Thursday, October 30, 2014

HD Walk For Hope Weekend

We had our HD Walk for HOPE Weekend  and it was a huge success, we exceeded our $5,000 goal. I would like to say thanks to all the people that made it possible, you all know who you are.

Friday night we had the concert with local Christian and Bluegrass groups, Hammertowne, Larry Cordle and my Step Mothers group Living Water. They all done such an amazing job.

I made these collages of Dad and put them on a poster to hang up during the concert and carry during our walk. Just some pictures throughout his life some before HD, some after HD.

Saturday morning while sitting at a red light Taylor my oldest son who is 7, asked me why are we raising money for Huntington's Disease, I told him because that is what Papaw Jeff passed away from and we are raising money for people that have HD and money to find a cure. He then asked the dreaded question, "Does everyone that has Huntington's disease pass away like Papaw Jeff did, Mommy?'' I felt a pit in my throat and at that time I didn't know what to tell my Son. All I could say is we have to have HOPE that one day there will be a cure. Then it happened, a song came on the radio that was played at my Dad's funeral, Kansas- Carry On Wayward Son. If that wasn't a sign I don't know what is. I told Dad "Good morning and to watch over us today." Of course by this time I had tears in my eyes but I knew he was with us, just at the right time...telling me it was going to be okay.

 The boys and I made it to the church and started helping getting things together. Luke my youngest who is 4 decided he wanted to help put the sign out. It made my heart smile seeing everyone there helping to raise awareness for HD. As I have done the last 2 years, I walked with my Husband and our boys. Trying to make a difference in such a devastating disease, for myself, my family and every other person that is affected from HD.
I would also like to say thank you to The Levisa Lazer  in Louisa for doing a article on our HD Hope Weekend. I will post the link below.
                               HD Walk For Hope Weekend

Monday, October 20, 2014


I won't be posting for a few days. 
I have been really busy with moving and plus our Team Hope Walk is coming up this weekend so trying to get things in order for that. 
I will post pictures from our concert and walk sometime Sunday.
I know God will bless us with reaching our $5,000 goal, he has the last two years.
If anyone would like to donate, all money goes to HDSA to help families dealing with HD and finding a CURE. Thank you!!

                           Huntington's Disease Donations


Saturday, October 18, 2014

You Don't Walk This Path Alone

Why did I start a blog?
Not only for myself to use as an outlet for my feelings and everyday life but to document my journey with Huntington's Disease. At first I thought about just writing in a journal, something for my husband and boys to keep after I am gone but I decided it would be more beneficial for myself and others if I just started a blog. Of course one of the first things I thought of was, will anyone read it?

 One day there will be someone who reads this blog and they will say, "I am not alone." 
To have that feeling that you are not alone truly means everything.You can go from feeling like you are hopeless, to knowing you don't walk this path alone. I want to inspire people. I want someone to say because of you I will NOT give up.
One step at a time.


Thursday, October 16, 2014

That Time Again

This time four years ago I was at the nursing home with my Dad and Family. He had been hospitalized and put in ICU a couple weeks prior due to pneumonia and the fluid build up in his lungs from the progression of the Huntington's Disease. I just remember the look of fear in his eyes, fear that I had never seen in him before. 

When Dad tested positive for HD he had a living will made up in front of a lawyer, with a DNR (Do Not Resuscitate) it was his wish to not have anything prolonging his life. I know deep down he done this because of all the years he watched his Mother suffer in the nursing home. 

October 14, we had a meeting with Dad's Doctor. My Step Mom, Sister, Brother, Husband and I, we all sat there and listened to the words we knew where coming to soon. "There is nothing else we can do for Jeff, his lungs are filling up with fluid and it is as if he is drowning." With this being said the emotions did hit us all, we made the decision to have him sent back to the nursing home on Hospice care. Over the next three days family came into say there goodbye's and we all prayed that God would just take him and end his suffering. We stayed around his bed, letting him know it was okay to go Home. I will never forgot when my Step Mom, Shona told us all to get up and come over by the window to pray. As we stood there and prayed, our back turned to Dad's hospital bed he took his last breath. He didn't want to go with us watching him. 

Sometimes it's hard to remember him before HD, but the memories I do have I will cherish forever. I feel at peace knowing he doesn't have to suffer anymore. I couldn't be selfish and want him back even though I miss him more than words can explain. I am beyond grateful that he had the chance to meet his Grandson's. Luke was just a baby but Taylor does remember his "Papaw Jeff" he talks about him often.

Dad was a proud Veteran and felt honored to have severed in the Army for his country.

 He enjoyed being outdoors, hunting, fishing or just mowing the lawn. I remember the long walks we would take on my Grandpas farm.
Then every moment after HD

Wednesday, October 15, 2014

This is NEW

Today is the beginning of something new, my first BLOG post. This is going to be an outlet for myself, a way to deal with grief and just everyday life in general. You will get an insight on my journey with Huntington’s Disease and trying to find ways to deal with my anxiety and depression issues. If you are not aware to what Huntington’s Disease is please click on  ” What is HD?” & “About Me” on the right side of the page.
I am somewhat of a quiet person, I really don’t talk a lot. I find it much easier to write it all down. When I do have conversations with others I feel as if what I am thinking in my head is not what comes out of my mouth. A lot of people don’t know what I am going through, including some family. Some just think I have became cold, because of social withdrawal. I don’t feel comfortable around a lot of people, I honestly feel as if I am underwater and cant breath. I rarely leave the house other than taking my kids to school. Home is my safe place, with my Husband and our Boys. With that being said it doesn’t mean that I don’t love the rest of my family because I do, I love each and every one of them more than they will ever know. I was told by a family member that “Actions speak louder than words.” I have yet to explain to him how I feel and what I go through each and every day.
I don’t want people to feel sorry for me, or think I just use it all as an excuse, because I don’t. I just want others to know that I didn’t choose to be this way and with HD it wont get any better. My Husband understands that and he is my rock, I really don’t know where I would be without him.  He knows that my anxiety and depression are from the Huntington’s. Tonight we were lying on the couch watching TV together, he looked at me and said “Sometimes you act like your not even there.”  I told him that I know, because I do feel that way a lot, and I told him that he needed to tell that to my new Neurologist when we go next month.I have noticed the changes in myself over the last couple years, I think that my Husband is just piecing it all together.
Hoping and praying to find out some answers soon.
Until next time.