Driving 6000 Miles for the Magic: A Miracle Trip

I'd rather read you than Hemingway, anyday. Truly, you are talented. I can't wait to read more. What an amazing family you have.
 

wow!

I think I need to point meanest mom and LALA over this way~~ THIS is one true journey!!
 
Lan: Thanks! Update coming right up.
AC7179: Thanks for the compliment-I do enjoy writing
IkeandMike: I do have a great family :) ...I always thought Hemingway was overrted ;) ...depressing!
never enough pooh: Thank you! I also like Pooh
hrsmom: Thanks! Update below...
Disfan3: It was a true journey...Thank you for your faithful following :)

Christamae
 
The plan was to get up at 5:00 so we could be on the road by 8ish. But the prepacking of the RV lasted until 2ish. So we got up at 6:30.

Now our packing cannot be all predone. Once I was up I started my first breathing treatment of Xopenex and Pulmicort. Once Danielle was up and started on her Xopenex treatment Dad started the rapid breakdown of equipment. Out came two boxes and in went the monitors (2), wheelchair battery chargers (3), my mike charger, 2 6 prong plug adapters, extension cords, Mom’s bi-pap, and Dad’s CPAP. Oh, I almost forgot all our props. I have a special head pillow, 2 props for my ventilator tube, two arm props, leg pillow, foot pillow, and butt prop. When you can’t move and things dislocate-set up is supreme. Danielle has a special head pillow and 7 other props…boxes now full. Then my nighttime stand with ventilator and food pumps and chargers and my oxygen concentrator. Danielle’s ventilator and oxygen concentrator. There was already an oxygen concentrator in the RV hooked up to the generator. Meanwhile I am finishing up my morning medical care with a Pulmozyme breathing treatment, Atrovent puffs, teeth brushing and chapstick. Once that is done, Dad grabs the nebulizers and toothbrush-in the bathroom bag. During the whole packing process, interruptions abound for the bathroom, suctioning, etc. Finally, about 9:00 we say a prayer and are off!

What better way to start a road trip then by jamming to the music of the Cars CD. “Life is a highway, I wanna ride it all night long…” and “get your kicks on Route 66.” By the way we saw Amarillo, Gallup, New Mexico, didn’t forget Winona, Kingsman, or Barstow and Oklahoma City wasn’t mighty pretty but we drove through there, too. I tried to write in my journal, it was very bumpy-these words came out fine… “As the wonderful realization [of this trip] hit my eyes brimmed with tears and my heart with gratitude for my incredible family and the goodness of God…”
:grouphug:

About 30 minutes into the drive, Grandpa calls Grandma and tells her that her brother, Bill called. Not so remarkable, except that Bill called to say that he had moved from West Virginia…

To Orlando.

My Grandma hasn’t seen Bill since I was 7 (14 years). He is getting up there in age and was recently diagnosed with Alzheimers. Grandma has really, really been wanting to see her brother.

Now, she will.

I also wrote:
“Thank heavens for the bathroom as this is our 3rd bathroom run in 1 and a half hours of driving.” I don’t know if it was the excitement or the fact that Danielle, Grandma, and Mom knew that this was the first trip that they could drink. Usually dehydrate is the name of the game as my Dad earned the infamous name of

Captain PeeNomore:rotfl:

We didn’t stop driving to go to the bathroom (except for Mom). It was interesting and kinda fun being carried in a moving car. Going to the bathroom in a driving, jostling car was a unique feeling that led me to exclaim, “it feels like I am surfing.”:lmao:

I think I’ll insert my journal entry from 2:48:

“We are crossing the first mountain pass-tehachipi. I’ve crossed this pass before so I am not concerned. There is a nice big window across from me (I am sitting sideways) and I have probably the best view I have ever had while driving. The sound of the engine switching gears is a little unnerving. I can tell that the RV is working. The desert mountains are nice. Sloping hills dotted with green shrubs are in view and ever so often I can see the mountain. I wonder what other Creations of God I will see on this trip? Ooh, I looked up to a beautiful view layers of land all stacked up and leading to a stunning mountain. I think this trip …

Yikes the oxygen alarm just went off! :scared1:

Schew Dad fixed it.

Grandma & Danielle broke into a rendition of ‘I love the mountains, I love the rolling hills’ as I was saying I think this trip is going to be good for me. Maybe I’ll get my sense of adventure back. I like the sides of the hills with the rocks…pretty, pretty.”

Sadly, things didn’t remain light hearted. It seemed like someone was always asking Dad for something-food, water, bathroom, oxygen, ventilator, breathing treatment, entertainment, positioning, etc. It didn’t help that he was tired. So, his temper came through loud and clear. As if that wasn’t enough we had a few adventures.

We had more generator adventures when we pulled off to get gas.

Tip: if the sign after the exit points to a ghost town, the regular town probably doesn’t have much in it. :confused3

While we were pulled over, dad started heating up the preprepared food (Grandma had cooked and frozen spaghetti, hamburger stew, homemade chicken noodle soup, and minestroni stew). And with the microwave, overhead air and concentrator on, the generator blew.

