Saturday, July 10, 2010


Yesterday I found out that next Tuesday is my final OT (occupational therapy) session. WOWIE! I must be getting better, huh? I am excited and scared at the same time. I am glad to have that off my plate since I do so much OT type work at home, but I am scared this is as good as it gets. I don't want to accept that! I want to be close to 'normal' again. It is funny when 'normal' people say I am 'normal', if they only knew what I felt and experienced on a daily basis, they wouldn't feel 'normal' either. I feel far from what the world says is 'normal' and I guess I may feel this way for a while. I do know that I am grateful to have come this far and I will continue to work on the rest of my therapies to become better. Thanks for listening - I may vent from time to time.


  1. Hey Jess, this is your favorite slacker of a PT...thanks for making the blog; it's a good way to stalk you and your amazing progress from a distance :-) I continue to be amazed at and grateful for how well you're doing, and am so happy you're at home and doing well with your boys.

    Remember that when you're the one tracking your progress, it's difficult to see how far you've come, especially when you look for changes by the day, hour, minute, etc. From where I sit, you are a walking miracle, so hang in there and keep putting your you-know-whats on. I am proud to know you and am honored to be a part of your story and get to watch your perseverance in the face of adversity. That's the stuff character is made of, the perseverance part, not the watching.

  2. Hey Shorty... I have read every one of your mom's and Jaime's e-mail about you; sometimes 2 or 3 times each. Your progress is great -- for that I am thankful, but I'm still in shock that this happened at all... Before this happened to you, I was not even aware of Von Hippel-Lindau syndrome; and don't even understand it now. You hang in there; and I'll keep on reading and thinking about you. John

  3. Thanks for the encouragement LeeAnne - it sure was a joy to work with you. Plus you got this big girl out of bed and into her big girl panties for walking. I owe a lot to you. I only hope I can reproduce your good will to others.

    John- I am learning a lot about VHL or Von-Hippel Lindau Syndrome... I know I hope I didn't pass it onto my incredible sons. I am to find out in the next few weeks due to some genetic testing I did. Above all though, God is good and continues His good work in me. I am certainly not a finished product by any means. I am a work in progress, kind of like this blog. Thank you too for the encouragement! I certainly need it!

    Blessings to you both!