At the age of 7, I attempted to ride a horse and failed. And when I say that I failed, what I really mean is I’m lucky I wasn’t seriously injured. In fact, I felt like a cowgirl doing tricks at the World’s Toughest Rodeo would be an understatement. The horse I was on took off running and I had lost complete control and I found myself holding on for dear life...on the underside of the horse! I swore that I’d never get on a horse again, until the following summer when a friend begged me to go horseback riding with her. I told her that it was something I couldn’t do, but she had so much faith in me and assured me that I would succeed the second time around. So, I faced my fear and got back on the animal only to find myself on the underside once again as it galloped down the dirt path. As terrifying as this was, I soon learned to tell the story with much laughter, but I knew that I would NEVER ride again. No matter what!!! Or so I thought.
Last week, I had the privilege of speaking to the staff at True Friends, a camp whose mission is to “provide life-changing experiences that enhance independence and self-esteem for children and adults with disabilities.” While I was honored to share my message of trust, positivity and gaining a better appreciation for the little things in life, they were able to help me overcome my fear of horses!
Prior to taking the stage, I met with their True Strides staff (Shari, Linda, Kim) who assisted me with a one hour horse therapy session. They were incredibly patient, friendly, supportive and just as excited to help me face my fear as I was to overcome it! I not only got on the horse, but I did so without hesitation simply because I knew that these wonderful woman would keep me safe. Thanks to the staff at True Friends, Riding Kal was an amazing experience that I soon won’t forget.
It’s no surprise that adults and children come from all over the United States to experience the magic of True Friends! I encourage you to check it out; maybe it’s just what you need to put an extra smile on your face this summer.
I have always loved the idea of traveling. It didn’t matter to me that I couldn’t walk to all the important sites and that I could only see the beautiful views from the car window. I still wanted to see as much as I could. Luckily for me, my husband enjoys site seeing and back in the day he would carry me to any sites that I had to get a glimpse of.
This past week, I was fortunate to spend a week up in the Boundary Waters at the lovely Kawishiwi Lodge. It’s as close to the beauty as one could get while still staying in a cabin with running water and a nice cozy bed. Sure, I’d enjoy taking off for a week and roughing it in a tent, but at this point in time, I’m not quite sure how my Dopa Responsive Dystonia would handle it (the 5 hour drive was hard on my back and neck). But that doesn’t mean that I don’t want to get out there and see some of the Boundary Waters of Minnesota.
As many of you know, if I’m given an opportunity to try something new, I have to do it, even if that means pain afterwards. So, while in the Boundary Waters, Steve and I took a two hour paddle into God’s Lakeland via a canoe. The beauty is unexplainable and the sounds can be deafening. And I loved every second of it! Steve and I saw a little duckling chirping for its’ mother, turtles sitting on logs in the water and rocks bigger than many buildings downtowns Minneapolis. These are all things, that one can’t see from the comforts of their own car and I’m grateful that I have the physical capabilities to get out there and experience it first hand, even if that means extra knots in my back for the next couple days.
I’m physically exhausted. Beat. Spent. Done. Yet, I’m thrilled that I was able to help my husband and daughters with a huge chore up north this weekend.
After my husband (and neighbors) took down the largest tree on our property, I helped remove all the smaller branches and burned them in a nearby fire pit. I used shears to clip the branches into pieces small enough to place them safely on the fire. Back in the day, I wouldn’t have had the strength to do this hours on end. Yet, yesterday I did! And every time I placed another branch over the flames, I thought to myself I’m so lucky to have decent balance! Sure, my balance isn’t great and it’s something that I work on daily, but I could actually do this task without the concern of injuring myself. What a gift!!!!
Even while I worked, I knew that my body would feel the fatigue from the hard work for several days afterwards. But, I had to keep working. I can’t explain it. Deep within me, I desperately wanted to contribute. I wanted to help with something that once would have been impossible for me. I may feel like toast tonight (and the next few nights) but it feels wonderful to know that I was able to participate in an important family task.
