Somedays I have trouble seeing the light

I tried to write yesterday, but it was to fresh.. my feelings and thoughts were quite jumbled..
So I am going to try today,, I guess I should explain why I feel this way??

Kate and Shawn.. birthday loves!!

Some days dealing with a child is hard.. and dealing with a child that has a disease that impacts their brain is at times so wonderful and other times so very stressful
I have two.. Katelyn and Shawn.. and I would not trade them for ANYTHING in the world. I, like any mother get overwhelmed, scared, angry, and sad-- I also Laugh more,give thanks for the little moments, and most of hold all my kids close to my heart.
So when I the bad days come, it seems to hurt more.. I am blessed to have all my children, Katelyn, Mikey, Landon, Shawn,and Gabe.. I would not change one thing about them.. They bring me great joy and love..
Days like yesterday hit me hard and it take a bit for me to find my feet again..
Yesterday Kate was upset with me.. and I can't say I blame her. I can understand her frustration with being 20 years old and having mom and dad living with her and having a boyfriend mom and dad don't approve of. It is stressful for her. I have tried to be honest with her and tell her where we are at and what we expect from her and her boyfriend if they are to be together. Sometimes she gets it other times I see her shut down and block out what we talk about.
I get mad at myself because I can't reach her.. I get mad because I don't know what part is her just being 20 years old and what part is JHD... I miss my daughter who came and talked to me about everything.. even the things i didn't want to know.. I have accepted that we lose her piece by piece.. What I struggle with is how she changes her mind and how we are always the bad people.. I don't know how to make it right with her.. and perhaps I can't.. If that is the case than I need to change my way of communicating with her and perhaps how we go about our daily lives..
I am not talking about her making a choice that we want.. I am talking about her stopping to look at the big picture.. I see that ability of her being torn down little by little... and it makes me sad...

When I try to explain why we do something or that we planning and why.. often times it won't sink in.. or she wont remember and than I am being to bossy with her.. Yes it is frustrating.. I am sure many JHD parents know..  But I still have guilt that We have to tell her everything and let her make her decisions..Yet she struggles with planning and following thur on plans on her own. She gets mad at me and than i feel like scum for the rest of the week..
Perhaps I just need to buck up and just do what is best for her? I know that I do, I just struggle with the guilt.

Landon & Gabe being silly

mommy and landon

Shawn is is the same.. The little boys and Gabe most of all cant understand that he cant throw a fit like Shawn and get away with it. It is hard for Landon and Gabe. Landon's heart is big and when he acts like a 7 year old I am shocked.. because he is usually so well behaved and loving. Gabe is a 4 year old who is trying to find his place.. he is such a mommy boy that at times i cant walk from one room to another with out him.. He is a loving little guy, but he picks up on Shawn's behaviors with out any problem.. the Good and the bad..
It is fine line to walk for all my kids. I feel many time I have let them down, I am trying and my love is unending, perhaps that's why it hurts so much when they are hurt or angry or just confused with me as their parent and their caregiver... I think I have have some growing to do also. I am far from perfect and always will be. I pray for them and ask that they may find God's love and that they may find peace and hope in HIM.

I don't mean to be whine or act like i have done nothing wrong in raising them. God know i have many epic fails.. in parenting and in life.. Some days it is hard to see any light and know that Life is Good.. (not perfect not wonderful, not horrible, or tragic, just good). Some days I see that light and hold fast to it knowing that it will get me thru the not so good times. But yesterday was a day that I lost the light, and I know it will come back, and God is with me, it is days like that that I have trouble seeing any light....


 I look at all my kids and see the people they are becoming I hope that in a small way they will look back and think of me and smile and say yep that was my mom and we knew she loved us. 

Amazing is our Lord

I still am in shock with the amount raised for our local HD chapter. I went to a meeting of the Iowa Pet Breeders in Ottumwa Iowa on Thursday Friday and Saturday. I did with my boss Dr. A G Beukelman DVM.. ( or as we know him Arnie) and with my wonderful husband Mike. There we talk to people about vaccines, worming  and all that stuff that goes with breeding dogs and cats.
Dr Beukelman had allowed me to set part of our booth with flyer about Landon and Kate and her battle with JHD..Terry Emmons from the Hunte Corp and Rob Hurd from APR and The board of Iowa Pet Breeders saw these and asked if they could have some bracelets to auction off at the IPBA annual auction ton Friday evening. I was humbled and was every happy to do so.
After a supper with Lots of Fun and talking, the Auction started... Than Rob Hurd announced that they were going auction off some bracelets made by a 7 year old boy who's sister has Juvenile Huntington’s disease. He also asked me and mike to stand up and we did..Than he told everyone in the room about JHD. He said how Landon is raising money for a cure and he been doing this for a year. 
Than the auction started: the opening bid was 100.00... than the next bid was called out 200.00 and than 700.00 and than 1000.00 and on... it stopped at 2500.00... tears rolled down my face. My whole body was shaking. My boss won the bracelets... and wrote the check for 2800.00... than he looked at Rob Hurd and said resell them!! and they did... and the opening bid this time?? 600.00 and than 800. and than 1000.00... and than they sold it again!! they sold the 3 little bracelets for a total of $4642.00... I cried and cried... and I hugged so many people. Even Mike may have shed a tear..We are humbled and we are grateful and most of all we are so very THANKFUL

