My children have always come first in my life. I love everything about them and am so grateful that despite my physical limitations, I was able to become a mom.
As I was getting ready for bed last night, the photo on the wall caught my attention. My husband gave me this picture over 10 years ago (before my Dopa Responsive Dystonia diagnosis). He knew how much I loved our daughters and saw me in this photo, which is so incredibly sweet. Back in the day, I loved to look at this photograph and imagine being able to walk hand in hand with my girls, but knew deep down in my core that day would never come. Or, so I thought. Life is full of surprises. These days I wake up feeling like the luckiest mom in the world. I can do things with my son, that I never dreamed possible with my daughters, which is why it's so important to stay positive and never give up hope. Miracles do happen and they can happen to you! Never give up!
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Can you imagine living the majority of your life trapped in your own disabled body only to be freed because of a misdiagnosis? That was me. That was my life. Quite often I’m asked questions like, “Aren’t you angry that you missed out on so much in life?” or “How do you stay so positive?” and “would you have needed all those surgeries if you had received a diagnosis of Dopa Responsive Dystonia (DRD) as a young child?” These are all great questions, but I can’t believe that no reporter, individual listening to me speak or friends have ever asked, “How did this affect your brothers?” Honestly, I don’t know for certain how they felt about all of this, but I do know that it affected them immensely growing up. My limited mobility had a huge influence on what we did together as a family. When we visited National Parks, we never went on a hike, much less a long walk to get the perfect family photo. When we visited water parks, my teenage brothers would go off on their own so my parents could take me for a quick round of mini golf, ice cream and a few souvenir shops. And when we had no choice but to get to a destination by feet, my brothers would take turns giving me a piggy back ride. This was just a part of our normal lives. At the time, I never gave it a thought. But as an adult looking back, I realize all the sacrifices they made simply because their little sister had a knee-knock walk which made it impossible to participate in any activity that most kids loved and looked forward to. Truth be told, they got the short end of the stick the day I was born. Yes, I may be the one who had to physically deal with spastic arms and legs day in and day out, but so did they! Why is it that no one ever thinks about that? Or is it just me? Why didn’t I ever think about how it affected my brothers? I guess I was just doing the best I could to get through life. So to my brothers, I have to say Thank You! I thank you for your unconditional love. I thank you for never showing me how frustrated you must have been for all the times I held our family back. But most of all, I thank you for treating me like a normal sister! I am blessed to have you both in my life! As many of you know, I live in the great state of Minnesota! Or as my mother-in-law says, "Minne-SNOW-ta."
The day began with rain and we all knew that it would be turning into snow by 2pm. As I ran my errands, I heard so much grumbling. Ugh...Snow or I'm not ready for this! And the most common, the traffic is going to be horrible! I get it, snow can cause many inconveniences: delay in travel, more work (shovel/plowing the driveway), and slippery sidewalks, but you don't have to join in the negativity. You have a choice! You can look out the window and curse mother nature OR you can embrace it! If you stop and look at the "white stuff" and I mean really STOP and look at it, I'm sure you will see so much beauty. As it slowly begins to stick to the trees, it changes everything. It's a new beginning. Are you willing to make this the year that you don't complain about the weather? Is this the year that you don't join in on the negativity? Or is this the year you finally book that trip to Mexico? Do whatever you've got to do to stay positive this winter! The choice is yours!!! There is so much I want to tell you, yet I know that you won’t believe the half of it. I know that this has been a difficult year for you as you deal with your sick Grandma, the stress of college and trying to maintain your mobility. I just want you to know, that no matter how hard life gets, it WILL get better. You are going to be amazed by how wonderful your life turns out. Don’t ever lose your positive attitude and don’t ever give up HOPE! The next time your mom tells you that you will get married and have a family of your own, don’t roll your eyes at her! She’s right when she says, “You’ll end up with the nicest one of all.” Despite all the physical challenges you deal with everyday due to your Spastic Diplegia, there is a wonderful man you will meet in college who will not only become your best friend, but he will choose you to spend the rest of his life with. He doesn’t care that he has to help you walk. He doesn’t care that he has to help you shower, brush your hair or even assist you to the bathroom. He loves you because you are positive, happy and don’t ever focus on your inabilities. So, I know you always thought you’d never have children, but would just be the “fun” aunt. I gladly want to tell you that is wrong! In fact, you’re going to have three happy, healthy children. The first two pregnancies are going to be very challenging, both mentally and physically because of the spasticity you deal on a daily basis, but the third pregnancy will be a breeze, which brings me to the most exciting part of this letter. You’d better brace yourself. Are you sitting down? Of course you are. Here’s the BIG news: When you are 33 years old, you are going to be told that you have been misdiagnosed, be given new medication and will be on your way to living an independent life. I don’t expect you to believe this, because some days I still don’t believe it myself. So on those days where you feel like it’s just too hard and that family and friends may be better off to have you stay behind, remember this: Don’t ever give up, because miracles do happen. I know this because I’m 40 years old and I’m not in a wheelchair. I’m not in a nursing home, I’m not alone. Instead, I’ve got a family of my own and I can take care of them. I know that you’re having to deal with a lot to get to where you are today, but it’s so worth it! You wanna know the best part? You’re going to start blogging, you’ll publish a memoir called Misdiagnosed, My Thirty-Year Struggle with a Debilitating Disorder I Never Had, and in doing so you will help 20+ people from around the world get a correct diagnosis, just like you. So, Jean, I want to tell you to hang in there. Life will not only get better, it’s going to become amazing. Stay strong and NEVER give up! Love, Jean (the 40 year old you) Wow! How can it be six years already?
So much has changed these past few years. I love that I only need to take 3 pills a day, compared to the 15! I love that I've been able to share my story with the world and help others receive a correct diagnosis, like me. And I LOVE that Steve and I were able to have a third child, our beautiful John. So much has changed, yet, the love and support from my family continues to grow. I feel so much warmth in my heart as I reflect on this on such a holy weekend. Good Friday and Easter Sunday will never be the same for me again. I never believed that a new medication would be the answer to my prayers. And I certainly never believed that I would be able to live a life of independence. How lucky am I?! I've had numerous people who have read my memoir reach out to me and say, "I will never look at Easter the same again." On this six year anniversary or should I say birthday, I will continue to give thanks for all that God has given me as well as how much Jesus sacrificed for me...for us. May you feel a closeness to the Lord on this very special weekend. Happy Easter! |
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