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,

Panel at USD

So today Kate and I traveled to Vermillion SD..We meet up with Betty Margaret and Lorraine and Pete from the HD support group. We served as a panel for first year medical students to learn about HD and JHD.. It was very nerve racking.. yet very nice.. the students asked questions.. It seems they related to Kate due to her age. She answered many questions.
I am so proud of her.
I love road tripping like that with "MC KATE".. she controls the music..I love the memories we are making.. We giggled about some stupid things she rolled her eyes and me and she laughed with me.. it was a beautiful day... Thank you God for Tod

"now may the God of Hope fill you with all the Joy and Peace in Believing,So that you will be abound in the Hope by the power of the Holy Spirit" Rom 15:13

So another day.. We received more stuff int mail for the auction! .. I pray that people will come and learn about JHD/HD...
The doon press emailed and asked to interview Kate.. I said yes..She may get upset with me.. But we can deal with that when the time comes...

:)
God will show me my path



Proverbs 3
13Happy is the man that findeth wisdom, and the man that getteth understanding.
14For the merchandise of it is better than the merchandise of silver, and the gain thereof than fine gold.
15She is more precious than rubies: and all the things thou canst desire are not to be compared unto her.
16Length of days is in her right hand; and in her left hand riches and honour.
17Her ways are ways of pleasantness, and all her paths are peace.
18She is a tree of life to them that lay hold upon her: and happy is every one that retaineth her.
19The LORD by wisdom hath founded the earth; by understanding hath he established the heavens. 20By his knowledge the depths are broken up, and the clouds drop down the dew. 21My son, let not them depart from thine eyes: keep sound wisdom and discretion: 22So shall they be life unto thy soul, and grace to thy neck.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

Hope

We have hope.
Hope for peace.. we Have peace because we have hope.
When the world is insane and troubles over come us.. i lift up the worries to God..
and When all is well and good. I lift up praise for all his Blessings!
So I rest easy in that HOPE

and hope for a treatment for JHD
http://www.pbs.org/wgbh/nova/body/rnai-cure.html

http://www.wehaveaface.org/Help4HD.html

Psalm 119:114
Thou art my hiding place and my shield: I hope in thy word.

a bit over whelmed today.. but God will hold us.

Kate's Kronies: it 4 am ...

Kate's Kronies: it 4 am ...

it 4 am ...

So it 4 am.. Gabe is sick with flu.. i am sitting waiting for him to wake up and vomit some more...
Kate keeps wanting to move out .. I keep telling her she can't be alone. She is struggling with that.. it Makes her very angry.. I wish i could help her..We have talked about her staying with her Uncle, but her Uncle not sure he can let her... not mention that there is very little room since the tow bedrooms are already being used.. But we just keep moving forward..
As for JHD/HD awareness, well got an email from Jane Mervar, she and many others put together JHDKIDS.com , any way she included me! That gave me a extra boost to keep moving to keep "shouting out" about JDH/HD.
We are attending the Sioux Valley Chapter Fall Seminar for JHD/HD. and than going to on a panel for the USD medical school students and Jay Flanagan on Monday, September 26, at 10:15 AM in Vermillion, SD...
So busy weekend!!
oh and Sunday is our wedding anniversary!! 12 years married and 15 together..Pretty insane.. and pretty blessed I am..I have a wonderful husband and beautiful children!
Gabe is vomiting so better go for now.. but remember awareness.. and remeber Keep fighting

Psalm 16:9 Therefore my heart is glad, and my glory rejoice: my flesh also shall rest in hope
God Bless and KEEP PRAYING

It's all about awareness!

jhdkids.com

http://www.wehaveaface.org 

 http://www.hdsa.org/national-convention/pastpresentations/2011-presentations/ncqa1.html

http://vimeo.com/28043836


Links to learn... links in cause our kids are not enough to have u help us fight!!
If it were u r child... wouldn't you do it? fight till every child had a chance??? That what I am doing my heart know that Kate will leave us... But my mind says.. that we will keep fighting for Kate and all the other Kids.. all the one's who past before those who are suffering now and those who are scared of tomorrow.. That why we write letters, and speak till people are sick of hearing about jhd and HD.. and we keep going!! Cause some where the treatment and/or cure is reach able!

than Jesus said ,"come to me,all of you who are weary and carry heavy burdens, and I will give you rest. Take my yoke upon you. Let me teach you, because i am humble and gentle at heart, and you will find rest for your souls. MAtt 11:28

Katelyn's story-Kate's Kronies: Sept...

Katelyn's story-Kate's Kronies: Sept...