Saturday, March 31, 2012

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. 

Sunday, March 18, 2012

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