No oxygen and 3,000 feet and no way could we keep going without oxygen.:eek:

Dad, THE man, quickly reset the generator and we made a note not to run all three again…. Sigh of relief.

I saw some more pretty sights. Lots of the hills and mountains had small black rocks peppered on top. At one point when the sun was setting, a shaft of light was piercing through the cloud all the way to the ground. It was beautiful. As we got closer to the desert, there were these strange combo cactus/trees. They had tree trunks but instead of leaves there were spiny things. I believe they are called Joshua trees.
Joshua2520Tree2520National2520Park2.jpg

(not our picture...off of google)

We made it to Needles, CA the goal. But since we got there late, we slept in a not so nice “hotel.” Travelers Inn. Pfff. I would not call it an inn. Our rooms were on the second floor up an elevator. Unfortunately, it took Dad quite a while to unload.

One room (my room) had a really pathetic air conditioner. Needles is HOT. The whole drive was hot. The area of the RV where I was sitting was 89*. Mom decides to restart the air conditioner in the hotel room to see if it will help. She goes to turn it back on…

Nothing. :headache:

Oh no.
Even in the winter we sometimes have to turn on the air conditioner at night because the oxygen concentrators are like mini heaters.

Mom calls the front desk.

They can’t fix it.

They will change us to a suite-no extra charge. For most people that would be great…but Dad just spent the last 4 hours unloading. It’s 11:30. We are tired.

Dad comes in. He is drenched in sweat, panting, weaving when he walks and says he feels faint-mom tells him the news. Dad despairingly says, “No! I am physically and emotionally exhausted, I can’t do it!” And starts to get emotional.

“I can’t do this!”:guilty:
And at that moment the air conditioner came on. Hallelujah.

I go to bed and fall asleep fast. I wake up when mom and dad are laying down and I overhear a conversation. Mom is emotional and apologizing to dad saying she should of never planned the trip and that she is putting too much as Dad.

Then she asks, do you want to still do this?

Dad says, yes, my children are looking forward to it. :goodvibes

Earlier in the RV while driving some lemons were bouncing out of a truck and mom ran over them. Will we squish the lemons of this trip and turn it into lemonade? Or will this trip become a lemon and squish our spirits?

Christamae

Question: Would shorter, broken up chapters be better?

Coming up: Trapped!

Crash, Trapped, Altitude Sickness-oh my!- Page 3, Post #36
 
Christamae,

What an amazing chapter! I love your writing style. Very descriptive. I can picture the 'scene' quite easily. :thumbsup2

So sorry things got tense - bound to happen though. If I ever found myself on a family trip that was stress-free I'd know I'd gotten into the wrong car. :lmao: You have all the extra challenges, equipment, necessities. I dunno how ye did it. You're amazing.

Really looking forward to more. Don't shorten the chapters. Write each one until it feels complete and you've had enough of writing. Don't worry about the word count.
 
Wow.

I just can't imagine all you went through to take your vacation! But through it all, your hope and optimism shine through.

eternaldisneyfan said:
“As the wonderful realization [of this trip] hit my eyes brimmed with tears and my heart with gratitude for my incredible family and the goodness of God…”

Amen, sister.

Looking forward to hearing more.

NM :flower3:
 
That was a great chapter. Loved it. Your dad is like "Mighty Dad", the whole family sounds like a blast.

I think the length of your chapters are great.
 
Hey, I know you! I've seen you in my Quest Magazine. I'm a fellow Muscular Dystrophy patient and Disney lover.

I'm looking forward to reading all about your big trip! Thanks for sharing it with us. :love:
 
I am soooooooo into your trip report. I agree with everyone else when they say you have a wonderful writing style! I can't wait for you next report!
 
Loving your TR the chapter length is fine :goodvibes: Your Dad is absolutely amazing!
 
:goodvibes Thanks for your replies and encouragement.

DebIreland: Thanks for your faithful following. I have some Irish in me and love the group Celtic Woman...Things did get stressful but sometimes the more difficult something is-the more grateful you are

Nicolemarie: Thanks for joining the journey. And for your compliments :hippie: I try to have an attitude of gratitude

IkeAndMike: Thanks for staying on the bandwagon :) My Dad is pretty mighty and my family interesting.

Jenand Molly::wave2: Thanks for hopping aboard. Yep, I was in Quest...I am sure you'll empathize with some of the unique challenges.

Mickey'sMainMami: Another follower-Thanks! And thanks for the compliments :)

Disneyjo: Thanks for joining...I have a limey :)

All right. Another detailed, drama filled chapter where we are trapped in the hotel will emerge Thursday April 26

:hug: to all my followers

--Christamae
 
What great writing - I could use a lesson or two or three or etc....
Can't wait to read more, don't keep us waiting. :surfweb:
 
mas6010: Thanks for joining

Day 2 & 3

I left off with a very discouraging picture.

Unfortunately things get worse.

Dad goes down to park the RV closer for loading. When he comes back up, he informs us that he had an accident. He clipped the edge of the awning. Their property is damaged and the RV has a dent.

100_0006.jpg


Then I find out that the elevator we used to get to up to the second floor is broken.

