Friday, February 19, 2010

It's All About How You Say NO!


Yesterday, I was judged. A committee board judged my life based on a piece of paper.

This organization is a great organization, they help many and have helped us before. So we submitted an application to ask for some more help with Joey's Stem Cell therapy. We have to write our financial responsibilities down on a 2 page application. Then it is taken to the board for review. Well they denied us. I wasn't mad that they denied us, especially because they did help us once before. I was mad and pissed off on their reasoning and their response. They just need to know the proper way to say NO! Here is what they said:

Julie after reviewing your case with board of directors yesterday, it is there determination that you and Jeremy should do more to reduce your monthly bills, ie get out of your house payment motorhome etc which would free up your income for more of the medical expenses. The purchase of a 43K dollar vehicle this month etc did not help, I am sure that was a van but selling the motorhome to cover that might have been the way to go. I am sorry to inform you of this information and wish you and Jeremy the best.

Here is my reply:

Well thanks for trying. I figured your board wouldn't understand. Most people don't understand what it's like to give up all you have to take care of your disabled child and try to keep life fairly normal for your other kids that were affected by this accident.
So getting a job, selling our rental property and two of our cars, and holding a fundraiser just is not enough? Also the new car, which is a handicap accessible van, my father bought for us.
I'll pray for you all. Thank you for your help.

The person in charge of responding to the applicants needs to learn to say "Sorry you have been denied". Thats it, nothing more. I also can't believe that a group of people can judge my life on 2 sheets of paper listing my financial responsibilities. At least call us in front of the board and talk with us in person. URGGGGGGG! Ok, thanks for listening I'm over it now.

On a happier note, during Joey's behavioral therapy, which happens 5 days a week 2 hrs a day, Joey did awesome. The first thing done when the session starts is they sit him up and time how long he can sit for. Then they will stretch him and will sit him again. His average sitting time on the first sit is about 12 sec. His average time for the second sit is about 20 seconds. Well yesterday he decided to blow us away. The first time he sat for 40 seconds. Also during these 40 seconds, he began to fall over and so he put his hand to the side to stop himself. That in its self was HUGE. The therapist and I were beaming and jumping out of our skin. Well it gets better. The second time Joey sat, he sat for 2.35 minutes. Yes that's right, he sat for 2 minutes and 35 seconds. Everyone started talking to him and he was looking around and he just loved it and sat and sat some more. It was awesome. Well I knew he could do it because his PT says he does it all the time and school teacher says he does it a lot also, but this was the first time I saw him do it. I'm so proud of him. Way to go JOE!

Well that's all I got for now. Best wishes to everyone.

5 comments:

Unknown said...

Julie

I am sorry that you were denied. Everything you said was perfect. You and Jeremy trying to keep your life as normal as possible for the rest of the members of your family etc. is exactly right. I often wonder if these people walked in your shoes just for one day if they could somewhat understand. I somehow doubt it. No one will ever understand that until they have experienced it!!!! Your strength and determination are just amazing!!! Michele Romas Abdulaziz

Mrs. Dan said...

WOW. That was a classless and tasteless denial. Even a denial with no explanation would have been better than what they said. I'm glad they help people, but even when you decide not to, they can be a little nicer about it. Don't let it get to you.

WOOHOO about the sitting up and defensive catch. That's crazy good. You guys must have gone crazy. I'm sorry I missed it!

See you in a couple weeks. :)

Mrs. Dan said...

BTW, it looks like the responder from the foundation has spelling disabilities. :)

Anonymous said...

everytime i check in your little joey is doing better and better. keep up the good fight.

prayers always being sent to you from las vegas.

mary (friend of cousin gayle)

Gayle said...

Great picture of Joey - he looks happy and strong!!!!!!

Love,
Cousin Gayle