It is always easier to hear and digest good news, but the reality is not every day is a “good” day. It is, of course, necessary to discuss the hard times/struggles in peoples lives, in order to make most days like “wins.” Also, hardships are a part of life that helps us relate to each other and form bonds. It is finding the precarious place between negative and positive, and learning from the like, where inspiration lies.
FA (Freidrich’s Ataxia) in addition to being a degenerative disease that affects the whole body. As if that weren’t enough, a person’s coordination and daily abilities seem to be directly correlated to a lot of external factors. For example, if I get less then 8 hrs of sleep in a given night, my ability to self-transfer from my bed to my chair becomes exponentially harder, if not impossible. Other factors play into my functionality of the day, hence whether I have a “good” or “bad” day.
- amount of sleep
- time to wake alone
- mobility equipment (wheelchair) performing as it should (breaks holding the chair still)
- the state of my bowels
My second week at the gym and would you believe it, not healed. I went to try two new to me different machines and let’s just say the implementation was not exactly as I envisioned it. Then at the end of my usual work out my 16yr old son helped me on to the stationary recumbent bike. (By the way, I am not able to keep my legs moving at a steady 6 m/h pace, or keep my knees close enough together to keep my feet straight on the peddles. I decided to put a rubber/ elastic therapy band around my thighs for resistance and it seems to be working. Still slow going but I am able to successfully create the needed motion in order to peddle the bike.) While trying to position myself my front teeth smacked into the handlebars. As my teeth came in contact with those handlebars, I thought yep it’s that kind of day.
I am not exactly sure when, but close to 4 months ago my 3yr old started having trouble sleeping. We are talking out of bed multiple times a night, restlessness, taking 3 hrs. to fall asleep, sleeping 6 or 7hrs a night and he started exhibiting aggressive behavior. I know what you are all thinking, wow a kid who does not sleep well alone. My son has been sleeping in his own bed since he was 3 months old and sleeping through the night since he was 6 months. He was also always a champion napper and went to no nap. One year ago, before all this started, he also had his adenoids and tonsils taken out. Eliminating one of the common sleep disturbances in children. Yes, he has blackout curtains and a noise machine.
This same son of mine was so excited to start his half-day preschool Wednesday. Got up at 5am, ate breakfast, got dressed, brushed teeth. Meanwhile, I am practically dancing. My husband brings our son to school, only to be told preschool starts tomorrow. To say we were both deflated would be an understatement.
Needless to say, “bad” took a toll on Mommy regardless of my disability. And if I was able to run, I might have strapped on my backpack and run for the hills. Life for whatever reason serves people different struggles, where a person is given a choice is whether to suit up for battle (figuratively of course) or turn and run never looking back. I, like so many others, have found myself on life’s battlefield over and over again. Personally, I am a fighter (which by no means implies I do not have setbacks or minor freakouts), but I am always here to fight one battle after another.
I have learned in order to make these wins in life, it is important to think of your ultimate goal and it doesn’t matter what the size of the goal is. Most of the time preceding this goal having a small freak out is required: screaming, playing angry music, whatever works for you. It does suck sometimes to feel like “bad” things only happen to you. I know at that moment it feels like that but it’s not. I am telling you, it’s not just you! You, however, are the only one able to improve your situation. Asking for help, drawing from resources, research, and even just venting helps. Those are just some of the ways to be a life warrior. Guess what? When the next battle comes, and it will, you will have one more weapon in your arsenal.
It is the really “good” days, that get me (us) through the “bads” ones. When it was really the first day of preschool I went with my sister to pick him up, the huge smile he had from ear to ear, the day that I could wheel myself up the steep back entrance to the Ecotarium are triumphs that fuel me through the battles.