I guess - on past trips where they have gotten all emotionally involved in a family or trip and then once their big trip is over, they sort of fall away and leave us really wanting to know what happened on the trip, or if their children are ok, etc. So I think this sort of keeps some long time DISers from getting "involved" and posting on wish trip reports - if this makes any sense??

There are some REALLY good reasons that wish families do this - and I am not AT ALL saying anything bad about any wish family that comes and goes like this *REALLY* - I want that to be really clear - because I get it - it is really hard to write a trip report after you have come back because the responsibilities of taking care of your children come first and are often very time consuming and for some the trip was not what they expected or maybe it was so wonderful and now it is over that they just can't bear to write about it - so I am really, really not saying at all that this should be any different. It is what it is. I think families need to do what they need to do.

But I think that is why there are not more people posting on wish trips that are not at all involved in wish trips. Some of the "regular" posters on the DIS have also gotten very involved and fell in love with children that have passed away, and it is hard to jump in again.

Many of us, though, stay around and post - and the more people that do stay, the better it is for all of us and all of those that come after us. Many families have posted pre-trip reports and trip reports and have finished them and left us all feeling so fulfilled! It is so awesome to plan with a family and then "live" the TR with them and then watch it unfold in all of it's glory (or not!) - good or bad - we love it. And I hope that everyone that joins us over here will join in with both feet and get involved on the DIS and with each other - and we can support each other and help each other along the way.

Some of my closest friends are on the DIS and I hope that everyone finds that here. It takes a lot of work to maintain friendships in cyberspace - but it is so worth it, in my opinion.


Kris, Hang in there, your family IS going to have a magical time VERY SOON, with an extended trip and LOTS of Pixie Dust , Your magic has already started with NiniMorris gift!!!!

And if anybody wants to come visit OUR PTR and don't know what to say after reading...just log on in and say HI! You would make my day!

Whoa...I missed all this yesterday...


First of all... to you Kris! Please don't be upset.

Let me add to what I wrote above...


I do think the key to getting "regular" people to post is to join their TR's and pre-TR's. That is how I did it, I think...I had favorite TR's that I followed because they were fun to read and engaging. Just post as though you are a regular person that doesn't have a sick child or children in your case. Post on other TR's and join in their banter and eventually someone or a few will join you on theirs. Some won't...maybe most won't...but some will.

I think several things factor in...I think it would be naive to say that cute little kids don't get some followers because they are just cute to watch. But Lauren was older, so I know it isn't just the age difference.

Some caring DISers have followed the Wish Trips for a couple of years now...but don't post. And I know a few of them...and I think for some it is so sad to really get to know the family and walk with them down the road of losing a child...so some of those people have had to step back from the wish trips. Personally I find a comfort in walking with families down the impossible road of losing a child and hope that as a complete stranger I can offer some comfort, even though I am not really "there" with them...but I think some DISers just don't have the emotional energy or maybe even extra that comes with getting involved. I hope that makes sense??

It is easier, probably, for them (regular DISers posting), to identify with a family that is struggling with something they "know"...cancer, for example, is well understood and most people think the majority of kids with cancer die - which is far from the truth now (although we obviously have lost several - which is terribly sad).

It is probably also easier to identify with a child with obvious disabilities getting a wish. Lauren, for example, is obviously disabled. Although I did have one very, very cruel person on the DIS tell me that she didn't deserve a wish because she "just has CP"...nevermind how off based, mean spirited, and just plain incorrect that comment was...but for the most part, children in wheelchairs or with severe, easy to see impairments are probably easier to understand the wish, too.

The MITO community is growing and the awareness is getting out there. I know many Mito parents now (not just from the DIS) and it is becoming better understood...although it is harder since Mito can be more benign in its presentation or more severe in its presentation...which makes it harder to "follow" for someone with limited medical knowledge...

If you combine the three...her age, lack of physical characteristics to show obvious disability or impairment and the lack of understanding about Mito...then it seems to add a bit more to the puzzle that helps me understand it a little better.

But I feel your frustration. Hang in there!!! Hopefully voicing your feelings will help a lurker come out of the woodwork to support you guys and hopefully some other families on here, as well.