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Post Info TOPIC: Jesse update


RV-Dreams Family Member

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Jesse update


As we transition back to our sticks and bricks I wanted to post an update for our many friends and supporters in our RV-Dreams family. I don't get on the forum as much as I used to or would like as we are crazy busy these days but we love following your posts and Howard's Journal when we are able.

We're a little bit in the house and should be fully in sometime in the next week, or two. Our contractor, whom we love, and the sub - tiling guys - are doing an awesome job. They told us we could start moving in yesterday at 10:00 am, that the baseboards would be painted and replaced by then and tiling in the main living areas, guest bath would be done so I scheduled a new to me cleaning service to arrive at 10:00. The construction dust and dirt is everywhere, in cupboards, windows, sills, ceiling fans, shower, etc. We were to get access to two guest bdrms, guest bath while they closed off master wing to finish tiling & painting. (That would work for us in the interim.) The cleaning crew was an hour and a half late because of a "flat tire", the tilers and baseboard guy were installing everywhere, pkus two of Jesse's friends stopped by and took him to lunch. It was chaos. I walked around in a daze. I'd start something then get called somewhere else. PJ kep reminding me I didn't have to get it all done in one day. After about an hour and a half the two cleaning guys left "to buy a mop" and never came back! (No I dadnt paid them!) So Jesse's sister decided to run and get a mop while I tried to put the vacuum we had in storage for a year and a half back together after cleaning the brush. I broke it, but fortunately Bill & Dale fixed it. We eventually got most of the vacuuming & mopping done, had a beer and a couple of glasses of wine and then back to the RV's for a late dinner, along, hot shower and we collapsed in bed.

Jesse can still stand, but very unsteadily, so is in his amazing power chair as much as possible and needs to be full-time these days. We leave it in the van for now because it obviously can't be used in our RV! 😄 it has amazingly sensitive controls that can recline, turn on a dime, and helps him conserve energy which is huge now as any daily activity is exhausting. His hands are nearly useless as they are mostly in a cupped position but he can still proudly hold his beer bottle. Getting it or food up to his mouth is another story as his arm strength is less every day. He gets frustrated occasionally when he can't help. This is a guy who did it all like so many of you, but he is so accepting and non-complaining about ALS. We were hysterical when out to lunch the other day as he was trying to pick up and eat a cheeseburger. His sister, PJ, was watching him closely as she was creatively thinking how/what might make this process easier for him. Because he can move his hands down easier than up, she thought he might tie a small cord to one hand, string it around his neck and pull it down with the other hand and therefore lift the opposite hand to his mouth. As we each envisioned that "look" we started laughing and couldn't stop. Jesse figured he could modify PJ's idea by adding a ring to each end of the cord, hook it over his thumbs and could eat with two-handed! There were two couples at a nearby table that were uncomfortable with our hysterics at this poor handicapped guy. 

That at brings me to the important subject - our RV-Dreams friends. We were fortunate to have Steve & Diane, Pam and Red, Dale & Ruth in our area last week. Bill and Linda stopped by last month. These amazing people are beyond loving, supportive and accepting. They just go with the flow, share laughs and tease Jesse as they always have. He loves every moment with friends. Dale and Ruth had to extend their stay locally because of rig repairs and as crazy has their two weeks have been work-wise, they've been there in big and small ways. They arrived at the house yesterday afternoon and just dove in with smiles, Ruth recleaning the bathroom "done" by the crew. They also brought lunch for today's "furniture moving" crew. They are very aware and unhesitating in assisting Jesse with anything and everything. We feel so blessed with friends and family like this.

i'll try to occasionally post updates but anyone who might want to follow (and you don't mind my politics 😄)  I post somewhat regularly on FaceBook. I am Sherry Haddock Collins on there.

Sherry



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RV-Dreams Family Member

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Sherry, you and Jess are such an amazing and inspirational couple. Our hearts and prayers go out to you both. Thanks so much for the update. God bless!

P.S. What a love story!!!



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Sherry,

Our thoughts and prayers are with both you and Jesse.  It can be amazing what the right "attitude" does for one's happiness.

Terry



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RV-Dreams Family Member

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Great to see this update! Your love and laughter are heartening as you tackle this new adventure. I can only imagine the other patrons at the restaurant.....so many just don't get it The RV-Dreams community is so wonderful - I'm glad to know that so many are able to help make a difference in you and Jesse's lives.

You're certainly in the right spot as this newest cold front takes on the rest of the country

Jodee

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I, too, admire your strength and positive attitude!

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Bill and Jodee wrote:

Great to see this update! Your love and laughter are heartening as you tackle this new adventure. I can only imagine the other patrons at the restaurant.....so many just don't get it The RV-Dreams community is so wonderful - I'm glad to know that so many are able to help make a difference in you and Jesse's lives.

You're certainly in the right spot as this newest cold front takes on the rest of the country

Jodee


 X2.  It's weird but one can almost feel sorry for those patrons that just just don't get it... heaven forbid this should happen to them, they would be the wreck rather than learn what it is to have such grace.  We are lucky to have met such a wonderful couple of "dreamers" that shared not only the best of their experience but that intangible quality we can all learn from.



