Thursday, April 11, 2013
Four years ago about this time I was just starting a series of tests on me to determine what was going on with me. Let me back track a little bit for you to understand what I was doing. Each day I'd get up and go to work at the Hylant group then after work I would go to my other job at the YMCA. I was a fitness coach and also coached the special Olympics power lifting team. I can't really call that work because I always had way to much fun with those guys. The special Olympics team were training for a competition, the coaches against the team. We had four events bikes, running and then benching and the dead lift. As my boys would say I'm pretty tough for being a girl. I would work out and hackle right along with them. Even though you can see that they have special needs, they were treated normal. They didn't want to be treated as if they were different. The only thing between them and us the coaches were that we told them how to do things but they are the HEROS. They taught us to BELIEVE. Imagine going through life knowing your different and people picking on you and calling you names. These boys deal with that but yet they believe in themselves and they don't allow others to bring them down. after each practice we would huddle together in a group and put our hand in the center and on the count of three we would say /YELL BELIEVE. One day I noticed some twitching in my left hand that wouldn't stop. I thought it was from training with the boys or the training for the marathon I was doing either way I figure it was too much and went to see my doctor. She immediately sent me to get some testing done thinking I may have had a stroke. Then after that she sent me to another doctor. She was concerned and felt the neurologist would be the route to go. Long story short after all tests were complete mind you some were very painful that I have ALS. This was in September of 09. in May of that year I asked the doctor if I had ALS. Although he wouldn't say yes and he didn't say no I knew in my heart and gut I did. After finding out John and I both cried. I feared that I wouldn't watch my baby girl graduate from High school. I feared not being able to see my kids get married and have children. I feared that I would be forgotten and that John would fall in love with someone else and forget what we have/had. I worried for Chase, even though he is not mine biologically I still look at him as my son. How would you feel knowing that you are going to die more sooner than later? I have to be honest it scares me to no end. But then a light clicked on and I realized that I can take that attitude and die or I can start living my new life. I choose to live life strong and with a positive attitude. Not everything goes the way I want things to but I choose not to stress out. Just recently John and I made the decision for him to quit his job to stay home with me. We are not wealthy and we have bills like everyone else. This decision that John had is very difficult because he couldn't go to work to get away for he would worry about how I am doing that much more and we couldn't afford to have someone here every day. So this was the best decision for us. Financially we will see but do we have regrets about this? The answer is NO. We have come a long way from the uncertainties of this disease to accepting and living each day as its our last. Having ALS has allowed me to not only let go of the little things but its allowed me to see who I really am and to keep living life in a positive way with a positive attitude. The day you can really look at yourself in the mirror and say I love what I am doing without getting any financial gain then you will understand what I feel everyday. My gain is to live each day to my fullest, live not in fear of being forgotten but to live knowing that I can love and knowing that I am loved. Also believing in myself the way my team has taught me to do and finally to live life strong knowing that you can't change everyone but knowing that if you can help just one person you have done so much more that others only wish they would do. Don't look back at what you could of or should of done. Look forward to your will do and can do's. I guarantee that you will see a happier you. Live life strong and Never give up!
Sunday, April 7, 2013
Sitting in my chair enjoying the peaceful quiet morning with the window open and the breeze coming in. I muted the music from the television just to enjoy this quiet time. How often do you have a quiet time? I am certain that most people don't take advantage of it. If you had down time what would you do with yourself and would you force yourself to sit still or relax? I ask this because we all get wrapped up doing so much that we tend to forget about sitting back and looking at what we have accomplished and enjoying the little things. With ALS you are forced to slow down. You don't have a choice but you do have a choice of how you react. With having ALS I have realized that most of what I do is all ALS related. I didn't think so at first but my daughter pointed out to me that everything I do revolves around ALS. After a few other things that I found out, I realized that she is right. No matter what your situation is, remember that you really need to take that break and really appreciate everything that you have. However it doesn't mean that you forget about what you're doing and give up. I realize that I am thinking constantly of how to raise Awareness and to a degree I can be obsessed and my excuse each and every time is that I need and have to do this because I am trying to find that cure so that you and your children will never have to go through what I and many others are dealing with now. I applaud my daughter, she is right. Not everything revolves around this disease. She just wants normal conversation. Please don't think that she is being selfish. She wants and needs her Mom to be there for her. ALS is and always will be a cruel disease but I for one will not allow this disease take away from me what is most important. The cruel part about ALS isn't the dying... Its how we deal with the suffering and pain and being that prisoner in our own body. The pain is knowing how you could do something and realizing that you are no longer able to. But does that give you a reason to give up? I say absolutely not. I say that you look back at who you were, and look at yourself now. I am certain that there are many things you could do then that maybe you haven't done in quite some time. So when you try to do it you just may have to do it differently. That is exactly what I do. Impossible, can't, i don't think so are things that things that I try my very best not to say. I have always taught my kids never to give up and to always face your problems head on. Well with ALS I am doing just that. The struggles in life maybe more difficult than others but remember after they pass, you can look back and be proud of how you handled it and also share and listen to how your kids are handling situations. You just might realize that the apples doesn't really fall far from the tree and maybe you just might learn a thing or two from your children. Life is so very beautiful and so very precious. Take time to really appreciate what you have and how you share yourself with others. Not everything deals around a situation. So find ways to enjoy life and live your life strong and never give up.