For three decades I had limited use of my arms and legs due to Spastic Diplegia, Cerebral Palsy. The idea of completing simple tasks baffled me. As I’d swing at recess in elementary school, I’d watch my classmates chase one another, kick a football without falling on their face or jump rope and I’d wonder How do they do that? Then as a mom, I would hear parents complain about their long list of chores and I’d think to myself I would give anything to be a more involved parent. As many of you are aware, five years ago I got a new diagnosis (Dopa Responsive Dystonia), new medication and a new lease on life. These days, I still hear parents complain about their long list of chores, but now I think I’m so glad I CAN do those things and be grateful for each and everyone of them. That’s why I decided to make a list of what many people think of as nuisances, but I consider a wonderful gift.
Put clean sheets on a bed ….this once incredibly frustrating job took me so long that I rarely did it myself. Instead, mom would do it for me, something that a 30 year old should be able to do for herself.
Bake cupcakes, cookies, homemade bread and bars (yes, I’ve gained a few pounds since my correct diagnosis). My cakes always looked pathetic and would never be served to company. Now, I bake and decorate cakes from scratch and get asked, “What bakery did you get this from?”
Drive my daughters to basketball practice, Girl Scouts, school, orthodontist appointments, doctor appointments, church classes, friends houses, etc. I can walk them into each one of these places. Yes, it’s more time consuming, but I’m able to build friendships with other mom’s now. Days of feeling alone are no longer.
Exercise….I had been going to the gym since I was 14. It was something that I HAD to do to maintain muscle and I was fortunate that my mom was always willing to help me with, even as an adult. Now, I can go on walks with freinds or even attend Yoga classes at the gym! Yoga is one of my favorites because I love to challenge myself and see how I continue to improve. Every class puts a smile on my face as I think to myself this would have been IMPOSSIBLE before.
Ride Roller Coasters…back in the day, my body would have been in knots after something so fast and scary, but these days I CAN do it! Granted, I don’t like them and don’t quite understand why my girls love them so much, but at least I was able to try it and can cross it off my list!
I can tuck my son into bed at night…Because I couldn’t do this with my daughters, I felt like a failure as a mother. Now, when I kiss by toddlers' forehead before leaving his room, I tear up thinking How did I get so lucky do be able to do this every single night?
Household chores…Before my new life I could only do one chore a day and felt like my house was never clean unless my mom came to help or my husband did it. Being able to clean a toilet without fearing of falling face first into the bowl is a relief! Being able to load the dishwasher without pain surging through my toes is a gift! And being able to wash the close that my kids are physically capable of getting so dirty while playing outside is a blessing.
Grocery Shopping and other errands…I always had to be driven to the store and then helped onto my mobility scooter to complete the chore that most dread to do. Being a young women riding up and down the isles caused plenty of stares and sympathy smiles that I never got used to . Now, as I shop, I blend in with all the other customers and think they have no idea what my life used to be like.
My list could go on and on. I am beyond grateful for my new found mobility and it doesn’t bother me that I still have days where my balance is an issue or the knots in my back seem unbearable. But, I still love each and every day and am thrilled that I don’t have to deal with all those issues of the past ,because I have my independence, something that many people don’t have! So, please, take a look at my list and ask yourself do I ever complain about cooking for my family, running errands on a daily basis or cleaning the house? If the answer is Yes, remind yourself that those annoyances are something that others pray for. I know this, because I used to be one of them.
One of my favorite things to do since my receiving my new diagnosis is to cook. It's something that I used to despise simply because it was so physically challenging. I could barely use a can opener much less chop and dice all those veggies that taste so good. All that has changed and now I cook a homemade meal nearly every night for dinner, so when my daughter passed her summer school class (testing out of 8th grade math so she can take 9th grade math as an 8th grader), I knew I had to do something special.
Winona spent hours studying for the first six weeks of summer, so the least I could do was spend a couple hours making some of her favorite foods. I made lasagna (with a sauce I made from scratch and froze a couple weeks ago), Olive Garden's Zuppa Tuscana and Peach Cobbler! I know that this may not seem like a big deal to some, but to me this was huge, because Winona used to have to make ME dinner!
When I was at my worst, I physically couldn't move around the house in the late afternoon/evening and making dinner just wasn't an option. My sweet giving daughter would make peanut butter and jelly sandwiches and we'd eat them picnic style in my bedroom as we watch Curious George and Dragon Tales. At the time, I felt terrible that I wasn't able to be the mom I so desperately wanted to be. These days, I'm able to be the mom I always desired to be and SO MUCH MORE!
Last nights dinner was a success! Yes, it took me a couple hours to prepare and I'll feel the knots in my back for a couple days, it was worth it! If I can make these dishes so can you!
Olive Garden's Zuppa Tuscana http://www.momontimeout.com/2011/11/olive-garden-zuppa-toscana-soup/
Peach Cobbler http://www.gonnawantseconds.com/2015/06/southern-peach-cobbler/
These are all easy to make, but are delicious as well. Happy Cooking!!!
