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!!
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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 The past few weeks have been unbelievably busy for me. As you are probably aware, I write this blog for many reasons, but one is to advocate for the Dystonia community. I have been sharing my journey via this blog for nearly five years. In the beginning I thought, I hope I reach 50 hits at some point! Little did I know that I would get nearly 4,000 hits in ONE DAY, which would then lead to an interview on The Today Show!!!! Many of you have asked, How did this happen? A couple months ago, The Mighty shared a couple of my blog posts to their website. To my surprise, they asked if they could write a feature story about my journey for their website http://themighty.com/tag/jean-abbott/. Of course, I said yes, knowing that they work closely with bloggers to bring awareness for many disabilities out there. The day after that posted, I received an e-mail from an editor from The UK Daily Mail asking the same thing. A few days later, their story posted and my phone began ringing off the hook. A week later, The Today Show was interviewing my family! I know all of this is very exciting, but it has also been extremely stressful. My Dopa Responsive Dystonia requires me to get plenty of sleep, exercise and keep my stress levels low in order to keep my symptoms at bay. This has been a challenge these past couple weeks. I've had to rest more, stretch more and remind myself to ask others for help in order to keep my stress levels lower. Even with the extra effort my balance has been off, I've noticed more tremors in my hands, cramping in my muscles, my walk hasn't been as smooth and I drop more items than usual. With all that said, I am still very grateful for this wonderful opportunity and I could not do it without the support from my amazing husband, Steve. In fact, I don't think I could have done this without him. Scratch that...I KNOW that I couldn't have done this without him! I must give a heartfelt thank you to The Mighty and the UK Daily Mail for finding interest in my story, so I can have the privilege of helping others. I am incredibly blessed knowing that by sharing my journey, many people will learn more about Dopa Responsive Dystonia and potentially speak to their physician about their own diagnosis. Side note: It looks like our story should air Thursday May 7th on the Today Show. I will be sure to post a link to the segment after NBC links it to their website. Thanks so much!! Stress is difficult on everyone, but when I am dealing with this emotion it affects me in a whole different way. These past couple of weeks, I've experienced an increase of muscle cramps, tremors, balance issues, etc. I'm not sharing this as a way to complain or vent, but rather give you a look into the other aspect of me dealing with Dopa Responsive Dystonia.
As other people with Dystonia explain, we deal with flare ups form time to time. Mine are always dependent on how much sleep I'm getting, my stress levels, hormones as well as if I'm sick with a cold or other virus/infection. I work really hard to keep these annoyances at bay. For example, I do some time of exercise every day in order to keep my muscles strong. I try really hard to get at least 8 hours of sleep at night (not easy with three kids) and take a nap in the afternoon. This is my life. Some days are better than others. I'm just glad that these days are so much better than the "old days." Do you ever think about who you may have been in a past life? This is a question that I ponder every night before I fall asleep. And unlike many people, I know the answer to this question.
In my previous life I was a positive, optimistic, happy-go-lucky girl who just happened to be trapped in her own body due to cerebral palsy. That child wasn’t able to dribble a ball down the basketball court, run around the school play ground, hold a pencil with ease to complete daily homework or even use the restroom without the challenge of pulling her pants up and down. When that girl grew into adulthood, the idea of marrying and having a family of her own didn’t seem possible, because she wondered who could possibly love someone who has so many physical challenges? Luckily, that girl was wrong and she married a wonderful man who was able to look past all of that and fall in love with the women she was on the inside. She would later be blessed with three children and their family would be complete. It’s very hard for me to believe that the woman I just explained to you was indeed me. That girl had struggles and challenges every singe day of her life, yet here I am now capable of so much more. Every day I do so many things that weren’t possible such as: walking my daughter to the bus stop, cooking dinner, vacuuming, driving the kids to all their after school activities and so much more! It amazes me that I’ve had this new life for five years now!!! I work so hard to remember the person I was before that doctors appointment on Good Friday 2010. I make sure to give thanks to the Lord for my new diagnosis of Dopa Responsive Dystonia (DRD) every single day. I also make a conscious effort to appreciate everything that I’m able to do and promise God that I will NEVER take any of it for granted, even on those ever so busy days where the stress begins to rise in my chest. When I go to bed at night and think about who I was in my past life, I smile because I’m proud of who she was and pleased that she is making the most out of her current life…never taking anything for granted. A Special thank you to The Mighty for publishing this post (and other inspiring stories) on their website: http://themighty.com/2015/04/why-i-work-hard-to-remember-the-struggles-of-my-misdiagnosis/ |
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