BEEP BEEP BEEP, the alarm clock blared…and was silenced.
But not before I awoke. So I started ringing my bells (I wear bells as a way of calling because I can’t talk on the ventilator). I am the back up alarm.
My bells roused the crew and the break down routine commenced. Grandma is called to get up. I got up, dressed (throw clothes in suitcase), in my chair and started my Xopenex/Pulmicort breathing treatment and then my Pulmozyme. Danielle’s up and in the bathroom. Dad starts packing her ventilator, bed props, the monitor, and battery charger in the bin. Stopping briefly to put Danielle in her wheelchair. I must interrupt Dad to go to the bathroom. Dad starts on my hotel room while Grandma finishes Danielle’s and hers. My props, the other monitor, wheelchair battery charger, mike charger are all quickly packed. Then Dad moves onto his CPAP machine and Mom’s Bi-PAP. Grandma comes over to get Danielle’s pills from the medicine bin.
While Dad is packing, Mom quickly applies make-up to herself, me, and Danielle and brushes hair. Now the bathroom bag can be packed.
The three foam pads to soften hotel beds are rolled and secured with a belt. My vent stand and oxygen concentrator are unplugged and the cords rolled. Danielle goes to the bathroom. Dad retrieves two rolling carts and starts piling things on. Bottled water from the fridge is thrown into the ice chests and Grandma goes to get ice—
The machine is broken. We’ll get some at the gas station.
Dad takes the first cart and Danielle’s ventilator/oxygen concentrator cart that was made at home-panting and sweating from his superhuman speed.
Grandma helps Mom in the bathroom. Grandma starts loading the second cart. Dad comes back and reloads his cart. They both go down the elevator.
Grandma comes upstairs about thirty minutes later, visibly upset.
“I’m an idiot, I shouldn’t have come.”
“Don’t be silly, Mom, what happened?” Mom says.
“I was trying to get Christamae’s ventilator stand off the cart and it fell and something broke.”
“What broke?”
“I don’t know but Danny (Dad) said it was expensive…I am no help at all, I should’ve stayed home.”
Now, if you will review the above section, I am sure you’ll see many instances of Grandma helping and even if she couldn't help-we'd still want her to come!….
“I am sure it will be okay, Mom (Grandma), you know how Danny (Dad) is when he’s in a hurry.”
About this time, Dad comes back upstairs, “Are we ready?”
“I think so…Mom (Grandma) said something broke on Christamae’s ventilator?”
“Yes, a cord bracket…can we go?”
“What does the cord bracket do?”
“It holds the cords in place…We need to get on the road, can we talk about this later? (sounding very irritated)”
“Does the ventilator work, is it functional?”
“Yes! Now come on, we have to get out of here if we want to make any time!”
“Alright. I’ll check out. Mom (Grandma) can get breakfast (continental). Don’t forget the suction bag.”
And after a quick scope of both rooms, we head to the elevator. I wait inside while the last pieces of luggage are secured. While I am waiting, a teenage boy says, “Would you like me to open the door for you?”
I shake my head no and smile (on the vent, can’t talk). A few minutes later a middle-aged man asks me the same question and I give the same reply.
I thought this was very nice. I, for one, appreciate a helping hand. I know some people with disabilities get offended if someone opens a door or asks if they need help. But I don’t think this offer could’ve offended anyone because they kindly, and respectfully asked me if
I wanted their assistance.
Anyway, Dad gets us and after about twenty minutes Danielle and I are tied in and Mom is secured in the driver’s seat. Then Dad directs Mom to the gas station, pumps gas, gets ice, helps Mom out of the gas station and we’re off…
Three and a half hours after we got up.
The first thing I notice is patches of blue grass. Pretty cool. I knew Tennessee had blue grass (I’d seen it) but I didn’t know that Texas had blue grass. I like. The blue grass would be the most interesting thing I would see for awhile.
To me, Texas was full of wide-open boring spaces. Granted, it was only the panhandle, but it was boring. And the roads were bad. Bumpy and rough-Oklahoma wasn’t any better.
I lived in Oklahoma (Sapulpa) the first sixteen years of my life. I didn’t really like it. I hate tornadoes. I hate the weather. I hated the inaccessibility and treatment of people with disabilities.
A prime example:
My cousin Shayna worked as an usher at Tulsa Reparatory theatre where the manager instructed her, quite simply, that if there was a fire she should
detain all the disabled so that they wouldn’t get in the way of people escaping. The healthcare was frustrating-HMOs are evil!!! But I did like the people. I left some very good friends. Competitive speech was awesome-I can honestly say I belong to the NFL:
National Forensics League
- and I enjoyed Jazz Choir.
Anyway, as we were about to cross the state line to Oklahoma, Dad got the camera poised for the welcome sign. We passed a tiny 5x3 sign that said Oklahoma…
And that was it.
I watched two movies because Oklahoma countryside really doesn’t interest me. Here's a picture of the movie set up. The laptop is on the bath chair and secured with trach tie material so Danielle and I can see it. You can see Grandma reading her scriptures.
Lots of farm land with plowed fields, red dirt (I do like that), various kinds of trees, and… mountains???! Pfff. Sorry more like big hills. Mountains are the things we crossed in Arizona and New Mexico.
The one part of Oklahoma I find beautiful is the sky. It is the purest bluest blue. If I tip back in my wheelchair and stare at that pure expanse I seem to lose myself in the pure blue…
It didn’t take too long to get through Oklahoma maybe 4 or 5 hours. Then we were in Arrrkayansawuh.
If you want to do a good strong southern accent- add syllables. And overemphasize r's. For example, Dawn is Dawahn. And never say the g on the ing endings: goin’, fixin’ meetin’, doin’, etc. Also throw around a classic phrase like Didja eat or Much obliged. You’ll fit right in
.
I was surprised at all the hills. The RV didn’t like them-but I sure did! Beautiful lush green rolling hills covered in trees
.
We stopped around Fort Worth and stayed in a Comfort Inn. Oy, the humidity! A friendly trucker gave us a weather forecast, “It’s supposed to be hotter tomorrow.” Oh, joy. It only took 2 ½ hours to set everything up (usually more like 4) and with the trucker’s thought on everyone’s mind-we slept.
Coming up on Friday, May 4: Attacked! And almost there!!
Attacked!! And almost there!- Page 6, Post #90
never heard of that! Also I totally understand getting lost in the blue sky, it's so relaxing just staring up at it isn't it, well when the UK gets blue skies 
