Driving 6000 Miles for the Magic: A Miracle Trip

[crgfsu1]

First of all, Happy Birthday to KathyRN & Who'syourMickey & to you Christimae!!
I will be leaving on the 2nd to go to WDW and will not be around on the actual dates to send wiishes!! Hope you all have great days.

I loved the pictures - they are absolutly wonderful! I know the feeling - glad to be home, but sad in a way to be home. I guess all vacations have to come to an end.

I wont be back until the 13th; so I will catch back up then. Have a great couple of weeks!

Cathy

 

[Momof2wCF]

Great update. ChristaMae! Glad for your sakes that there was no drama on the way home..although it made for good suspenseful cliffhangers on the journey there! Is it just me or is Snoopy in the clouds on picture 6 on the last post? (the one right after the rock cliff) Looking forward to more!!

 

[nts4wdw]

Home again, home again, jiggetty jig! I loved all the pictures, but I imagine after awhile all the rocks start looking the same when you want to be home. Looking forward to your next installment (So glad it's not quite over.)
And if I don't post on Wednesday, have a magical B-day!!!!!

 

[PittypatBR]

After a trip of that length and complications, it must have been very tough to make the last few days. I'm looking forward to next weekend's post, but in the meantime: HAPPY BIRTHDAY!! My granddaughter's birthday is Oct. 1 - great time of year to be born!

 

[Diamondintheruff]

I have been following along quietly until recently. Your pictures caught my children's eyes and they have made me go back to the beginning and read your report all over again to them. Re-reading your trip has been our families bedtime story the last few days. We would all cuddle up in our jammies and gather around the computer. Watching my children's faces as they were reading about your experiences with the companion restrooms was priceless. "That's injustice" said one. "Why Mommy would someone bud in front of her?" said another. They had tons of questions for me from everything about your medical equipment and treatments, to the geography of your trip. You have been quite an education into the world of accessability for them (and me). To thank you for sharing seems somewhat tame in light of the importance your story had on our family, however for lack of a more elegant phrase "thank you".

p.s. my kids wanted you to know that their favorite attraction was the philharmagic too.

 

[tokyodisneydad]

I think you have touched all our lives here and I second the Thanks. There are times when my life and my own health issues (leukemia) make me question my own self worth to my family, but I remember your story, lift my head up high and see the silver lining behind the dark rain clouds.

In Japanese Arigato Gozaimasu!!

Oh and Happy Birthday!!

 

[Studios94]

Christamae,

I have enjoyed your TR so very much!! You and your family are an inspiration to all of us. Thank you for letting me share in your adventure.

Happy Birthday!

 

[Backstage_Gal]

Oh, that post above (well, one of them) reminds me, Christamea.

I went to AK last Sunday, and really noticed companion bathrooms first time and realized what they mean to someone who needs them.

So thanks for educating us!

 

[LeeLee2U]

GREAT updates!!! I'm all caught up now!!!
I want to say thanks for all the info. It really helped us on our trip. One ironic thing is when we were at AK Ds had to go to the BR so we runt o the nearest BR and WOW right in front of my is the companion BR and is that sign vacant YES!!! 3 feet from the door a lady pushing a stroller cuts right in front of me and opens the door. O.K. Then she just stands there and holds the door for a moment looking @. Was she realizing that just maybe the lady and the boy in the w/c needed the BR? Up walks her DH with a little girl. He gives the little girl to the lady and he takes the stroller. The lady tells the little girl to come on in and use the BR. Aaaarrrggghhh I'm feeling a little like a right then. I proceed to go into the ladys BR where there are SEVERAL empty stalls. The handicapped one was occupied by a child so I parked the w/c in front of a stall left the door open and proceeded to help DS out of the chair and let him potty!! That happened a few times w/ the handicapped stalls. It was always a woman w/ a child cutting us off. But I have to say there were some very nice people that when they would see this happening they would hold doors open for us, help block a door so DS could use the BR and one woman even stopped a lady going in and said excuse me are you disabled? The woman replied NO!! She said WELL see the handicapp sign on the door? I think this young man needs that stall more than you do!!!! Not a magical moment I know. But it was for DS because he couldn't of waited 5 seconds more!
Anyway I thought of you every time we had to use the BRs
And I also sent your way when we rode soarin. B LOVED it!!!! I can see why you do!!
Hope all is Well and that you are having a WONDERFULL BIRTHDAY!!!!!!!!!!!!!!

