At eight p.m. I found myself driving to Target to get a birthday gift for my nephew. As I was walking into the store, I couldn't help but smile. I was never able to drive in the evening because by nighttime, my body was immobile Even though I had a crazy busy day, I feel incredibly blessed that I could run one more errand before the sun went down. So, when Jack opens his DS game tomorrow evening he will be happy that he has a new game and I will be thrilled that I could go get it all by myself!
Happy 10th Birthday Jack
I love you!!!
For the past 30 some years my evenings consisted of sitting on the couch and reading to my girls and watching television. Tonight was a new night. In 15 minutes, I did 50 sit ups and 1 1/2 miles on the elliptical. Sure, it would have been easier and more entertaining to find out who will get a rose on The Bachelorettee, but I'm going to take what the good Lord has given me and start doing cardio exercise daily. I hope you will do the same.
Sharon and I ran a couple errands this afternoon. I parked my car, and helped Sharon out of the backseat. As we walked hand in had through the parking lot we passed a handicap parking space. Sharon asked me why the spot was so much larger than all the other spaces. I explained that many people with disabilities need to open their car door all the way to make it easier to get in and out of their car. I couldn't help but ask her if she remembers me parking in spots just like that. Her response was a simple, "No."
It wasn't that long ago that a handicap parking space was necessary for me. I had to open my car door all the way to hoist myself out and walking more than a few steps to the store doors was unthinkable. So, here I am today elated, not only that I am capable of returning items to West Marine and Target by myself, but that it doesn't matter that the only parking spots on this Sunday afternoon are clear across the lot.
I guess what I'm trying to say is we shouldn't complain that someone just stole the last close parking space. Chances are that when you get older, you will need to use that handicap parking space and you'll look back and remember how good you had it when you had to walk a long distance in the cold rain.
Everyday that I am able to step into the shower I feel blessed. Bathing has always been a chore that did not come easily and often ended with me asking for help. Not until recently, I always had to wash my hair in the sink because my balance didn't allow me to do the task standing in the shower. I would depend on my mom or my husband to wash my hair for me.
Showering independently is one of those things that I'm sure many people take for granted. It was always one of those things that I dreaded, but now I can do it without anticipating my next step in the process. I can stand in the shower and not worry about whether I will fall and hurt myself. I am actually to the point that I can see why many enjoy showering after a long stressful day. It's funny that I never knew it could be relaxing, not to mention a break from the kiddos!
Days like today are a great way for me to remember where I have come from. It's also a good way to remind myself that it is essential that I get an adequate night of sleep and stay as stress free as possible. Last night I only got a a handful of good sleeping hours. If I don't get at least nine hours of sleep I really notice that my hamstrings become stiff and sore. Don't get me wrong. It's not nearly as bad as it was before my new diagnosis. However, after a poor nights sleep I really notice that my balance is off and my limbs are fidgety. That's when I take a good look in the mirror and tell myself to slow down and listen to my body!
My brain doesn't produce Dopamine like "normal" people. Our brains make Dopamine while we sleep and my brain doesn't seem to do what it should. Therefore, it is out of necessity that I get a long nights rest AND take my medication.
In the past if I got a bad nights rest like this, I would need to spend most of my day propped up in a chair or simply go to bed. I never knew any thing different. It was just a way of life for me. In fact, even if I did get adequate rest, my brain still did not produce enough Dopamine to last me the day. My body would become more spastic and weaker as the day went on. Leaving me dependent on others.
In my new life, I know that I need to take a nap the day after a poor nights rest. It's not because my eyes are tired. It's because if I don't rest, my arms will twitch, my balance will be off and my legs tight. Life is a gift and I need to take care of myself. After all, I'll take a physically bad day of my "new life" over any really good day of my "old life."
When I was a little girl I was never in sports for the obvious reason. If I couldn't stand still for more than a few seconds, if at all, there is no way that I could dribble a basketball down the court, slide into home plate or run hurdles in track. That's why it is really hard for me to believe that I have joined Steve and the girls in their Martial Arts class on Wednesday nights.
My supportive, optimistic instructor new me when I was unable to walk and depended on my scooter to get around. I'm sure that's why he is so patient and understanding while I have been learning to stand on one leg and attempt kicks. At the end of every class I have a very strong sense of accomplishment. Tonight was no different.
This evening we worked on defending ourselves if some one attacks us and gets our back to the ground. Steve and I were paired up and I was pinned to the ground. Our instructor walked me though what to do, and in the end I had my legs wrapped around Steve's neck, squeezing it as hard as I could. I had such a mix of emotions. I couldn't help but giggle, because of the obvious, but I realized how far I have come this past year.
Just over a year ago, my legs didn't allow me to stand on my own. They were weak and unreliable. Now here I am gaining strength, little by little trying to take my husband down in Martial Arts. I am actually participating in a sport. Not just any sport...Martial Arts.