To make things even better, this was my view after I placed the last branch on the fire. Life is good. No, I take that back…Life is GREAT!
Recently I was asked to participate in the Jump For Dystonia campaign by sky diving! For those of you who know me well, you know that I wouldn't have to think long about that one...NO! I am about as chicken as they come (I was proud of myself for going on a roller coaster and screamed, "I'm going to die" three times in less than two minutes). Yes, I'm all about trying new things, but I also know my strengths, weaknesses, fears, hopes and dreams. And jumping out of a plane isn't something I see myself doing in the near future or ever, for that matter. However, I knew that there had to be something out of my comfort zone that I I could do to promote awareness for Dystonia. My decision was to jump into the lake (I can't swim) all while promoting awareness for the Dystonia Community and hopefully physicians who have never heard of Dopa Responsive Dystonia (DRD).
I share many links right here on my website under the "Resource" tab about Dopa Responsive Dystonia, but I think you should know that I never thought I'd become an advocate, simply because I had never heard of it!!! My entire childhood, I thought I had Spastic Diplegia, CP. After seeing dozens of doctors over the course of three decades, I still had never heard or read about Dystonia. It wasn't until that crazy "Good Friday" in April of 2010 that a neurologist told me, "I think you have Dopa Responsive Dystonia." In a matter of 48 hours, I went from being pushed in a wheelchair to standing independently!
To say I am grateful for my new diagnosis and treatment, would be an understatement and not a day goes by where I don't give thanks to God for all that He has given me. Many people ask me, "Aren't you angry that you went so long misdiagnosed?" Honestly, I don't hold any resentment or anger about my medical situation. I feel so blessed for my new found mobility and know that there are others out there misdiagnosed just like me! That is why I do everything I can to educate others about Dystonia, particularly DRD.
Click the image to watch my jump! And then take a photo of your jump (doesn't have to be into a lake) and share it with me here or on my Facebook page. Lets create awareness together!
This past week was spent with family doing what I love most: chatting, eating and laughing. I'm really not sure if there is anything more important in life than family and friends. If I had to choose between my new found mobility and my wonderful support system, I'd immediately say "It's time to go get another mobility scooter." I guess that's why I feel like it's SO important for me to give thanks to God every night for all the special gifts he has given me.
As I mentioned at the beginning of this post, we had a wonderful time with family. Yes, it's a lot of work for Steve and I, but I don't think we'd want it any other way. We love bringing a smile to kids faces by giving them a place to swim and fish as well as a tube to be pulled on behind the boat. Sure, I had to pack extra food and linens for the week, which is more work, but as my husband says, "It's a lot of work to have fun." And we plan on doing it again this weekend! In the meantime, I'll continue to give thanks and count my blessings each and every day.
Family and friends have always been an important part of my life. This weekend, I was able to literally stand up by my cousins side as she said her vows. This was the first wedding that I had been in since my correct diagnosis. And it was wonderful!!!
Back in the day, when I would be asked to be a bridesmaid, I would happily say yes, but as the day came closer my nerves would begin to build. I wasn't nervous about the typical things will my dress fit? or what if I trip on my dress walking up the stairs? Instead, the thoughts that ran through my head were more like How am I going to keep from tripping as I walk down the isle? or Where will I go when I can no longer stand up front? and of course how bad will my tremors be? These internal thoughts kept me from being there for the bride and simply enjoying the day.
This Saturday, I was able to walk down the isle with confidence and stand through the entire ceremony without worrying about anything!! I was able to focus my attention on the sermon and listen to the bride and groom share their special vows without wondering am I gong to fall? For me, this was an amazing gift!!
I wish Jessie and Randy a lifetime of happiness and thank them from the bottom of my heart for including me in their very special day!
It's hard to believe that my little boy is three today. I was so excited to make him a Mickey Mouse cake for a couple of reasons.