the 3 most expensive bracelets i have ever held

They than gave the bracelets back to us... 
Now most of these people I have never met.. I have never seen.. and some I have never talked too. 
God was there that night.. 
I had a Amish man come to me and tell me " what a blessing!" and I said yes it has been and I am just in shock! He says to me" when God puts something into someone's heart, it happens." 
I could have not said it better my self. I am so humbled by the not only the amount of money rasied, but even more from the people who learned about JHD/HD and from their kind words and loving prayers. 

Yes, God is GREAT!! GOD IS PERFECT and faith in him is all we need! 
 "For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future." - Jeremiah 29:11
WE PRAISE OUR LORD AND IT IS ALL FOR HIS GLORY!!


http://www.facebook.com/pages/Avenue-Veterinary-Clinic
https://www.aprpets.org/
http://www.huntecorp.com/default.html
http://www.iowapetbreeders.com/aboutiowapetbreeders.html
http://www.iowapetbreeders.com/upcomingevents.html

Through the Eyes of Children

I  did not write this but I wanted to share it..... I am printing it out and putting on my wall... because sometimes the hardships of life make me forget all these little things and make life so perfect!!

Through the Eyes of Children
When I look at a patch of dandelions, I see a bunch of weeds that are going to take over my yard.
My kids see flowers for Mom and blowing white fluff you can wish on.

When I look at an old drunk and he smiles at me, I see a smelly, dirty person who probably wants money and I look away.
My kids see someone smiling at them and they smile back.

When I hear music I love, I know I can't carry a tune and don't have much rhythm so I sit self-consciously and listen. My kids feel the beat and move to it. They sing out the words. If they don't know them, they make up their own.
When I feel wind on my face, I brace myself against it. I feel it messing up my hair and pulling me back when I walk.
My kids close their eyes, spread their arms and fly with it, until they fall to the ground laughing.
When I pray, I say thee and thou and grant me this, give me that.
My kids say, "Hi God! Thanks for my toys and my friends. Please keep the bad dreams away tonight. Sorry, I don't want to go to Heaven yet. I would miss my Mommy and Daddy."

When I see a mud puddle I step around it. I see muddy shoes and dirty carpets.
My kids sit in it. They see dams to build, rivers to cross, and worms to play with.
I wonder if we are given kids to teach or to learn from? No wonder God loves the little children!

Enjoy the little things in life, for one day you may look back and realize they were the big things.

Some days I do get caught up in the worries and stress of life.. and than one of the boys or Kate will say something that stops me in my tracks... and than all the worries are gone ..if even for a moment. (exp: Gabe running around in a spider man mask.. and stops to say I love you mommy, BUG HUG MOMMY. or Shawn saying u make me smile today.or Landon getting home from school and finding me and wraps his arms around me and says I missed you today mom. and Kate saying "thank u" mom... 
They teach me so much.. God thank you for them for their smiles and for the hard times.. that make me love these little moments even more.

Kate's baby

baby girl at 20 weeks and 1 day.. 11oz and super cute!!

at 16 weeks

16 weeks

playing with her ears at 16 weeks just like mom

tiny foot

Kate baby at 20 weeks

So much is happening for this little girl.. We are so excited to meet her.. Knowing God has a plan for her and he knows her already.

The wonder of a new child is so overwhelming..
I look at Kate and see MY baby girl turning into a mother. I see how her hand rest on her tummy or how she touches her tummy.. I cant thank God enough for his blessings.. 
Kate has so much going on but yet for the most part she stays calm and happy.. Her giggles ring thur my heart as we talk about her baby and her brothers talk about the baby or about anything little boys talk about.. 
I wish that i could help her more.. take away the pains she experiences.. take away her worries and her fears..
But any mom feels that way..
She worries about her Boyfriend and his family.. she worries about the future hold for them and her and the baby.. She worries are based in truth .. I pray that God may give me and Mike the courage and strengths to help her and support her.
Kate's hope are that her boyfriend can come back to her healthy and whole.. that he can find his way to become the dad he will need to be. She knows this is not a change that happens overnight or in a months time.. It is life change. That it will take much courage and will power from him.. She knows the baby welfare is first in everyone mind.. She hopes and prays that we will all be able to work together and show her baby all the love we feel for her. She wants to make her boyfriend all better. and yet she knows that she can't do it for him that he has to take that on for himself.
 She has trouble with stress and worries.. So I pray that we can help her deal with it. I pray that the choices we make are based on love and for her benefit, and not on feeling that we may have.

