what a week...

I have been so busy this past week.. Work, Doctor appointments and travel for work and of course mommy jobs and church, and Huntington's meeting. 
Travel to Morton Mn and attended the MN PET BREEDER ANNUAL CONFERENCE...there they auction off 3 of Landon's bracelets and we raised a total of 659.00 for our HD chapter.. AMAZING.. totally scarey to stand in front of 50 to 75 people and tell  them about Huntington's and ask for help..the prayers and well wishes were amazing.. so many asked what is HD and where can they find out more about it.... 
 http://www.wehaveaface.org/feature
JHDKIDS.COM
 I told them and even showed some of the people on my phone... I am trying to find a way to fight back against this stupid disease. I will until my last breath.. not just for Kate and her Child but of all these people who have lost loved ones and who are fighting and those at risk...

       I needed to attend the HD meeting as I am struggling with feelings of grief an anger and happiness.. It is very strange to me to go thur all of these emotions almost on a daily biases.. I can talk to my support group family knows these emotions.. The issues I have toward Kate's baby's daddy are a totally separate issue.. I am working toward what is best for Kate and Her baby.. not what I want or feel.. this a hard because sometimes the two issues are not the same... and many times it is in the eye of the beholder as far as what is best for Kate and her child..Meaning that I may feel one way and she may feel another..
 I know this, I pray for Our Lord to Guide me and give me the wisdom and strength to be good to my little girl and her daughter.. I don't always say the right thing or express myself to Kate, but we are working toward what is best for Kate and Baby girl, and with God leading us we will get there...I can only pray that this is enough.


At our HD Meeting we were able to ask questions to a panel of lawyers fro MN,Iowa and South Dakota, about estate planning and guardianship and conservatorship and the like.. it was very helpful and yet very scarey.. 




Next...
Kate is 28 weeks along baby is weighing 2lbs and 6oz... and looks perfect.. Landon was there to see the ultrasound this time and enjoyed seeing the baby...


  ¹⁷Every good gift and every perfect gift is from above, and cometh down from the Father of lights, with whom is no variableness, neither shadow of turning.
   ¹⁸Of his own will begat he us with the word of truth, that we should be a kind of first fruits of his creatures.
   ¹⁹Wherefore, my beloved brethren, let every man be swift to hear, slow to speak, slow to wrath: James 1:17-19


Her belly is showing more and more... the baby movements are getting stronger and stronger. It has been so amazing to be a spectator in this event..It has not always been easy for me to watch Kate worry, or watch her tears..But her smile when she touches her growing womb and her voice softens when she speaks about her hope for her child is a blessing. 
She is so excited to meet her child and hold her in her arms.. We are excited for her!

The difficult decisions
We have a hard time working out some choices with Kate. We have to take in what she feels and her thoughts.. She is still our Kate and a precious gift from Our Lord.. for us to disregard her thoughts because she has JHD, would be a disservice to her and to her life. We do make some choices that she might not agree with but we always want her to feel loved and respected. We have had advice given to us that we should not do this..But as a parent and a caregiver I can't do this without feeling I have failed her and my duty and responsible to her. 
I know that there are days that I feel that it would be easier for me to just do what I want.. I choose to not do this as I know in my heart that no matter what JHD does to Kate, She still has thoughts and feelings that need to be acknowledged and expressed, and my feelings come in 2nd and I have to base choices and decisions what is best for her and NOT my feelings .. 
There are times that Mike and I sit and talk and wonder what parts of her behaviors are from JHD and what is not..But we stand together..and I can say this with out Mike, I not sure I could do this.. He is rock..He keeps me sane.. (if that's possible :) haa haa .. yes I have a sense of humor about all of this for with out humor.. We might not be able to function at all.. We are a family and we are surviving and we will put our trials and our blessings in Gods hands.. for with his guidance we will be ok. 
SO we offer our praise to God and may all we do be for his Glory.. For with out him we would be lost...






 

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










  

hello again

Kate and Baby Mercy ..

 Hello again, I am sorry it has been such a while since we posted.. We have been busy with the "hoop-a-thon" that was put on in Rock Rapids... We had so much fun that day.. Landon turn 7 on Saturdat {Feb 4th} He is super excited to be student of the week and is enjoying the nice weather this week,

Kate eating PICKLES.. her craving..")

 Kate is doing well. We get to see ultrasounds every month and in Jan we found out Kate is having a baby GIRL!!! She is so very excited that she is having a little girl. We are looking to bulid off Kate's room to make a room for the baby..:) Kate has been mantaining her weight and eating very well. She stuggles a bit with mornning sickness but even that is starting to get better.

Mostly We PRAY.. Pray that Kate stay heathly as able and that she keeps her spirits up. We know God is in control. That gives us peace.

Kate's baby Belly..17 weeks!!!

 Kate smile is something we haven't seen much of..Just because she worries about her boyfriend and about us. But over all things are going very good!!

What a wonderful smile to see Kate!!!

Mikey, Kate and Dustin... they were watching the boys shoot hoops

Mike Gabe Cameron and Landon and Shawn at the hoop-a -thon!!

Watching the boys at the hoop a thaon was such a blessing./. and so much fun.. We were able to meet so many people and talking to them and just hugs and prays.. it was WONDERFUL..

Some days i get mad at Huntington's .. So times i get mad at Kate.. But I know it is not Kate.
I try to stay postivite and remeber that God is in control... there are days that is makes it hard. But i keep praying.. and I keep praying.. 

Sept...

We are busy getting ready for Kate's silent auction and waffle breakfast. We have some items already here and ready to go. We are hoping to raise enough money to be able to buy Kate a bed and a few other items.. such as a reader that will read books to Kate out loud. We have been truly blessed with all the love being shown to us..
I will have a list of items posted here later this month.
We also have t-shirts for sale that read Kate's Kronies Fighting Juvenile Huntington’s Disease jhdkids.com If you get a chance check it out. they are 10.00 each and are purple or blue.
I thank God for Jane and Jacey for putting together the website, It is a wonderful way for people to learn and help find a cure. :)
I am also trying to put together a book for help for families like ours.. ideas and resources for help.
Many people ask how is Kate doing.. and it has not been easy. Physically :She is having more and more tremors. Her balance has been affected, along with her swallowing.. Those are the easy parts to deal with..
the hard parts is the sever mood swings and personality changes we deal with. She is not taking her meds and she very moody.. I question some of her Choices yet i Know i must let her live and enjoy life. I worry about her safety, as she struggles with Life choices.
My heart breaks when we have a break down. She is so mad at us for moving all of us together. And I am too..We keep praying and For God is with us.
Kate will be going for another swallow test and in Oct she has appointment in Iowa City.
I am going to keep fighting for research.. not just for Kate but for all the kids and their families.. I truly believe that if we can crack the JHD than the cure for both with be found.. or at least a treatment... SO thing to give families hope...
Landon is still collecting cans for research. He is still trying to kick jhd butt.
thanks for reading and keep the faith-

FOR THOSE WHO TRUST IN GOD ,WILL NOT GROW WEARY....