~How TWO trips became...who knows? ~ It's a TRIP! and an upgrade.... 4/22

[kdzbear]

I am glad the trip is back on. I am still praying for Rachel and for you and the rest of her family to stay healthy so you can enjoy your trip!

 

[maroo]

You guys are the BEST! Thank you for praying...

Here is an update....


Rachel is now sick. 101F and coughing up all kinds of junk. (sorry, that is gross!)

Anyway...she is ALREADY on pretty strong antibiotics, so her lung dr is concerned and at one point today said she should not go. He didn't say she "couldn't" go...that she shouldn't go. Rachel's Mom talked to him again - after talking to Rachel. Rachel says she doesn't really "feel" bad - which is the same thing my bronchitis has been doing to me...I really have not felt bad, just coughing and running fever.

Anyway...he said she CAN go. But severely cautioned us...to not overdo it.


I am asking you guys...to please...pray for Rachel. That she would feel GREAT on this trip. Joyce and Rachel both are prepared even for a hospital stay when she gets back - but she wants to go to Disney and she wants to see her friends at the MPS conference (several of the other children with MPS are going this year!!) and doesn't want to wait. She says she wants to LIVE as long as she is living. To stay at home in her room is not living...and we agree.

So...

WE ARE GOING!!!!!!!!!!

But please pray for us! Please pray for safe travels. For Rachel and for us - that we would make wise decisions about what to skip and what to make sure we catch.

Thank you all so much for praying for her!! She has been through a lot - and you guys that have been around a while know that...I want her to have a wonderful trip with her family.



I HAVE to add this picture...
She is hanging in her hoyer lift with a towel on her head...looking pitifully sick. She thought the picture was so funny she posted it on her Facebook page! She cracks me up.

So...pray with us....that we will have some HAPPY ... DISNEY ... pictures to post next week!

 

[pipersmom]

Continuing our prayers, Maroo..tell Rachel the pic is too cute, just makes me want to reach out and hug her!! Too funny she posted it on Facebook!

 

[jordanyosh]

I'm glad you all are going!

I'll be praying for safety and rest.

 

[kdzbear]

I am sending more prayers for everyone. Take it easy and just take in the sites!

 

[maroo]

Ok...for you guys that don't know...a Hoyer lift is like a swing that carries her around. In her case it can carry her from her bed to the bathtub and back (of course)...she was being carried across and I said, "You look pitiful!" And she said, "Take a picture!" I grabbed her iPhone and took a picture. She said she did look pretty pitiful and then posted it on her FB page. Hilarious!

Continuing our prayers, Maroo..tell Rachel the pic is too cute, just makes me want to reach out and hug her!! Too funny she posted it on Facebook!

She is cute!

Thank you so much for your prayers!

I'm glad you all are going!

I'll be praying for safety and rest.

Thank you so much!!!!!

I am sending more prayers for everyone. Take it easy and just take in the sites!

Definitely will do that!! Thank you for your prayers!

 

[twinmum]

Maroo - glad to hear that you are still going...but feeling your heavy heart, as well. I know you will all take to make the right decisions about doing too much.

I also related completely to the description of how this is Rachel's "Wish Trip" without really being a Wish Trip. We were so conflicted about accepting Mark's Wish Trip, as you know. But...we are so glad we did accept it, and now we are finding ways to "pay it forward." For now, that means financial contributions, but we are hoping to volunteer as a family for Starlight Starbright in the future. And maybe some day go back to volunteer at GKTW...that would be the best!!! (OK, the boys would want to help at the ice cream palace, but that would be self-serving...if you get what I mean!)

Thinking of you, with prayers for Rachel...
Alison

 

[StefaniLyn]

Maroo I had no idea when I pm'ed you that all of this was going on with Rachel. I am so sorry that you had such a scare just a few days before your trip but THRILLED beyond belief that you are actualloy going (and hopefully, now there!!!)!!!! I am praying that Rachel's condition remains at the very least stable until she returns. Even better would be if a little dose of Disney helps her body heal.

To even fathom that this may be Rachel's last trip anywhere is incomprehensible and devastating. 21 years is just too young. I hope that those attending the conference are eventually successful in funding the fight to find a cure for Rachel's disease. Nobody should ever have to consider "one last trip" at her young age.