-- Edited by biggaRView on Sunday 16th of November 2014 04:49:53 PM

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So glad to see your update Sherry. I think of you and Jesse often, my brother -in -law lost his mother to ALS. It's a hard road to go down, but your positive attitudes will make it so much smother.
Keep the spirit, we all love you.
Hugs, Ann

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Think of you guys often. Appreciate the update and nice to see you have such a support system!! Hugs and prayers!!

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We had a great time at the mini reunion. Lots of laughs and fellowship. Thanks so much for the invite.

Red and Pam.

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We had a great 3 week stay in Cottonwood with you guys! Not happy about the rig repair that delayed our departure but in the end we were so happy to have another week and actually be blessed to help you out Friday afternoon and Saturday.   In the end, it definitely did not feel like "work" we were having way to much fun for that to be work!

We truly were blessed to share in all the laughter, especially when we moved one table into the house and then back out the garage. Sherry just proved that yes, women as still entitled to change their mind and yes, furniture rearranging is an art, not a sciencewink

Can't wait to see what PJ rigs up to help Jesse eat his hamburgers, just quit making him laugh right in the middle of dinnerbiggrin 

Looking forward to coming back through Cottonwood on our way north next spring, you just can't get rid of ussmile



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Wish I could have been there and have med you both. What courage, strength and positive words! Wishing you both the strength you need to continue on, my prayers be with you always. We kind of get lost in the shuffle of living but our thoughts of

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But our thoughts will stay in memory forever!

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Awwww, you're all so awesome with your loving and supportive words. What Ruth didn't tell you is with all the friends helping and wondering what to do next, I asked that a unique table and chairs that we had temporarily stored in the garage be moved into the house. She and Sharon did it, which meant down the side yard - because it wouldn't fit thru a doorway - up over a fence and thru a patio door in the back. Once there with all the other furniture and trying to envision Jesse moving fluidly in a wheelchair thru the living areas I quickly determined that it was getting too crowded - so back out the patio door, over the fence and down the side yard to the garage. Poor friend Ruth was grinning and cheerful the whole time.

I have since managed to "break" our dishwasher and Keruig but both are working now.

We went to Prescott to the VA on Monday to learn and pick upmJesse's Tobbi, an eye-control communication device. Thank goodness he's very computer literate as this thing can do Internet, phone, communicate and control the TV. Now, if it could only bring him a beer!

Friends that were iin town, you got out just in time! PJ's water hoses froze every morning this week, while we're nice a cozy in the house! Crazy weather everywhere!

Sherry

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Our "Rolling Rest Home" 2013 Trilogy 3650RL dragged by a 2005 GMC Sierra 4x4 Diesel Dually -SOLD

2015 Casita Spirit Deluxe 17 on the way.

Kids: Paris (AKA Kitty)  & Sadie



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Sherry -

As I read your post today (I know, I'm a little behind) I was reminded of how much these "funny" moments will mean to you in the future. My brother had ALS (sadly, he passed away in March) and we had many of these times. Even though he couldn't speak, or do many of the physical things he wanted, he retained his own personality and sense of humor right up until the very end of his life. I think of one time when we were all in the ER of a local hospital with my mom (another tragic event in 2014 - boy am I glad 2014 is over!) when my brother had to go to the bathroom. My sister-in-law and I took my brother in his wheelchair into this very tiny (supposedly handicapped) bathroom behind the nurses station. He couldn't stand on his own so we had to transfer him to the toilet and back. Well.... the space was just barely big enough for all of us to fit in there, let alone accomplish this task easily. We banged into every object in the room about 25 times, must have sounded like a herd of elephants! And of course, the entire time, all three of us laughed like idiots! After about 15 minutes, when we were all done, we paraded out single file past the nurses station. The looks we got were priceless! My brother was at the front of the parade in his wheelchair, all smiles! I'm sure he was entertained by what all of the people must have been thinking! Remember to cherish every moment that you can. Don't forget the even though Jesse's body is failing, he is still in there! The best gift you can give him and yourself is to live the life he has to the fullest. I hope you, Jesse and your family have many more memorable times in 2015! Good luck to you all.

Judy

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Judy,

I loved your description of the bathroom trip in the ER! Trying to imagine the sounds of the three of you banging around in there and am laughing out loud.

We went to the Prescott VA Hospital Monday to meet the new department doctor for Jesse's check up. We were a caravan: my Cerebral Palsied daughter in her wheel chair and quad cane, Jesse in his power chair, and thankfully ,Jesse's sister PJ who is here to help pushing Joan's chair. We were all in the exam room with Jesse and he told the doc, "that's my posse!"

Happy New Year everyone and thanks for sharing Judy!

Sherry

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I don't know where I'm going but I'm on my way. - Carl Segan

Our "Rolling Rest Home" 2013 Trilogy 3650RL dragged by a 2005 GMC Sierra 4x4 Diesel Dually -SOLD

2015 Casita Spirit Deluxe 17 on the way.

Kids: Paris (AKA Kitty)  & Sadie



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Stay positive Jesse! So far we are beating our maladies. God is good, some people are crazy! We are survivors, savor every
Breath we take! Told someone the other day, If I lose my sense of humor, I will lose the little health I have! Have the best 2015 that you can! 😁

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Sherri thanks for updating us. I love your politics btw..but more importantly we have the sme sense of humor and I regularly laugh at the things you share. Wish we could have spent more time together and can't wait until we are driving by and can make a stop!!

Trace



-- Edited by Lee and Trace on Saturday 3rd of January 2015 06:37:35 AM

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