Christy and Alison- it is so good to have you back! You were missed. Alison- your words are so true!
Now I have something to share- something I haven't told anyone- not my mom/not my husband. I was afraid they would think I was crazy, or worse yet, that I was right. But somehow, I think maybe some of you will understand.
Nathan has been stable for 7 years- in fact each appt. showed his heart " just a touch better." Yesterday was our first "set back" ( even though it might not end up being a setback). Anyway, the first thought that went through my head was, " This is my fault! I never should have looked into MAW. He really wasn't that sick- now because I selfishly took a trip for our family, he is sick."
I know God doesn't work that way. I also know that you can't "cheat" MAW- a doctor has to say he qualifies. I know that all logically......but emotionally. Well sometimes emotions don't make sense.
Carol
Oh Carol...
You did not cause this! He was given a blessing...a MAW trip...because he qualified based on his condition. The trip did not make it worse. It just is...maybe? Maybe it is fine and just a difference in where the ultrasound was done? Did you use the same US tech? Maybe they measure a little differently. It is sort of subjective, isn't it?
Either way...you didn't do anything to bring this on. If anything...if it does turn out to be something. You did the exact right thing in accepting this gift. For him and for you family. Some more time where he is totally healthy.
You are not to blame!!! :
I need some more advice if anyone is willing to offer it.
What's the one best Disney World guide book to get, what would you recommend?
I went looking for one at the book store for me to bring to DD's upcoming VEEG and I got overwhelmed by the choices. So I thought before I bought one I would ask here.
I want something that I can read in the small bits of "down time" I will get while she is in for the 5 days or more. A novel would just be too heavy I figured so I thought why not a WDW guide something fun.
So what do you suggest??
I agree...Unofficial Guide to WDW was a good one. But...I have also heard of the Open Mouse ... Passporter...something like that? It is a book specially made for disabled kids/adults, etc. They have very detailed info about each ride, etc. You might want to look into that one, too.
Our wish granters are coming over on Wed!!!!! I think she is leaning toward Disney now...we have had a hectic couple of weeks, she had an allergic reaction to her chemo, so we are having to stop it..so it will be a nice break...I would love to leave ASAP..it has been a long winter in Wisconsin...
Woo Hoo!!! I would be SOOOOO excited if she chose Disney!!!
My favorite is the Unofficial Guide to Disneyworld, good luck with the hospital stay.
How exciting, we really felt things were moving when the wish granters came over. Too bad about the allergic reaction.
I haven't posted on here for a while, I don't know if you remember, my dd wanted a
Disney cruise and this is where I came looking for info (you guys are so awesome by the way) and they were not able to grant a Disney cruise but she is going on a
Royal Caribbean cruise in May and we are very excited. We have most of the details, airplane resv. and cruise resv. so we are having a great time getting ready. It has helped the last month or so, she was in the hospital for pneumonia right after Christmas for about a week and she is back in the hospital again now, it seems we didn't get it taken care of as well as we had hoped. But, things are looking good and she will hopefully be coming home next week. She has cystic fibrosis and has had quite a few picc lines and they are placing a port on Tuesday so we are hoping to come home Wed. or Thurs. depending on how she does.
I don't post on here often but I do read up on all of you a lot and you have all been in my prayers, I love reading about all your trips and maybe one day we will have a wish trip to Disneyworld and GKTW when my son is older and makes his wish (he also has CF) You who do the Big Give are just amazingly talented people I can't believe some fo the stuff you make I am in awe. Keep up the great work I love seeing the pictures of the kids when they are opening their presents.
Aw...CF...That brings back memories for me. I used to work at a camp for kids with CF. Until that Pseudonymous thing started up and they couldn't hang out anymore. Is that still true? That they can't get together in big groups? I loved that camp. Those kids are really special to me!
I do selfishly hope that your son picks Disney!!

And we will be here! Maybe with a little different crew...people tend to come, plan, hang around some and eventually move on with life, I guess. But I see me being here for years.
Hang with us...even if you are not doing the Disney thing.

