A Look Back

Hello and welcome to the last post of 2022! I can’t believe how fast this year has gone by. That’s what everyone always says, right? It’s just feels more true each and every year. At some points in our lives, we want time to slow down so we can bask in our comfort, peace or joy, and at other times when life is unbearable, we just want it to speed up and for that time to pass quickly. The one thing we all as human beings have in common, is that we can’t control any of that! 

For me, in many ways, 2022 has been a wonderful year. I started the year off being chosen as MDA’s National Ambassador, which as I’ve said, was just a dream come true. It gave me a new purpose, and has really pushed me outside of my comfort zone in SO many ways. I’ve definitely grown and learned a lot about myself and others. When I accepted the role, I just had to do it afraid. I knew it would challenge me, and public speaking, well I’ve come a long way in that arena, as far as being comfortable telling my life story. My first audience was a crowd of hundreds of doctors and scientists in Nashville, TN at MDA’s clinical and scientific conference. Presenting Dr. Carsten Bonnemann with MDA’s first- ever Legacy Award for excellence in clinical research was definitely a highlight. What a wonderful experience!

I also had the opportunity to receive three stem cell treatments this year. While there haven’t been any earth shattering improvements, they have helped me in small ways I believe, such as with overall endurance in my daily life. It has also just helped me feel like I’m doing something to help myself and my physical condition. Living with an incurable disease that causes daily physical challenges is hard. It’s a hard thing to face each and every day of your life. Not knowing how long you have to do certain things because your disease is progressive. Watching as those things slowly fade away.  That thought is never far from the surface. So, in my mind it’s helping me. I plan to continue my treatments for the time being. 

Always wear my sparkly kicks for treatment day!

How about my adaptive water skiing adventure with my lifelong bestie? That’s something I’ll never forget! And then going back for a second day of it to share it with Jamie. What a couple of days those were! Emotional doesn’t even begin to describe what I felt as I got the hang of it. Happy tears streaming down my face as I experienced the freedom of flying through the water, skiing after many wipeouts and about 10 gallons of lake water up my nose! It was physically one of the hardest and most rewarding things I’ve ever done. Contemplating going again in 2023. We shall see. I’m also up for a brand new adaptive sporting adventure next year. The wheels are turning! 

Such a freeing feeling!

Sending my oldest son off to college and watching my youngest son get behind the wheel of a car for the first time, were certainly memorable life experiences, with moments of joy mixed with heartache. So proud of my guys. Did I mention I love my family?! Grateful. 

This year I also participated in my first Burn Boot Camp Be Their Muscle event, speaking to our Indy area groups here locally before their outdoor workout. Turns out, our region ended up raising the most money for the Muscular Dystrophy Association! It was an awesome time, and I got to meet some really great people with hearts of gold, and some who also have family members living with Muscular Dystrophy or ALS.

Fantastic group of people 💛

Participating in my first Virtual Summit and Hill Day with the Muscular Dystrophy Association was another time when I just said “yes“, even though I was afraid. It was all so new to me, but I learned so much, and I met some amazing, “seasoned” fellow advocates along the way.  Speaking with members of congress and/or their representatives to advocate for important issues at hand for the disabled community was an awesome opportunity. 

Telling myself, I’ve got this!

Celebrating 23 years of marriage to my high school sweetheart was pretty awesome too. He jumped into the National Ambassador role with me, has supported me, and helped me so much this year. He’s been by my side as I’ve taken the stage each time, helping to calm my nerves and reminding me that no one knows my story better than me. He also “edits” my blog posts each week. I love it on the weeks that he says, “perfect, no changes needed”, haha! I usually have some sort of grammatical error, or have overlooked something. 

My biggest supporter!

Happy to finally meet in person! Love our MDA fam!

Not long after celebrating 23 years, we crossed our 3rd marathon finish line together! Sitting back in awe, as over 50 of our family and friends joined our team Humbly Courageous for our hometown marathon. They helped us to raise over $11,000 in support of the Muscular Dystrophy Association. That seriously touched our hearts beyond explanation. Speaking of marathons, have you heard the news that we will be participating in the 2023 Boston Marathon as a duo bike team with MDA’s Team Momentum?! Lots more to come on that journey, but we are ecstatic for this opportunity. I’m a tad bit nervous about the winter training, but excited to share the process! 

If you are local, look for this billboard!

Team Humbly Courageous 💙

I have continued on my quest to keep my muscles as healthy as I possibly can. For over three years, I have consistently moved my body and exercised at least 3 times a week to the best of my ability. I’ve missed very few workouts, and I’m really proud of that because that’s not easy! I basically have a “no excuse” policy with myself, and honoring that has helped me stay on track.

My happy place is in the water. 

I had the opportunity to connect with many in the MDA community and a lot of MDA staff that I knew behind a screen, but had not the opportunity to meet in person, at some of the Indianapolis Colts games, supporting MDA’s national spokesperson, Nyheim Hines. As many of you know, we were so sad to see him leave the Colts and head to the Buffalo Bills, but I am very happy for him, and will enjoy continuing to support him whatever team he plays for. His kindness and generosity will not be forgotten!

I wore the sparkly boots, and I danced in a new way. I’m so glad I did! 

Family ❤️

Most importantly, I would like to say that I have been beyond blessed through writing this blog. It has been one of my life’s greatest pleasures to be able to widely share my story, and reach others who are feeling alone like I did for so long. I’ve highlighted a lot of great moments from this past year, but that doesn’t mean life is always easy. I would be remiss not to share that there have been many emotionally and physically challenging moments for me this year. It is so humbling to realize when living with a progressive muscle disease, that I can’t control my muscles from failing me, no matter what I do. It’s truly terrifying and heartbreaking. Hearing from others who are also deep in their struggle with these agonizing thoughts wrecks me, but I’m so grateful for the connections. I want so badly to help them. Through writing my blog, I’ve given people a place to come and say, “this is really hard”, and be a shoulder for them to lean on. We are all, humbly courageously, in this together. The advice I can offer is, just keep fighting, push yourself beyond what you think your limits are, and you may just surprise yourself. Give yourself permission to grieve the losses. Be gentle with yourself. Then pick yourself up, and just keep going, day by day. Do your best to live with a grateful heart, focusing on the good. 

I love each and every one of you. I’m excited to keep sharing my journey with you, and to see where Humbly Courageous goes next year. THANK YOU! 💚