I wake up some days and just lay there for a momnet before my world get going.. I pray in those moments... I pray for Our Lord's strength..
|Kate and Baby Levi(my little nephew)!!|
|Gabe being Gabe|
|Kate and Ella opening Christmas presents!!|
|Gabe and mommy|
We rasie money for research,.We keep hope and faith in our lives. What else can we do??
I have seen so many families struggling worse than we ever have or ever will.
I hope this all makes sense... I tend jump from one thing to another..
There are things that make me mad and make me want to scream from the rooftops...
1. I HATE HUNTINGTON'S DISEASE!!!
2. I HATE FEELING HELPLESS WHEN MY CHILD HURTS.. ANY OF MY CHILDREN... FOR ANY REASON!!
|shawn and mommy.. Shawn is not so happy|
My husband and kids mean so much.. they make me smile, they complete my life.. I thank God for them everyday.
|Kate eating at IHOP.. when we found out she is having a baby girl!!|
I can tell you I get frustrated on wading thur all the information about JHD and HD, the trials, what is true and what is wishful thinking, and most of all the lack of reseach being published and put out to people. I get upset with all the policictes of the research and people arguing with each other... WHY?? becasue we are all fighting for the the same end resulte... a treatment for JHD and HD!!! I get soooo angery about that. We should be able to come togather and rasise awarness and keep the funds up... But instead I hear and see people with so much confusion and 1/2 truths.. I wont go into deatil.. It just insane to think about other groups( cancer, heart austsim, all wonderful grups) and yet we are so closed up... Even to the point of pushing away people who suffer from HD.. What do i mean you ask...
I mean this....1. it should not matter if u are hd or jhd... 2. whether you have been tested or are at risk, showing signs or gene positive.. U should NEVER be afraid of talking to people and hiding is not a optioon.. I I fight not just for Kate.. But for anyone who has felt the effects of HD/JHD!! I understand that HD was not talked about so much in many familes.. that so many people hid becasue the behaviors.. So can we keep the momention of so many that have fought to bring hd to the "main stream"
to name a few
1. Jane Mervar and her GIRLS! jhdkids.com
2. Gene Veritas and his wonderful BLOG www.curehd.blogspot.com/
3. Katie Moser -firstgiving.com/fundraiser/katharine-moser
4. Button boy, Landon Hansen http://www.facebook.com/ButtonBoys
5. James Valvano- wehaveaface.org
6. Rebecca Rose and her granddaughter- Kathleen
I know there are hundreds of others.. all fighting to raise awrness and fight for loved ones..
I know we have hope, but we need people to scream so that huntington's is as wide know as cancer!! Please forgive me if I did not name you. U are not forgotten and U ARE APPRECIATED!!
So when peopl look at me and say how can you talk about what is happening to your daughter with out breaking down?? I say because She is LIVING.. she is fighting.. and by TALKING ABOUT JHD AND HD it the only damn way I can fight back...
I am tired of people saying "yeah, that needs to be done" and waiting for some else to do it...
Is JHD and HD sad?? WELLLL DUH.. yes it is.. but there is always hope ...
We prepar for war but we pray for peace!!
So i am done fussing for now... I am frustreated at what read at times at how SLOW it seems the research is taking place.. yet I keep going..
I love the people that have entered my life due to HD... (many blessings and love to u all)
But some day soon I would love to receive the message that a treatment is being tried out on humans for HD and JHD.. and
finally before i go Home to our Lord.. I pray that there a working Treatment to slow HD down or at least combat it ...
OH AMD BEFORE I SIGN OFF... HAPPY 7TH BIRTHDAY TO OUR BUTTON BOY..
.LANDON EUGENE HANSEN