Bless you for all you have done for Rachel and her family. I hope that your trip is magical and that the weather is pleasant.

 

[Sandy321]

continued prayers!

and I am reminded of my BFF - she had Cystic Fibrosis in the early 80's' - she was a testament to the Lord's work in this world! She was an amazing spirit and taught me so very much - I know how Blessed I am for knowing her -

and I may not have met Rachel - but she is a blessing to those of us who have gotten to know her thru you Maroo! She is an amazing person - and she will shine so strong in Disney - and at Christmas too!! You have always taken things at her pace!! She reminds me of an old saying about God's not finished with me yet!! He has lots of work for her to do!!

I still hope we can meet up in September - Nashville dont forget!!

 

[that's nice]

Maroo-

I hope you, Rachel, and the fam have a great time in WDW!! I missed the big send off on Liesa's TR. Talk to ya when you get back!

 

[jordanyosh]

Hope you have a great trip!

 

[pipersmom]

Hoping your trip is going wonderfully!

 

[maroo]

Hello everyone!!!!

I am back!

You know that Post Disney Depression some of us get after a wonderful Disney World trip...Well, I got it.

For some reason, within hours, life hit me square in the face. As of this morning life is happening all around me and most of it is bad news. Personal junk with a couple of close friends and my boss' daughter is dying of cancer. She has 4 kids and it is Christmas - for crying out loud. Which people around here are doing a lot of.

Because my boss is out, I have a considerable amount of work to do - both catching up on mine and working on hers - so, Welcome Home, Mary, Welcome Home.

I have already started working on a trip report...I WILL be doing one for this trip. It was a trip FULL of many, many blessings and something that will be remembered for a long, long time.

So, I am not really glad to be home and can't even DIS for a bit - so hang with me! I will have lots of time this weekend with the Holidays.

 

[All7OfUs]

Welcome BACK!!!!

 

[pipersmom]

Welcome back, Maroo..I wish you had a better homecoming. We'll be keeping you in our prayers and hoping things get a bit better.

 

[pipersmom]

Okay, so I finally took the time to look up your March dates...and...we overlap!! We'll be there from the 2-8, and Jennifer (momofwishkid) is there I think from the 1-7! I hope we can find a way to connect..I would be !!

 

[MeMom]

Just coming over to say Happy Holidays, Merry Christmas, Happy New Year, and/or whatever applies. I hope there will be some peace and happiness among the chaos and sadness that is around you.

My dad was in the hospital dying of cancer one Christmas. My oldest two kids were little, and I just remember it all being a bit of a blur. We sat endless hours at the hospital and just didn't feel much like celebrations of any kind. But, those two little ones smiled sweet smiles on Christmas morning and gave warm hugs, and I knew we would get through it stronger in the long run.

I don't know what it is like to have a seriously sick or dying child. I have known those who have, and it is heartbreaking. My thoughts and prayers go out to all families who are dealing with that, especially throughout this holiday time.

 

[maroo]

Okay, so I finally took the time to look up your March dates...and...we overlap!! We'll be there from the 2-8, and Jennifer (momofwishkid) is there I think from the 1-7! I hope we can find a way to connect..I would be !!

Woo Hoo!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Just coming over to say Happy Holidays, Merry Christmas, Happy New Year, and/or whatever applies. I hope there will be some peace and happiness among the chaos and sadness that is around you.

My dad was in the hospital dying of cancer one Christmas. My oldest two kids were little, and I just remember it all being a bit of a blur. We sat endless hours at the hospital and just didn't feel much like celebrations of any kind. But, those two little ones smiled sweet smiles on Christmas morning and gave warm hugs, and I knew we would get through it stronger in the long run.

I don't know what it is like to have a seriously sick or dying child. I have known those who have, and it is heartbreaking. My thoughts and prayers go out to all families who are dealing with that, especially throughout this holiday time.

Man. I know. I am so with you.

It is not that chaotic for me...just my friends around me, really.

But many, many families here on the DIS are dealing with sick children or children that have recently passed away. At the same time we have many families that are celebrating this Christmas - that their wish was granted and that they had a wonderful trip to Disney. So that makes me smile!

 

[Sandy321]

It is a hard time of year for so many -

How is Rachel doing?

 

[maroo]

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