It's hard to believe that another year has passed and it's Halloween already! Growing up, this day was bitter sweet. I loved creating a costume and getting a haul of candy, but I dreaded walking house to house at the most difficult time of day (afternoons and evenings were always a challenge). I was never about to give up time with friends or chocolate, so I used up the last of my energy and even borrowed against the next day just so I could experience this special day like every other American kid.
Now, I love Halloween. It's no longer bitter sweet. It's just SWEET! I was able to take my kids to the Goodwill in search of the perfect costume (disco girl, cat and dog) and I have invited friends over for dinner tonight. I wasn't ever able to make a nice meal for guests. Today I made two kinds of soup, homemade wheat bread and a Halloween cake that impressed my girls. The best part of this day will be tonight when I take my kids out trick-or-treating. I will get to see the look on John's face when candy is placed into his pumpkin for the first time. I never experienced that with the girls. A mobility scooter can't go up steps, therefore, neither could I.
As kids, Halloween is all about the candy. For me, it's all about creating more happy memories with family and friends.
Have a safe and happy Halloween everyone!
As I sit here working on my 45 min speech that I will be giving next week, I can't help but think "How did I get here?" When I think back to everything I have been through medically, it doesn't feel like it was me. In fact, when I talk to friends or family about my past, I sometimes refer to myself as "she." Isn't that odd?
As I've been working on editing and organizing my book, I feel bad for the little girl who had to endure so many challenges. She was so strong and had such a positive outlook on life. And then I realize, that was me!
Daily, I try to be like that happy go lucky girl I knew so well back in the 80's and 90's. She didn't sweat the small stuff. It didn't matter to her what people thought about her. All that mattered was that she was happy. If I really think about her story, I can learn so much from her. As I become more "normal" and fret the small things at times, I make myself reflect on who I was. I don't want to stress about things that won't matter ten years from now. I want to make sure I take time to enjoy every little thing life throws my way. I think we could all learn from that little girl with the knee knock walk. I know I will.
The quality of my life has improved a great deal over the past couple of years. I am slowly learning how to be independent and love trying new things. Even though I love my new life, I know that it isn't perfect and I will always have physical challenges.
While I was doing laundry yesterday, I fell to the floor... hard. I could feel the pain surge from my knees to my back and was grateful that John wasn't underfoot. I quickly got to my feet and brushed off the pain.
Hours later, our downstairs neighbor told Steve that there was a loud bang earlier in the day, which resulted in her light fixture falling to the floor. Of course, I was horrified and felt terrible.
Falling has always been a part of my life and always will be. Sure, things may be better now that I am on new medication, but the truth is, I will never be like my friends. I'm just glad that I can look in the mirror and be truly happy about the person I turned out to be.
I have been entertaining the idea of becoming a motivational speaker. I know, I know, for those of you who went to high school with me, you are thinking, "This girl is CRAZY!"
Back in High School, I couldn't stand in front of the class, much less do it while talking. My nerves would get the best of me and the focus would be on my shaking, rather than my words. I am proud to say, that I have come a long way since then. I actually enjoyed my public speaking class in college and looked forward to presentations! Unreal!
I know that I'd like to give speaking a shot, but really feel that I need to complete my book first. Plus, I'm not sure how my body will respond to speaking on a regular basis. I phsyically don't do well when I am under stress or am lacking sleep. That's just part of my DRD.
Anyway, I was approached by my a friend,who is also a medical student out East, to speak to his class about my experiences with medical staff and life as a disabled person. I am honored that he felt I had something important to share with future physicians. I always believed that I was put on this Earth with limitations for a reason. Maybe, this speaking engagement will go really well and I will follow my dreams to become a speaker. Time will tell. In the meantime, I will continue to give thanks for all of my blessings.
This evening I took Sharon to the mall. She was in desperate need of a new pair of athletic shoes. We went from one end of the mall to the other in search of the perfect pair (if you know Sharon you'll understand). It had been a long week for me, but I was thrilled to be running around the mall, at night! Even though we looked in numerous stores, we left the mall empty handed.
Even though I was tired, I thoroughly enjoyed shopping with Sharon tonight. There is no way I could have done that before (especially in the afternoon or evening). Spending this special time with her was a gift. Plus, we did find her some shoes at Famous Footwear. It all worked out!!!
After living the first 33 years of my life thinking I had Spastic Diplegia, a form of Cerebal Palsey, I was correctly diagnosed with Dopa Responsive Dystonia (DRD). I am on new medication and doing things that I never imagined possible. This has changed the lives of my husband and two daughters. I truly believe that I am living a miracle each and every day. Life can't get any better than this!