ANOTHER DAY

Sleep kate

 So much time has past.. so much happening.
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

So many people tell us that We are brave and strong to go thur what we have been with Kate and Shawn (he has Asperger's, a form of autism)But we would tell you that it in God hands, and Kate having JHD does not change who she is.. or how we treat her. Or at least we try to not let it change how we treat her. Is it hard ... yes somedays harder than others. But we know that we are going to be fine. That Our Lord has plans for Kate, Shawn Landon Gabe, Mikey , and Me and Big Mike. We may not understand them but we know that he is holding us and he is our strength.

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

3. I HATE STRESS. IT MAKES ME FORGET MY BLESSINGS AND MAKES ME REACT IN NEGATIVE WAYS

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










  

THANK YOU! FOR EVERTHING

Today is Gabe's birthday he is 4 years old.

We had fun baking cookies and giggling and of course the 2nd annual flour fight.. (1/2 bag of flour was found on the floor..) ok maybe not quite that much..:)
But we had fun.. I love my "other" KT with the baby...

we always have fun making the cookies and such...

So Gene Veritas will be posting Kate story on his blog this weekend... Please read it...
http://curehd.blogspot.com/2011/12/angel-fighting-for-cure-huntingtons.html
and if I offend anyone, I am so sorry, that is not my intent. Our intent to offer our story not for people to pass judgment on but to offer what love we have.. so that people know that We trust in Our Lord to care for us. and that we are fighting to find cure for Huntington's. We want to thank Gene for writing on this hard issue.. it is not a place where i wish any one to be. We feel what we are choosing to do is the right thing to do in our family..It is our belief and our hope that treatment for HD can be found soon so that parents and medical personal can help out loved one with HD and those at risk..

Kate is doing well.. she is eating able to keep it down.. her pain level has tempered DOWN! whoop! (Thank You God) She seems to be finding her way thru this scary maze.. She smiles and laughs with us.. she gets made at mom and fusses at me.. She hollers at her little brothers when they are being naughty...we are family that lives in today and we leave tomorrow in Gods hands...We are not perfect nor do we have all the answers, but we do trust that our Father in heaven has all the answers and so we trust him..

Life is going well
We are Blessed to have loved ones,family and friends who loves us and offer love and hope to us.
. God bless you all and Merry Christmas and Happy New Year!

As our Creator, God knew us well even before we were born. Even while we were still in our mother's womb, He loved and had plans for us.

Luke 1 

39 Now Mary arose in those days and went into the hill country with haste, to a city of Judah, 40 and entered the house of Zacharias and greeted Elizabeth. 41 And it happened, when Elizabeth heard the greeting of Mary, that the babe leaped in her womb; and Elizabeth was filled with the Holy Spirit. 42 Then she spoke out with a loud voice and said, “Blessed are you among women, and blessed is the fruit of your womb! 43 But why is this granted to me, that the mother of my Lord should come to me? 44 For indeed, as soon as the voice of your greeting sounded in my ears, the babe leaped in my womb for joy. 45 Blessed is she who believed, for there will be a fulfillment of those things which were told her from the Lord.”

46 And Mary said:

“ My soul magnifies the Lord,

47 And my spirit has rejoiced in God my Savior.

48 For He has regarded the lowly state of His maidservant;

For behold, henceforth all generations will call me blessed.

49 For He who is mighty has done great things for me,

And holy is His name.

50 And His mercy is on those who fear Him

From generation to generation.

51 He has shown strength with His arm;

He has scattered the proud in the imagination of their hearts.

52 He has put down the mighty from their thrones,

And exalted the lowly.

53 He has filled the hungry with good things,

And the rich He has sent away empty.

54 He has helped His servant Israel,

In remembrance of His mercy,

55 As He spoke to our fathers,

To Abraham and to his seed forever.”