We keep looking for ways to raise awareness for JHD and HD.. for I have found it frustrating and hard to travel thur the the social security and ssi and Medicaid highways. it is frustrating to find a dr that knows about HD yet we cant see him due to rules and regulations.. so we end up back at square one.
We searching for a dr to help Kate deal with her feelings and explain to her what is happening.. yet we are having trouble finding one.
Yet we have faith and knowledge that she will find her way.. That no matter what life brings we will trust in God to see us thur it.

We must trust in God for it thur him we have peace and hope.

MAD... sorry

http://highwire.stanford.edu/cgi/medline/pmid;22095692

So much hope we have... and yet someday it feels that the mighty dollars is all medical  field seems to care about.  I can't understand why the wait, why the dragging of feet. It is bad enough that so many kids and adults have Huntingtons, let alone the fact we have so many at risk.. WHY?? .
I sorry to ranting and rave.. Usally I am full of hope and prayers. I just read a artical and it makes me sooo upset that so much money is being spent and yet we HEAR NOTHING on treatments .. instead I get letters asking for more money and if we can sign Kate up for research... WHAT RESEARCH??
I still have hope and faith ... I know the cure is out there... They just can't seem to get out to the victims of HD and JHD. The fact is that if all these so called reseachers would stop looking at the bottom dolllar and WORK TOGATHER , the chances of moving forward would be a reality not just a dream... Why have 67 diffrent research labs that do not share information??? DOSE THIS MAKE SENSE??                                 
I am just so sick of getting request for money, and hearing "we are here for you, our families" we will help, just ask.. yet when a request is made there is no response.. OR worse I hear, "you have to talk to your local chapter. And see what they say, than u come back to us. But we really can't help all our families" The need is too great." oh and by the way, would you like to donate??"
I refuse to understand this.. I won't!! I get how the politics work, and since it is the mighty dollar that runs it all.. it make me sick to my stomch..
I know there is RESEARCH HAPPING  and there IS HOPE.. What I saying, "is that we as a whole,we need to stand up an shout, WE WANT RESULTS! WE WANT HDSA TO SHOW US WHAT OUR DOLLARS ARE BEING SPENT ON.. not some damn report that says x amount of dollrs are given for this and so on.. WE WANT TO SEE THE RESEARCH, WE NEED TO SEE THE RESEARCH"
We live with HD and lose our loved ones more and more each day! No more of these 1/2 hopes.. Give us some concert.. human trials or some thing.. AND FOR THE LOVE OF GOD, SHARE THE RESEARCH WITH EACH OTHER! I DON'T CARE WHO GETS THE CREDIT FOR FINDING SOME SORT OF TREATMENT.. THE ONLY THING THAT MATTERS IS THAT ONE IS FOUND, AND THAT WE CAN HAVE ACCESS TO IT!!

Sorry everyone, please know I do SUPPORT HDSA 100% AND THEY DO MANY GREAT THINGS!! My point here is more toward researchers.. that act like they can't share information!! My daughter will lose her fight with JHD, but God willing, her child will have a chance, if we can get these researchers to come together!!
families of the victims of HD and JDH know exactly what i am talking about. We seize anything that give us a chance to fight... The research about QZ10 has been going on for over 15 years!! and there is no real answer.. dose it help?? dose it not help?? even the Centers of Excellent have different opinions. I even had one DR tell the cure is about 6 months away.. I wish! Can we get the information togather and let our familes know??
there are some excellent bloggers that try to keep us all informed, but that is no enough..Kate's dr is not going to read a blogger and even if he does, getting the right information and making sure it is true, it another hurdle.
So where can a dr get the right information??
Ok i am done.. Have to take Shawn to his OT today and make sure his therapy is working... ( Shawn has aspergers. (they have a basic idea and plan) Even though there such a WIDE range of autism...
thanks for all the prayers and hope, and KEEP SUPPORTING HDSA!! THEY WILL ALL COME TOGETHER AND A TREATMENT WILL BE FOUND!

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.. 

Merry Chritmas

We are bless with so many blessing this year. We have so much hope for fighting JHD/HD... and we are trusting God to hold us when we fall.
our family and friends have been so loving and supporting this year. Thank you from the bottom of our hearts.
We pray that each and everyone of you feel Christ's love. We know this time of year can be hard.. But we want you to know you are loved.
We sometimes forget to tell people that.
And we want you to know you are.

We are excited aout this upcomming year and Kate's Baby Boy.. :)
God Bless and Much Love.

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.”