Which means we have no way to leave the lovely travelers Inn.
:eek:
We are trapped.

Great. :headache:

Poor dad had to haul all of our stuff up and down stairs.
100_0008.jpg


Dad gives the manager a talking to and thankfully the elevator is in use by the time we are ready to go.

Oh my heck, was it hot!! I am guessing 110 or 115. I felt like I was baking like a rotisserie chicken with meat that flakes off. Here is a picture of Dad after loading the RV:
100_0009-1.jpg


We discussed things as a family and decided that our goal of Albuquerque, New Mexico was too lofty. Because of our need to minimize our time at elevation, we needed to carefully check each cities elevation. We really shouldn’t sleep above 5000 feet. This mountain area rose and fell quickly. Winslow, Arizona had a similar elevation (4990). We called to make a reservation-early. And by noon we were finally on the road.

We decided to run the overhead air conditioner and fans. Much better temperature. Dad’s attitude on Day 2 was much better. He was cheerful and didn’t lose his temper once.

I was a bit nervous about crossing the mountains with the elevation. The sites were really pretty. I especially enjoyed the rock formations. Sometimes there were piles of rocks stacked so precariously it looked like they would topple with the slightest wind. Other places rocks of all different sizes were mixed with clay dirt. Arizona should be called the state of colored dirt. I saw dark purple dirt, maroon dirt, red dirt, and orange dirt. It’s a dirty state. :)

I handled the elevation better then I thought I would. The 4 liters of oxygen really helped. Danielle and I played lots of Disney Trivia. I thought it was a pretty good day. The mountains really bogged us down. As mom said, “slow and steady, steady and slow-stay in the right lane and away we go.” She also said, “that to get the RV through the mountain she had to point her toes like a ballerina.”

Driving the RV was a big challenge for Mom. She hadn’t driven at all since we moved to California and she drove the mini-van----- 4 years ago. Now, she was driving a 39 foot RV across the country. I think this picture captures her stress:
100_0013.jpg


Dad really can’t drive long distances. He falls asleep. And he was also pretty busy taking care of everyone’s needs.

We had a little trouble finding the Comfort Inn. The person on the phone gave us the wrong exit. Once we got there Dad unloaded pretty fast with the help off a luggage cart. At one point, he let go of the luggage cart to get some stuff from up front and the cart went careening into the street! Dad ran to get it and caught it. Schew.

We get into the connecting rooms…ooh nice. And aaaah -good air conditioning. Dad starts the equipment set up. Then things start to fall apart. Dad gets really emotional and breaks down. We now realize that Dad was suffering from altitude sickness…but at the time we were all pretty traumatized.

As I lay in bed, I contemplate how much pressure Dad is under daily. Knowing that he is the only one who can do things for us. How much he cares and wants to help. How much he gives. Before I go to sleep, I say a prayer with lots of thanks and asking for help for Dad.

Day 3

Well, we decided to stay in Winslow and rest. Everyone needed it. Looking back we should’ve delayed the trip by one day…Mom remapped the route. It was an unscheduled rest day and we didn’t make the goal yesterday…We will definitely be at least a day late-maybe two. Now, we scheduled a rest day during vacation. We also had two days of Seaworld planned but didn’t buy tickets. We do have options that still allow 10 days of Disney World (already paid for the tickets). Just some rehashing to do. I already thought that getting there was going to be hard. But even though I thought it was going to be hard-I thought it would bring us closer…and of course the end result---Disney!!! We are still going. The plan is to go to bed early (6ish for me & Danielle getting mom and dad in bed by eight) and up at 4. I hope the rest of the drive goes better.

Christamae

Coming up on April 28 (Saturday): We can do it...Convention??? and past trip reflection

Convention??? Keep on keepin' on- Page 4, Post #51
 
Can't believe the elevator was broken, good job your Dad had words :thumbsup2 You all will so deserve a wonderful holiday once you get there!
 
Disneyjo: Thanks for the response...My parents (especially my Mom) have learned to be persuasive and know their rights. It's a quality that I have inherited...:)
 
Okay, I drive EVERY DAY and I think I would freak out at having to drive a RV through the mountains! Kudos to Mom!!
 
Christamae!
My sista! Well, I am a little disappointed that I actually stumbled upon your TR before you told me you had finshed writing it. But so far, so great!
I am remembering now just how much stress bombarded its way into our first few days of the trip. I remember, on the rest day, without really realizing it, I started humming, whistling, and then singing "I Can Go the Distance".
I am on my way, I can go the distance...
I think that was the theme in the back of all of our minds.
The rest day was nice b/c there was actually some relaxation involved, but, for me at least, it was kind of hard b/c for most of the day I didn't reallly have anything to distract me so I kept thinking about all the stress we were putting on Dad and really questioning whether it was worth it. Mom reassured me, and that phrase kept running through my head...I can go the distance.... Also, I thankfully eventually got a hold of the remote so some laughs w/ Tim the Tool-man Taylor helped as well :happytv: .
Anyway, I'm starting to steal your thread so I will refrain from typing too much more. :goodvibes Kudos for the great writing. I already know what happens, and I'm still enjoyig it! :thumbsup2
 














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