I know that it has been awhile since I took the time to sit down and get my feelings out but I have been seeing a counselor every other week for a few months and she is as amazing as my Neurologist and my genetic counselor. Talking to her has been really beneficial but I have really missed blogging so from now on I will do both!
I have been falling hard for fall and all these beautiful days and trying to spend my time outside with my family.
My mom and sister worked their magic and got me a volunteer position at a local children's museum and everyone there was very sweet and understanding of me. I volunteered there for the first time on Thursday and I had a blast and time flew by. I am now going to look forward to Thursdays!!
For as long as I can remember I have been in love with music, especially country music. I could listen to music 24/7. My best friend Jenny and I believed that music up, windows down, on those gorgeous Kansas back roads could solve any problem and it always did. If one of us was feeling down the other would suggest a drive listening to music. The Voice and Nashville are my favorite shows because of my love of music. I have been to many concerts, but only cried at one, and that was Garth Brooks in Kansas. Anytime anyone would ask Liz and I why we never wanted to be tested we would say listen to "The Dance" by Garth Brooks, "Our lives are better left in chance" So when I heard him sing it live I lost it. In "The Dance" video Garth says people believe it's a song about love, but to him it's about life and the loss of it
"But if I had only known how the king would fall, whose to say I would have changed at all and now I Am glad I didn't know the way it all would end, the way it all would end, our lives are better left in chance, I could have missed the pain, but I would have had to Miss the dance" those lyrics explains my dad dying and me having a beautiful 23 years without HD and I would not change those years for the world if I had would have known. I pray and have faith in miracles that I will continue to be able to live more beautiful years and that this is a bump in the road that will make me stronger.
Thanks for reading and I PROMISE to get in a better blog routine because I do enjoy and love blogging,
The last time I saw Dr. Frank, my neurologist and HD Speciaist, he said to me how long have you been coming to see me and I said a year and a half, and he told me that my HD was progressing very little since he first started seeing me. To say that made me feel amazing and happy is an understatement. I feel as if my disease is progressing slowly and there is so many things I am able to do.
This gives me so much hope for the research of treatments. After the convention my family and I have so much hope in a treatment that will stop the progression and restore what it has done to my brain in just a few years. I pray everyday for this and am witnessing a miracle.
I have been letting myself believe that I will be what I was meant to be a mother, wife and a teacher. I'm letting myself think about baby names again.
In the famous words of my sister at 28 I will be healthy, married and pregnant and
look back on this journey as something that made me stronger.
I am going to continue to hope hope and hope some more.
I've realized as I grow up and get deeper into my HD journey, hard times reveal true friends. I have also realized that it's more important to have a few close true friends than a lot of fake friends.
I can't be worried about the people who can't understand my disease and be my friend and support me, I have to be able to let them go, no matter how hard it is and how much it hurts me.
I have the best and most supportive, truest friends who are willing to understand my disease, and still love me for me. The only hard thing is these people live in Kansas and I live in Boston but they are finagling a trip to come visit me in Labor Day and I will always love them for that.
My sister also reminded me that my family, my mom and sister and my extended family are my best friends and that's all I need here. I'm done fighting for more when I'm the only one fighting.
To my truest friends from Kansas and to my family, you have my heart for all you do for me.