so excited yet so shot

So much is happing and so fast.. Sue is home for a bit, with my DJ!! and so happy days.. Kate been so busy with her friend that she has not been around much. it ok ,, Landon is sick again.. :( bad cough and fever... back to dr and than off to set up for the benefit..

God be with us.. let us show your glory and praise your name, thank you for all you have give and all your blessings!

JDH IS INSANITY

yeah.. for real it is insane.. mood swings, crabby, and sleeplessness... and that just me..hahaha
I am at a lose i cant seem to find that middle ground with Kate..
I so worried that she is shutting her self down.. she seems to pull away more and more.. everyday..
I worry and yet I have to let her be Kate and let her live... it so hard.. i miss her hugs and her giggles..I wish i knew how to make her smile.. but i have to leave it in Gods hands.. because i cant handle this without his help.. and he gives me so many JHD families and loved ones to help me.. thank you to all of you!

i thank God..

With out God i could not do this.. God be with Kate..and help me to help her.. please

1Paul, and Silvanus, and Timotheus, unto the church of the Thessalonians which is in God the Father and in the Lord Jesus Christ: Grace be unto you, and peace, from God our Father, and the Lord Jesus Christ.

2We give thanks to God always for you all, making mention of you in our prayers;

3Remembering without ceasing your work of faith, and labour of love, and patience of hope in our Lord Jesus Christ, in the sight of God and our Father;

4Knowing, brethren beloved, your election of God.

5For our gospel came not unto you in word only, but also in power, and in the Holy Ghost, and in much assurance; as ye know what manner of men we were among you for your sake.

6And ye became followers of us, and of the Lord, having received the word in much affliction, with joy of the Holy Ghost.

Wow... i stirred the pot

So what a day.. and apparently I stirred the pot with my fundraising lies?? post .. I am soo sorry if I upset anyone.. Our Goals is to raise awareness and money for a treatment for JDH and HD..
I totally appreciate HDSA and all they do for awareness.. My problems is with the amounts..and i understand that u can earmark money for research.. which is great.. I guess I look at that the number one thing that should be done with the moneys raised is for research.. the more money the better the research.. 2 we should be taking care of our families on a basic level.. Asking them if the need food.. gas to get to dr's helping them find a lawyer when ssi or ss is denied.. yes I believe it can be done.. we love each other can Know what each of us go through with our loved ones and with ourselves..
I know that I have been blessed that my family has helped me to get Kate to and from Iowa city.. which 5 hours one way.. but i also have read and know of parents that cant afford to bring their kids to center of excellence because of cost of travel and lodging.. no to mention they cant afford the time off of work.. Why can we help them out.. to me that is more important than paying for t shirts to be given out at our walks..
I know it seems i am upset.. but i am not.. I just feel that we need to really look and ask our families what they need!

Blessings

So I received a phone call today.. From beautiful person named Judy. She and her husband Scoot are donating the drinks for Kate's Benefit. I cried.. Because this women as dealt with some pain... Thank you so much for u r love and prayers Judy and Scott D.
God is working in so many ways thru this..i see it everyday..

On another note. I am still researching where the monies are going for the HDUS ... Landon still has his money from the last fund raiser yet and I am waiting to see where to send it... well that he raising more for the JHDKIds.. he told out youth pastor that "i have to protect My sissy and all the other kids from JHD" I cried.. I want that faith the faith that will give me the peace that God will take care of it all and that Kate and all the other families will be ok..
God thank you for giving me Landon so I remember it all in your hands..

O God listen to my cry! hear my Prayer. 2 From the ends of the earth I cry to you for help when my heart is overwhlemedlead me to the towering rock of safety for you are my safe refuge

help for us! jhd and hd

We need a place to go to hear us... and guess what.. they are not hearing us in New york.. so we need to shout it from the rooftops!!