Sharon is always ready to point out if I'm doing something new. This afternoon was no different. She turned on some silly preschool music. When "I'm a Little Tea Pot" began to play, I jumped off the couch and grabbed her hands and began twirling her around. When the verse, "tip me over and pour me out" was sung, I lifted her off of the ground and held her upside down as though she was the teapot. It was fun to hear her giggle because of something I did. I began spinning her around in circles until the song was over. When I placed her safely back onto her own two feet she immediately informed my that, "You could have never done that before."
At the end of the day, it's the little things in life that matter the most to me. It's spending time with my daughters. In the past, I was never able to take them on a walk or swing them around while dancing. Quality time with my daughters consisted of playing games together, coloring or just watching a movie together. Those are all important as well. I believe that when they are grown with children of there own they will remember that Mom did fun things with them. Chances are their most important memories with me will be the little things that we did together at home not big trips to Disney etc. As I become more busy, it's critical that I take time to show my daughters how much I love them. They are a gift from God and out of all them moms in the world, God chose me to be their mother. I'm not going to waste His gift to me!
Well, summer vacation is here and both of the girls are in activities. Today was Sharon's first day of swimming lessons and Winona's first day of basketball camp. As for me, it was my first day juggling everything that mom's do when the school year comes to an end.
Since we are fairly new to the area, we don't just leave ten minutes before we need to be somewhere. It took me an extra few minutes to find the school where Sharon had her swimming lessons. I was happy that I could drive her there and then walk her inside to the pool. In years past, my mom would help me do this. It is a great feeling to be independent. This time when I sat watching her, I didn't have my mom sitting next to me. I missed her company, but there is something to be said for being able to take responsibility for my own children. I should add that even though Sharon dreaded going to her lesson, she did a great job!
After Sharon and I dropped Winona off at he basketball camp, Sharon and I ran many errands. We went to the bank, dropped off money at her Girls Scout leader's house and then went to the Post Office. Again, these are ALL things that either my husband did or my mom would assist me with in the past.
Even though I feel like all I did was run my kids around all day, I know that I really accomplished something today. In many ways I feel whole. I could never fully understand how mother's could get so much done in one day and run there kids in five different directions. I think I am slowly starting to get it.
Now that I'm home for the first time all day I get to clean the kitchen, do laundry and make dinner. Yes, I may seem a little overwhelmed, but last year I wouldn't have been able to do any of these tasks. These are all very special gifts that have been given to me today and I love each and everyone of them the same.
A few months ago, I was talking to my mom about the book I'm trying to write. I was telling her my different thoughts that I want in my book. That's when she told me this: "When you were a little girl I thought that if a book was written about you it should be called Rainy Day Friend." I looked at her and asked her to explain "Why?" She said that when I was little my friends wouldn't call to see if I could play on the sunny days, but I would receive many play date requests when it was raining outside. She said that I was the perfect rainy day friend.
Rain or shine, everything that I loved to play was done inside my home. As a young girl, I kept busy by playing board games, playing house and living vicariously through my Barbies. When I was a little girl, I was not able to play the outside games like all the other kids I knew. On bright and sunny days kids enjoy running in the yard and biking down the street. I would always attempt to do these things. At times I was successful, but more often than not I wasn't, but I would never let my inabilities stop me from having fun.
I find it really important to add that when I was a little girl I had wonderful friends. I don't know if it's possible for me to have had better friends in my life. They didn't care that it took me longer to do things then the other kids my age and if they did, they never let on about it. These girls in my life helped to make me the person I am today. In fact, these girls are still my best friends with whom I share some of my most deepest thoughts and biggest laughs with.
Yesterday was by far one of the best days of my life. I attended my first wedding since my new diagnosis. Everything from the wedding to the reception brought me tears of joy.
When the reception began and the DJ started the music, I was immediately brought to my feet by my dad pulling me to the dance floor. I eagerly followed his lead and we were dancing to the upbeat music. I have to admit, I felt a little awkward. I had no idea how to dance and my sense of rhythm was anything but graceful. It really didn't matter though. All I really cared about was that I was having fun with my dad. We smiled at one another and I can't help but think how happy he looked to see me up and dancing with him.
Last night I learned that I LOVE to dance. As I said earlier, I had no idea what I was doing, but I didn't care. There was just something about bopping around the dance floor with my daughters, husband, nieces, nephews, cousins, sister-in-laws, brother and my parents. We had a blast dancing to everything from Kid rock to The Chicken Dance. I even did the Conga!
I patiently waited all evening for a slow song. It was really important to me that I have the father/daughter dance that I was unable to do at my own wedding nearly eleven years ago. When American Soldier began playing, I knew I had to get my dad out on the dance floor. He gladly accepted my request. Again, I didn't know what I was doing and my dad showed me how to follow his lead, something that I was unable to learn from him years earlier. As I got the hang of slow dancing, I felt it was necessary to tell him all things that I never got to say on the dance floor at my own wedding. He reminded me that everything always works itself out in the end and he was right. By the end of the song, we both had tears in our eyes and unexpectedly I found myself giving my dad a hug and telling him that I love him.
This is clearly a wedding that I will never forget. Last night I was given the gift of dancing with my family; a gift that I will never take for granted.
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!