We would love to keep up with you guys!
To all - thank you for your kind words of welcome...back! I've missed being here.
To Maroo -thank you for all you are doing to keep this thread blooming. You are one of our angels - the people who support and sustain us, and understand us as parents. You understand us as few do. Yup, I'll think about that 1/2 marathon, but I have to warn you...I'm a "runner"...a slow "runner", but one of "those" people. I haven't ventured much beyond the 10K mark, but I have always dreamt of moving up to the 1/2 marathon, so maybe, maybe this is the one...
We're experiencing a bit of a thaw here in Toronto, above freezing since I just don't know when...it' was marvellous today...but heading below freezing again tonight. For the last 3 years, I have accompanied my hubby to a conference in March, to either Scottsdale or Palms Springs, but that is not happening for us this year...our only nights away from the boys together to reconnect...I guess we will have to find some good movie nights together...! It just seems like such a long time until spring will reach the frozen north. (I bet Khalana (sorry I cannot find your real name) is busting a gut over Toronto vs. Winnipeg as frozen north!)
Mark was remembering some special treatment we had at Bubba Gumps at Universal - he complimented them on one of the (many) shrimp dishes he tried (they kept messing up my lactose-free meal, and he kept on eating what they brought!). He asked about the ingedients, and they responded in typical Wish Trip style...they brought him one of the special cookbooks from the Bubba Gump store with a card saying Happy Wish Trip! Oh, how many stories...
Have a good night, everyone. I shall say a special prayer for my Wish Trip friends!
Alison
Aw...you are so sweet. I really feel like this is my place, ya know? I do "get it"...Lauren's Mom is always amazed that I get it. She can't figure out why. I don't have kids at all, must less those with special needs.
But I worked at a camp for disabled kids when I was in High School. All summer long we would have one week sessions and kids with different disabilties would come...CP, CF, MD, Diabetes, Asthma (severe), Deaf AND Blind, Autism, and Cancer.
So I got to know those kids and some of their families. And I know what it is like to take care of them. How much it takes out of a person to do it. You guys that were blessed with special needs children....I know you don't always feel blessed...God knew what He was doing when He chose you to be the parent.
I am so pumped that we could have a few of us at the half!!!!! That would be so cool!!
I am getting there on my walking...up to 4.5 miles...at last weigh in (although not "official"...I was down over 10 pounds!) I am getting excited.
Aw...TR teasers!

That sounds like such a wonderful moment!!! I really do hope you can get around to that TR sometime.

I think you will find the magic resides there.
Maroo - if I do decide to register for the 1/2 marathon...how do I do it? any special instructions?
And by the way, congratulations on your progess so far! I have dropped a few pounds in the last few months, some by trying, some by virture of the "renovation and my mother has dementia" diet...which I DO NOT RECOMMEND!, but nevertheless, it is nice to discover that many of my clothes no longer fit. I need to step up the fitness plans, I've spent too much time away from the treadmill and I have a 10K in April that I refuse to miss this year (it's downhill mostly, after all!). Looking forward to running outside, although it will be nice to get back in our own house with our new "mini-gym" for me and Mark - he's starting on the treadmill too!
God bless,
Alison

No special instructions yet...although, you might want to go the thread I mentioned and at least throw your name in the hat as someone that is interested. So that they have correct numbers. He seems to think they will end up with only 30 people raising money...I hope to, alone, bring 10 people that I spurred on!
And I can't wait to see what creative ways I come up with to raise money!!
I will keep this board (and the other 4 that I am I am trying to persuade) updated as I find stuff out!!

And I am staying on top of it. And have already "raised" $80 for the cause. (Babysitting money and one donation!) Woo Hoo.
By the way...to clarify...I am NOT asking for donations on this site!!! Ever! You guys have WAYYYYYY to many medical bills to pay! So...no donations from here...Are we clear? I am serious. *puts serious face on*
*nice face* But, the more the merrier!!!

Come join me!!

We can come up with creative ways to train and raise money for the place we all love!
