Visit Rebekah's Page to get updates, read messages and send messages to Rebekah and her family through comments. This is a public "diary" of a family whose little girl started a battle with inoperable cancer in April 2005. In December 2007 our house burned down. And in September 2009 Mommy was diagnosed with a terminal disease (a genetic form of ALS) that took her to Heaven in July, 2011, leaving Daddy and two young girls to make it on their own. Over several years of ups and downs, you will get into our hearts, minds and souls as we share joys and sorrows. It can sometimes be very difficult to read. We hope it is also uplifting. Please find joy in what you read here.
____________________________________

Wednesday, November 11, 2009



Handicapped Rants

Right now we are sitting in one of our most favorite places on earth, Sunriver, Oregon. This beautiful home that we are in has been an absolute retreat for us from the rest of the world several times since coming here for the first time in the middle of Rebekah's treatments. Mommy Debbie and her family own this home and let us share it's joys and healing powers several times a year, something for which we are absolutely grateful!

Since it has been a while since we posted about the progression of mommy's als let's just jump to the fact that she needs to be in a wheel chair most of the time that she is out of the house now. (See a newly inserted "old" post a couple down from this one - November 6th.) She isn't always, but needs to be. On the way over here to Sunriver we stopped at a restaurant to give a break and use the potty. Daddy ordered a few snacks and mommy headed out to the van with the girls. While daddy was standing in line waiting for the food Sarah came running in the door and said "Daddy, mommy needs your help she fell down in the parking lot..." Sure enough mommy was laying out next to the van on the ground on her knees. Daddy helped her up and we made sure she wasn't bleeding (on blood thinners and all.) It was a bit scary but daddy went back in, got our food, and we were on the way again.

Today we went out "shopping." Window shopping mostly but shopping none-the-less. One of the places we stopped at was a mall in Bend. ADA requires that handicapped van spots have 8 feet to the side and an uninterrupted cross walk from there all the way through the parking lot and up onto the curb. The ones at this mall do not qualify and mommy had to wheel through the lot in her chair where several cars, all in a hurry to get somewhere I guess, wouldn't stop for her, came too close to her, etc. It was frustrating and it was difficult for daddy to refrain from making a big deal about it.

Once in the stores the difficulties continued. Mommy's wheel chair is a mid-wheeled model and quite narrow. Much more narrow and far more maneuverable than a standard wheel chair. But most of the stores had aisles way too narrow for her to be able to get around in. I guess that just don't care if handicapped people shop there. Ross' was one of the worst. At one time mommy as backing out of a side aisle into a main aisle with very little space and some rude lady looked straight at her and walked right behind her taking up the little bit of room that she needed to turn around. The lady clearly saw her and just plain old didn't care.

Then when checking out at Ross' mommy went to the only checkout that had a counter low enough for her to be seen over. Right over this checkout there was a sign that had the handicapped symbol and said "This checkout to remain open at all times to assist our customers with disabilities." Mommy politely waited quite a while being ignored by the 20 something clerk that was 5 feet away checking out other people. Finally the clerk said to her "do you have a return or something." And when mommy said no, she wanted to buy something the clerk said something like "well you should come to a lane where there are cashier's then." Mommy almost left but bought the socks she needed and then spoke to a manager who didn't provide much more courtesy. If you are anywhere around Ross' in Bend, Oregon stop in and let them know what you think about their behavior; it wouldn't bother us in the least.

After stopping by a few others stores we noticed a place called "Advanced Mobility." They build vans, lifts, etc. as well as modify homes and businesses for handicapped access. Daddy went in and talked with the only guy in the store about our problem - getting mommy's wheelchair in and out of the van. It is doable with the ramps that daddy built but just barely given how high the van is. Daddy asked him if there were any other options short of completely rebuilding the van and, unfortunately, he said no. Daddy then talked to him about how to make our ramps less slippery and he said "I have just the thing for that." He took daddy into the back room and came out with a partial pale of traction paint. He said "we used to use this a lot and it will work real well on your type of ramps but we don't use that kind anymore. Take this home and use what you need and anything you don't need bring back whenever you are in town." He even gave us a roller to apply it with. He wouldn't let us pay him a dime for it but we did buy a 32" grab bar to install in one of our bathrooms. Funny thing is that most houses have studs 16" on center but most grab bars out there are 18" or 36". That makes it really hard to actually get them on a stud on each end as is required! Anyway, as bad as Ross' was, Advanced Mobility was AWESOME! Let them know too if you feel like it.

We also spent a little bit of time looking around to find a place for mommy to have some blood tests done on Friday as we will still be here and her doctor is really worried about her blood levels with the thinners she is on. With the recommendations of some friends we think we have just the place.

It is somewhat bitter sweet for us to be here as we are concerned it will be our last time. There are quite a few stairs to get to the main living level and that is obviously difficult for mommy. As it stands she is getting up and staying up there. The girls are in rooms downstairs and daddy is doing all of the duties for them plus carrying all of our stuff up and down. But it is all worth it for us to be able to share this wonderful place yet again. THANK YOU MOMMY DEBBIE AND DADDY BRIAN!!!!!

3 Shared:

At Wednesday, November 11, 2009 9:20:00 PM, Anonymous Darlene Left a thought...

"In everything give thanks. For this is God's will for you in Christ Jesus." Praying for you that your gratitude for the grace and mercy of God will reign in your hearts. He is all we need.

 
At Thursday, November 12, 2009 6:05:00 AM, Blogger Debbie Left a thought...

There are tears in my eyes. Tears for the pain you went through yesterday at Ross and tears for the joy I know Sunriver can hold.

 
At Thursday, November 12, 2009 11:47:00 PM, Anonymous Anonymous Left a thought...

Horses and snow ,what fun!
Still praying for ya all daily.
BTW, I sent a note to the Ross Store Corp office, short to the point but not mean just a firm lashing ;)
Maybe they don't want that image and will educate some employees, it don't hurt to try...
Miss your post on 'the board' Scott, take a short break and drop in sometime...
BTW ,gonna be a G-pa again (youngest boy and his new bride) :)

Take care and God Bless,
Burley

 

Post a Comment


Thank you from Rebekah...

Back to Rebekahs home page...