The HD View! - http://www.blogtalkradio.com/help4hd/2011/10/03/help-4-hd-the-hd-view-premier

http://jhdkids.com/



http://www.faithandhopesociety.org

http://about.me/WeHaveAFace

http://wehaveaface.org/Home.html

http://www.deshalamar.org/The_HD_Relief_Fund.html

All place to go to find help for HD and JHD

Fundraising lies??

So the HDSA collects money from the community in walks and other fundraising events, said that the money goes to research. What little of the money goes to the research part, but now with CHID doing the research... what does the HDSA do for people like us who are in need? When are they going to tell us what they are doing for their "families", the people who are suffering now?
The 7% allocated to research in the 2009-2010 Annual Report from the HS..which means out of every $100 sent to hdsa will only $7 be used for research and the $93 go to other parts.why such a low amount for research? This that not the HDSA purpose. This is what we need for a cure. Also if everyone says they want their full $100 donated going to research will that be done? Won't that then exceed the 7% allocation. What does hdsa do then??
They have lied to the community since 2006 and state that they do give most of the money to research.But their numbers show different!

ANger.. yep .. it is funny how money and loved ones can cause that so easily.. I cant understand why more money is not going in to research??

Tears for the people who we have lost!! and for those who cant see to see it from our view!! tears
my fund raising efforts are for the JHDI and faceless no more...

this their own report.. check out the pie chart : http://www.hdsa.org/images/content/1/5/15081.pdf

call them 1-800-345-HDSA (4372)or 212 242 1968

write them
National Office
505 Eighth Avenue, Suite 902
New York, NY 10018
212 242-1968
hdsainfo@hdsa.org


God- help me to accept the things i can not changer. AND THE COURAGE to change the things I can! amen

go from here

So where to go from here??
Keep raising awareness.. I cant believe that a dr actually thought that Huntington's Chorea and Huntington's Disease were different and one was genetically passed on and the other was not!! wow..
WE NEED MORE PEOPLE SPEAKING OUT!
DO NOT BE ASHAMED.. it makes me so sad when i hear people say well we didn't talk about cause we just hid from it.. how lonely and scary.. for the hd positive and the other family members..

Kate says when the time comes she would like to place in a "home".. but there is no way in hell that i will bring her some where far away.. actually i don't think i could be strong enough to bring her any where.. Those family that do fine placement. they are brave, the choices they make are much harder than what anyone knows!.. me welll not so much..

Also found out to that if a child is disable before 18 than they collect off the parents social security.. Check this out guys it may bring so much needed extra cash to you instead of the ssi amount.


23Then shalt thou walk in thy way safely, and thy foot shall not stumble. 24When thou liest down, thou shalt not be afraid: yea, thou shalt lie down, and thy sleep shall be sweet. 25Be not afraid of sudden fear, neither of the desolation of the wicked, when it cometh

learning

this is a wonderful site: learning and helping: anyone with HD/JHD
The_HD_Relief_Fund

www.deshalamar.org

I hate learning more about JHD... yet I love talking to people. and learning how i can help..

Thursday are are hard for all of us.. Shawn has OT in Sioux Falls and it is always busy and insane and often times over whelming... Mikey came with.. Him and Joe had me giggling just like they used to... Crazy teenage boys.. :)
Kate was home most of the day.. I learned today that I cant ask her to watch the bulldogs.. I not sure if she forget or what.. or if she she doesn't want to..I have no idea..

Her boyfriend called to Iowa city and learned that I wasn't lying or just being a over protective mom.. I think is scared him.. But he says he wants to do what he can for her.. I am glad he called.

Kate played with Gabe this am.. hearing them two giggle today warmed my heart..

it is funny how i get frustrated with her.....but i guess that is being mom..

this is a wonderful site: learning and helping: anyone with HD/JHD
The_HD_Relief_Fund
www.deshalamar.org

Philemon 1:3 Grace to you, and peace, from God our Father and the Lord Jesus Christ.
I thank my God, making mention of thee always in my prayers,