Did I Forget?

I know I have neglected my blog for a long time. The truth is that I thought I had lost my ability to write, that I no longer had anything to say that people wanted to read. Every time I wanted to write a new entry, nothing seemed to come to mind. In the past I have often been able to just let my fingers do the walking. I would just type, and something worthwhile would come out after intense editing. I have had a lot of experiences recently, both spiritually, but I have also made some amazing friends with MD, through a foundation called "Speak Foundation." Right now Richie Sambora is playing an acoustic version of "Living on a Prayer" on the MDA Telethon. That song is so very appropriate, not only for me, but I think for a lot of people. We have to live on hope and prayers. About a month ago we went to a conference in Atlanta arranged by "Speak Foundation." The foundation was founded by an amazing young lady called Kathryn Bryant. The fact that she works full time, fights the same kind of MD as I have, and runs the foundation and manages to raise money and resources enough to make attending the conference free, is, to me, an amazing feat. Thank you Kat; you are amazing.

I had mixed emotions about going to the conference. I am not going to lie and say that I wasn't scared, I was. Until then, I had really only met three other people with MD, Kathryn being one of them. Kathryn has the same kind of MD as I have, making her even more inspirational. I was scared to see people better off than me, but terrified about the ones, whose disease has progressed beyond mine. I was afraid to see my future. I still am, but I think we all are. I met some amazing people, who all have managed to make their lives productive, despite their disabilities. None of them actually appeared disabled to me, I was the disabled one! There were some great panels of experts etc, but the best part of the entire conference, was to hang out. It was an incredible feeling to be able to sit with a bunch of girls and talk about life, about all of the similar experiences we have, as well as sharing tricks of the trade. But we were also just "girls" having a good time. I am still proudly wearing my feathers. The conference was also good for Tom; I think that finally meeting other spouses made him feel a little less lonely. I am not sure what the spouses talked about, and I don't think I will ever know, but I know that he made some connections that will last a long time if not forever. I know that God wanted me there, the week right before the conference I was so terrified that, had we not promised a friend that we would bring her, we would not have gone. I was wanted and needed there, and by having made a promise, I could not put myself and my fears first.. I am eternally thankful for that. A month later, I am still processing the weekend, and I will for a long time yet to come. I am slowly getting back my oomph and my strength to fight as I slowly begin to see that no matter what my MD brings, it is possible to have a good life, it is possible to be happy, it is possible to do things, I just need to redirect my focus even when the little voice inside of me tries to talk me out of it and tells me that it doesn't matter anyway. It matters, I have something to strive for now, I have role models to live up to. Right now I am making the promise to find a way to raise money for the Speak Foundation here in Tallahassee.

In addition to meeting other "older" girls with MD, I also met some amazingly inspirational teenage girls and their mothers. All I have to say is WOW; your strength, passion, and love touched me in ways you cannot imagine.
Thank you, I miss you, and can't wait to see you all again next year. Hopefully I will see some of you in my driveway :-), Kevin and Kim, when Kim and I get to go shopping at the Ellenton Outlets or IKEA, and Kathryn as soon as I can make it to Columbus again, or you can come to Tallahassee.

Just remember:

You'll Never Walk Alone,

P

I have attached some links below to three songs referenced in the blog, all three songs touch me.

Here is the original version of You Will Never Walk alone, made famous by Jerry Lewis' interpretations throughout the years at the MDA Telethons:




Let your Fingers do the Walking is a song by a Danish Band, Sort Sol. One of my favorite songs...



And finally of course.....




Contact email keepinghopejourney@gmail.com