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.
For the most part, I was a happy-go-lucky kid who didn’t let my Spastic Diplegia, Cerebral Palsy (CP), stop me from achieving my dreams. I knew that I could do anything as long as I believed in myself. I knew I could learn to drive, earn a college degree, and so much more. Most importantly, I knew that I could live a happy, fulfilled life, without the love and support of a husband. It’s true…I never thought I would marry.
Yes, I was happy and lived life with a lot of positivity, but I was also a realist. I believed that, without a doubt, there wasn’t a man out there who could possibly be attracted to a woman who was contorted from head to toe and couldn’t walk from the car to the store entrance without a sea of eyes glued to her every step. I was comfortable knowing what I had to deal with on a daily basis...but, honestly, who would sign up for such a life?
As my friends began to date and I developed my own crushes, I couldn’t help but let sadness get the best of me from time to time...the sadness that comes from thinking no one in the world could possibly have a crush on me. I wanted to experience LOVE! I wanted to walk down the beach holding a lover’s hand. I wanted to know what it felt like to have that first kiss or to wake up in a man’s arms. But the closest I would get to these feelings would come from the pages of a Harlequin romance novel. I would only share these thoughts with my mom, who would reassure me, “Jean, there is someone for everyone. And you will end up with the nicest one of all.” My mom always had great advice and a hug to go along with it, but I thought in my heart that this time she was wrong. As a teenager, who expects Mom to be right about your love life? Well, this time I was thrilled that she proved me wrong!
By the time I was 20, I met an amazing man, who attended the same college as me, but on a college basketball scholarship. I thought he was as nice as could be and far better looking than any of those men on the covers of those romance books I enjoyed reading in my teens. Immediately, he crossed my mind many times a day, but I knew that I didn’t stand a chance! How could someone so tall, dark, handsome and athletic be interested in someone like me? I was the girl in the mobility scooter! Instead of focusing on a romantic relationship, he slowly became my best friend. Two years later, he was the love of my life, and I was his.
July 29, 2000 was by far the happiest day of my life, because I said “I do” to a lifetime partnership of love and support. On our honeymoon I had to ask him why he loves me. Part of me still felt that sense of I’m not worthy of his love and he could have done so much better. Without hesitation, he looked me in the eyes and said, “because you are always so positive and don’t let your disability define you.” And I knew he was right and I did deserve his love.
I had always tried to live my life doing the best that I could, with a smile on my face. Yes, I had difficulties walking more than a few steps, jotting down notes, or even holding a book to read. Yet, my mobility and dexterity was just a small part of who I was. Who I am. Sure, my athletic husband would never run a marathon alongside his wife, but he knew that he could count on me to cheer him up after a stressful day of work, console him when dealing with the loss of a loved one, and help raise children with strong family values.
I write this blog entry not to brag about my amazing husband, but to tell everyone that there is someone out there for you. I ended up with a man who I thought was way out of my league... simply by being me.
Here we are 15 years later, and with so many changes in our relationship. We have three children, and I can now walk because I discovered that I had been misdiagnosed all those years of my youth (which is an entirely different blog entry). Yet one thing is still the same, and that is our love for one another.
Happy 15th Anniversary, Steve, the love of my life.
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!
Tomorrow, I will be 39 years old. I've had both family and friends ask me how does this make you feel? My answer is usually something like, "It's just a number?" The truth is, I feel better at 39, than I ever did at 29 or even 19!
Yes, I may be on the verge of the dreaded 40, but isn't it just a number? To me it is. I'm able to do more now at the ripe old age of 39 than I could even think to try at age 10. I love that I no longer worry about being put into a nursing home while raising my young kids. I LOVE that when I'm beyond exhausted, I still have the physical ability to put my three year old to bed, rather than he putting me to bed, like his sisters had to do when they were toddlers. I love that I can drive myself anywhere I want to go and walk nearly anywhere I want. Most of all, I love that my little boy will NEVER know a mother who can't take care of herself, much less her own little boy. And most of all, I love that I don't need or want anything for my birthday, because I truly feel like I have more in life than I deserve. And that includes all of your support! Thanks so much!!!
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.
It's summer vacation. So for me, that means busy, busy, busy! In fact, I'm exhausted! I've put nearly 200 miles on my car in three days and I haven't even left the county! At one point yesterday, I was feeling...crabby. I was frustrated that my house was a mess and I was too busy running kids from one end of town to the other and then it hit me...Jean, appreciate the "little things in life."
I had to share this because even I find myself taking things for granted. Five years ago, I couldn't leave my house without the help of an adult. Now, here I am taking Winona to math class, basketball camp and friend's houses. Plus, Sharon, John and I have run so many errands (groceries, Target, Costco, oil change, etc).
I am so tired, yet I'm so happy that I can still function! Life is a gift and it is so important to take time to appreciate ALL OF IT!!!
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!