 

[DonaldTDuck]

It's still your birthday where you are so . Hope it was as special as you deserve.

 

[eternaldisneyfan]

Thank you to all your replies and happy birthday wishes! A special thanks to eyeheartgoofy (Kara) for the card.

DisneyJo: It was good to get home and sleep...thanks for the birthday wish!

Backstage_Gal: thanks for the birthday wish! And signing!

jlcd: I enjoyed sharing and am so glad that people have enjoyed!

Who'syourMickey: We went through some very pretty areas...Happy birthday to you and thanks for the birthday wish!

KathyRN137: It was good to be home but soon I got homesick for Disney. Happy birthday and thanks for the birthday wish!

nyyankeegirl: Pin trading is addictive! We did have one last adventure returning the RV (part of my last episode)...thanks for the birthday wish!

mrsksomeday: I am a bit sad that the story is almost over, too. I will miss sitting down to write. Thanks for your kind comments.

crgfsu1: Have fun on your trip! Will there be a trip report??? thanks for the birthday wish!

Momof2wCF: I couldn't resist a few cliffhangers ...I don't see Snoopy but I always liked playing the cloud game.

nts4wdw: The scenery was beautiful but after a while instead of exclamations of "ooh, beautiful!" it was more "bummer, that mountain is going to slow us down." Thanks for the birthday wish!

PittypatBR: You are right, the last few days were tough. But after a few days home, it was tougher-disney depression. thanks for the birthday wish!

Diamondintheruff: Wow. I don't know what to say to that incredibly wonderful comment. I am honored that in my own small way I could help...And what thoughtful children you have. Thank you.

tokyodisneydad: A big thank you to you, too. From the choral song 'Help Me Find a Dream. "Yet its in the darkest midnight that stars of heaven shine most bright." thanks for the birthday wish!

Studios94: Thanks for those kind comments and thanks for the birthday wish!

Backstage_Gal: Thanks for being so receptive.

LeeLee2U:

I thought of you every time we had to use the BRs [bathrooms]

That would be a great tag! I am glad that I helped your trip and hope it was a wonderful one! and thanks for the birthday wish!

DonaldTDuck: thanks for the birthday wish!

Here comes an emotional update:

 

[eternaldisneyfan]

How this changed me warrants a little background information. I hope it doesn’t bore you or be declared too off topic.

If you’ll recall, I had a lot of ambivalence about this trip. I wondered if it was even possible. Let’s back up.

I got my trach and GJ tube and became partially vent dependent in 2003. I have always been disabled with a progressive disease but during this time period (two part spinal fusion, 189 day hospital stay with tons of complications including the trach)-I progressed a lot, lost a lot of abilities, and needed to change my lifestyle.

At first I was in denial and tried to make things the way they were before. My Dad had to go to school with me to write and do my medical care. But I greatly neglected my medical needs. I could feel the mucus junk stuck in my chest. But wouldn’t suction it out. I wouldn’t wear my vent. This led to some very scary medical crises and illnesses of pneumonia every 6 weeks throughout the school year. I often would fall asleep off my vent-dangerous for me because I don’t breathe when I sleep. Even when my Mom would find me blue and listless, I refused to yield to common sense. Until a particularly scary episode where I was found blue and when waken could barely hear (thankfully resolved). At this point I did a 360.

I decided to be completely medical. I would take breathing treatments exactly every 2 ½ hours. I would follow an exact regimen that would NOT be changed no matter what. I would not go to social events-too dangerous. I would stay at home as much as possible. It was a pretty miserable life especially since I used to be a bit of a daredevil.