First of all John loves Mickey Mouse just as much has he enjoys eating chocolate cake!! But more importantly, I just enjoy making cakes for my kids on their special day. Sure, I may have had a DRD moment (sudden jerk of my hands) and the sprinkles flew every where expect where I wanted them to go, but my little boy doesn't care. He loves how the cake turned out and keeps asking, "Is it time for cake yet?"
I was never able to make my daughters cute cakes when they were his age. I would buy a princes cake of some sort from the local bakery and have to call it good. Sure, they were thrilled to have a super cute dessert, but I love it that John will grow up having a homemade birthday cake year after year.
Sure, this mouse may have some sprinkles in the wrong places, but back in the day I could barely frost a cake. And the thought of piping homemade butter cream, never even crossed my mind. Plus, the way I see it, if John doesn't care about the mistakes his mommy made, then neither will I!
Happy Birthday, John!!
I always had really big dreams as a little girl. The thought of being on TV thrilled me. Someone needs to pinch me, because I'm pretty sure that I achieved one of those dreams today! How can it be that my face along with my words were on The Today Show? I was given a platform to advocate about Dopa Responsive Dystonia to millions of people. What an incredible gift that fuels my fire to work even harder to achieve my other dream...to write and publish my life story.
Since my correct diagnosis, I have been writing memoirs about growing up with Spastic Diplegia, a form of Cerebral Palsy. I would love, love, love to see it in print. I want to inspire those who are dealing with difficult medical conditions, express that there really is someone out there for everyone, and to remind everyone to appreciate the little things in life. Until then, I look forward to sharing my blog with all of you!
Thanks for all the support!!
Here's the link to the Today Show!! http://www.today.com/health/woman-misdiagnosed-30-years-gets-relief-simple-pill-t19806
After driving 650+ miles in 11 hours with three kids (13,11 and 2) alone, I am beyond exhausted. And if I wasn’t so tired, I’d be grinning from ear to ear because I was actually able to do this today.
I’ll be honest…I wasn’t sure if I could do it. I doubted my new ability and thought I would have to get a hotel room about 6 hours into the drive to rest my body. But I did it! I was able to take my kids into the rest stop for bathroom breaks, walk into fast food restaurants to grab a quick meal and pump gas. Each one of those tasks was something that I couldn’t do before. At least not without the help of someone else. But today I did all of it! And without the help of another adult. And for that, I am unbelievably grateful.
Life is a gift. Daily we are given opportunities and it's our choice as to whether or not we make the most of it. Some days may have more unique gifts than others and for me, today was that day.
Yesterday, I watched my kids and their cousins go on roller coaster after roller coaster with huge smiles on their faces. I'd watch in wonderment and try to figure out why do they like that or how do they do that? After talking with my sister-in-law, Michelle, about how scary it seemed to me, she kindly offered to go on Powder Keg with me. I couldn't help but hem and haw, but finally decided that "yes, I'll do it." And I know that this may seem really silly to some, but every time I rolled over during the night, I thought about the start of the rapid coaster. I too would find myself going 0 to 58 in 2.8 seconds!
I have to be honest, there really wasn't any strong desire to go on this terrifying excursion other than knowing that not long ago, going on this ride would't have even been an option. Any stressful or tense situation would have sent my muscles into a big knot and not just during the ride, but likely for the rest of the day, if not two! Plus, I couldn't help but think about those who would give anything to go on a jaunt like this but maybe can't, do to limitations similar to what mine use to be. So, yes, this really was something that I HAD to do.
Once the attendant had me locked into position and the cars moved into the starting position, I looked at my sister in law and said, "There's no going back now." I became a ball of nerves and she graciously offered to link arms and I wasn't about to turn her down. I looked over at the rest of my family (many of whom had already ridden the ride) and smiled at them as the pressure began to build in my body. And before I knew it, we were off on the ride of our lives.
Yes, this was incredibly scary, but I am so happy that I took this opportunity to face my fear and can wake up tomorrow with no regrets. Is there anything better than that?