Steve and I are coming up on our 12th wedding anniversary and I can't help but think how lucky I am to have him as my husband. As a young girl and teenager, I never thought that I would marry and have a family. My mom would tell me that I would end up with the nicest guy of all, but I thought that I would just try my best to be the best aunt ever.
It takes a very special person to commit to someone who has a physical disability. Luckily for me, Steve was that special person. After being good friends for two years we decided that we wanted more. It didn't bother Steve that I had to use a mobility scooter and that we wouldn't be able to play sports together, go on bike rides, etc.
Steve has been there for me during the best of times and worst of times. He has had to assist me with things that most husbands will never have to help their wives with. I'm sure there were times when Steve wanted to throw up his arms and tell me to go fly a kite, but he never let on. He has a love for me that I never thought I would ever have.
I'm so glad I can share all my new experiences with Steve. When I married him, I never thought that some day we could hike together, kayak together, go tubing behind the boat together and travel so much easier together. I am a lucky woman to have him by my side each and every day. He is the love of my life and I am proud to call him my husband.
I must add that once again my mom was right. I did end up with the nicest guy of all!!!
I made a quick run to the store today. As I was pushing my cart towards the checkout I saw a woman about my age riding a mobility scooter provided by the store. As I watched her ride away from me, all I could think was, "that used to be me."
I have no idea why I have been blessed with so much in my life. I will never be able to thank God enough for all he has given me. My friends and family were always there for me when I needed them most. And still are. I know I don't say it often enough, "Thank you."
As I sat watching the girls swimming lessons last night, I heard the instructor saying, "Kick, kick, kick. Kick those legs." Hearing those words brought me back to being a little girl at the swimming pool with my mom.
In my elementary years, my mom would take me to the pool to work on my swimming. I was able to swim under water, but was never able to stand back up on my own. I would have to raise my hand and then my mom would assist me in getting my feet to the floor of the pool. Not being able to stand back up was not my only problem with swimming. I was never capable of using both my arm and legs at the same time. If I was kicking my legs, I was not able to paddle with my arms and vice versa. My mom would work with me and was so patient about it. I would swim away from the pool wall towards my mom, paddling my arms as hard as I could. Below the surface, I could hear her kind, enthusiastic words, "Kick, kick, kick." I would then begin kicking as hard as I could to only find out my arms had stopped. I would raise my hand and my mom would rescue me. As always, we'd give it yet another shot.
I'm not sure how my mom could stay so positive during these little swim experiences. She never gave up on me and always let me know that she thought I was doing a great job. I'll never be able to thank her enough for being such a supportive parent. I'm sure she was stressed and a bit sad that her daughter couldn't do the things that most kids my age could master, but she never let on. She was always proud of me and loved me, no matter what. Thanks Mom!
My high level of stress from this week has passed and I am so grateful. Stress has always affected my symptoms and since my correct diagnosis of DRD that hasn't changed. This past week, I kept losing my balance. Luckily, I never fell, but I came close a few times. The girls were with me in the garage and I was carrying John in his car seat and trying to open the door. Out of nowhere, I stumbled. The girls looked at one another and then at me. They both asked if I was okay, which was so sweet of them. Maintaining my balance isn't my only issue.
When my body is under stress or I'm lacking sleep, I twitch. I tend to notice it more in my hands than anything making it difficult to hold items in my hands. However, yesterday I was sitting on a stool next to a friend and I kept kicking her. Actually, it was more like a tap, but I couldn't control it.
I try to keep my stress to a low, but it isn't always possible. I'm trying really hard to put myself first, because if I'm not well, it will make it that much more difficult for me to take care of my family. This week I have been exercising 45 minutes a day on the Wii. That has really helped. Plus, it's fun. I tend to do Just Dance for 30 minutes and then different balance games on Wii Fit (thanks Gary!).
Even though I have been on my new medication for 2 years, I have so much to learn about myself. In the past, I was so limited as to what I could do. Now, I have to learn what my daily limits are. Because there are so many things I can phsyically do, I want to do them all at once. Unfortunately, that isn't possible. I need to pick and choose what needs to be done so my body doesn't have to deal with stress. This is all a good learning experience for me.
I am so grateful, that I can do so many things. I have a wonderful family that I get to take care of every day. What a wonderful gift that is!
The past two days have been unbelievably busy getting everything ready for a long weekend at the cabin. I can't believe how much I got done. I got more done in these past two days than I would have been able to accomplish in a week back when my life was more phsyically challenging. I made homemade tuna salad and potato salad. This amazes me because a couple years ago I wasn't always able to drain noodles. Yesterday, I cooked and drained the hot noodles with out giving it much thought. I didn't get frustrated with my hands not being able to cut vegetables and I didn't have to worry about falling to the floor. I was also able to make Special K bars with Winona. There's just something about baking with your daughter that I now get to enjoy. In between all that cooking, I had several large loads of laundry to get washed, folded and put away (Sharon helped me). Today, I was able to load up the coolers, finish packing and then load it into our vehicle. This was a lot to get done, especially since I had to stop and feed/change John in the middle of those tasks.
It brings tears to my eyes to know that I was able to get my family ready for a mini vacation at the lake. It was a lot of work and my feet hurt from standing on the hardwood floors for such a long time, but I did it. And I did it with ease! I have so much to be thankful for and I don't know if I will ever be able to express my gratitude enough.
I hope that over the Fourth of July weekend you can take a moment to reflect on everything you can accomplish in life. I know that raising a family is a lot of work, but it is SO worth it!!!
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!