With this new approach to life, a trip to Disney World was plain scary. I wanted it so very badly. But going would completely go against my new regimen. So I started a little investigation. I was surprised at my doctors (especially pulmonologist) positive reaction and encouragement. Maybe I could be healthy and have a life-with some precautions. First we got my ventilator on my wheelchair so I could wear it when I needed it in a convenient way. I realized that taking breathing treatments every 2 ½ hours at Disney World wasn’t realistic. So I loosened up and found that 5 treatments a day was good.

Then there was the trip itself. I crossed the mountains-and with the precautions-didn’t go into respiratory distress. I was around tons of people and didn’t get deathly ill. Some days, I missed breathing treatments. But with some compensation medication the next day-I recovered. In short, yes I had restrictions and yes, I needed support and medicine and precautions. But that didn’t mean that I couldn’t do things. I just needed moderation.

And then there was Wishes. Watching that show lit a fire in me. It made me want to fully utilize my opportunities and pursue possibilities.

See, for a while, this lady from church, Laura, had been learning all my medical care. But we had moved veeeery slowly 1) because of Mom’s protectedness 2) because of my fear. After 10 months, she still hadn’t taken me anywhere. Well, when I got home that changed. I cast aside my fear, pushed Mom to trust, and took a leap of faith. To make a long story short, Laura is now one of my best friends. Every month we go on a long outing to a place that brings me much joy. We try to get together once a week. If there is a church activity, we go together (social time).

I have the drive to do things. That doesn’t mean that things are perfect or exactly how I want. I still don’t have a nurse so I am not in college. I am at home a lot. But I am not languishing at home. Currently I am investigating volunteer opportunities and reading college textbooks to keep the mind active. I volunteer online. I go to church every Sunday. I have the wonderful special monthly outing with Laura and her friendship.

I have found a healthy balance in my medical needs. Not neglecting nor obsessing but striving to thrive.

And I owe this new life perspective to the Miracle trip. And the admonition in a song “Wishes! Dream a dream, Wishes! Set it free, Wishes! Trust your heart, Just Believe, Just Believe (just believe), Make a wish, and do as dreamers do (just do as dreamers do), Make a wish! (Wishes!) Dream a dream! (Wishes!) Cross your heart! And your wish...will...come...true!”

“…and all our wishes (all our wishes), will come true.”

This trip made an impact well beyond 6000 miles. For good.

Next and final update Saturday October 13
The End - Page 40, Post #591

 

[KimAshton]

I do not want to see this TR come to an end.

 

[KathyRN137]

I have found a healthy balance in my medical needs. Not neglecting nor obsessing but striving to thrive.

And I owe this new life perspective to the Miracle trip.

Thank you, Christamae! You are an inspiration. Some people may think it's corny, but like you, I am a firm believer in Disney Magic. I feel blessed to have been allowed to share your Miracle trip.

Kathy

 

[eyeheartgoofy]

I'm so glad you had the opportunity to take this trip and decided to share it with all of us on the Disboards! Thanks for sharing your struggle to find balance .

And I'm happy you received your Bday card! Hope your day was great !

 

[Momof2wCF]

Christamae, thanks so much for the background. I printed it off for DS (and me!!) for times when his cystic fibrosis slaps him around. It's very enpowering to have a positive attitude, and I think we can all help each other that way. Especially you, b/c you have such an amazing way with words. Thank you again for all that you have done to open our eyes to your world.

 

[rushing]

You are wonderful person, I'm going to miss your reports. Take care.

 

[Backstage_Gal]

Christamea, thanks so much for this background and update and your whole inspiring story! Looking forward to your next installment, but so sad it is over!!

 

[PittypatBR]

As always, Christamae, I am so happy that you have been able to find balance in your life. It has to be scary to make the kind of leaps of faith that you have to make in order to get out and do the things you want to do, and I commend you for your courage. You are very much an inspiration to everyone reading this, and I thank you for sharing with us. Good luck with school, and keep on writing!

 

[DisneyJo]

Oh Christamae I am so incredibly pleased that this trip changed your life for the better, you are a very special person with such a positive outlook on life, I hope you continue to write as you have such a talent, thanks for sharing with us