When I was 25, just weeks away from my 26th birthday, my life changed forever. And honestly, I thought my life was over.
I was diagnosed with Friedreichs Ataxia (FA) on August 19, 2013. That was the first day I had ever heard of FA. Since FA is so rare, my neurologist had very limited information to provide, and even less experience with it to share and comfort me. I was terrified, overwhelmed and shocked. Why was this happening? What can I do? What does this mean for my future, if I even still have one?
I did a little preliminary research the first week after diagnosis and it all seemed so grim. I thought I'd be using a walker within a year, a wheelchair a year after that, and then in heart failure by 30.
I thought my life as I knew it was over. I gave up on my future. I mourned for the children I wouldn't be able to give to my wonderful husband, the adventures and vacations I wouldn't take with my family, and most heartbreakingly, the loved ones I would leave behind once this horrible disease was done with me.
My village saved my life. My family allowed me to mourn as we absorbed our new reality while fiercely gathering as much information as possible. Finding out our next steps. My friends covered me in prayers and support. They asked questions and held my hands as we found out the answers. My friends and family held me together.
I didn't know what to say to God. I felt so betrayed. I had such grand plans for my life. Plans that I thought were ordained by Him based on the path that he had led me down thus far. And then to have those ripped away from me by a disease I had been given before I was even born? That didn't make sense. That wasn't MY God. He wouldn't do that to me. He owed me more than that.
Luckily, my friends and family didn't loose faith like I did. They kept faith. They kept fighting. And they encouraged me to do so as well.
After a season of mourning, I decided it was time to snap back into the drivers seat of my life. I became my own advocate. My village and I were going to navigate this curveball and find a way forward.
After a lot of praying and sleepless nights filled with conversations, tears and delirious laughs, Kyle and I decided we still wanted to have a family. But we wanted to be informed to know what that would look like. What would pregnancy do to me? Was it safe? How would it affect our possible children, grandchildren, etc.? We connected with the fantastic folks at the Friedreichs Ataxia Research Alliance (FARA) to find out more.
We found out more about pregnancy and FA (previous blog post on this subject here). We then decided that since Kyle was not a carrier (meaning our children would not get FA) we should try to start a family.
In the midst of making that life changing decision, we threw ourselves into Team Kendall. We weren't going to just accept this diagnosis. We wanted to be active participants and make a positive change. We set out on a mission to raise awareness and funds for FA and FA research. In February 2014, weeks before our first rideATAXIA, we found out that we were pregnant with our beautiful, perfect son Brooks.
So, as I turned 30 this weekend, I had a deluge of emotions. I felt what everyone feels: nostalgia, shock that I'm already 30, a sense of pining for the young carefree days of being a kid, and everything else that comes with a big milestone birthday. But I also feel an overwhelming sense of peace, accomplishment and pride. Not pride in myself, but in my life and in my village.
I thought my life was over at 25. But now, in the blink of an eye, I'm 30 and my life is more than I could have ever dared hope for. I have the best husband on the face of the earth. He is unfailingly kind, warm, funny, supportive, optimistic and generous. He is my strongest support system. Kyle has taken this uprooting of our lives with such grace and positivity. He never once lost faith. He never once asked "why us, why me?" He held steadfast. If you want a definition of the vows "through good times and bad, in sickness and in health," look at Kyle. He is simply amazing.
My children are my biggest accomplishment. Brooks is funny, kind, inquisitive, sensitive, loquacious, and outgoing. I am so proud of the beautiful soul he is growing into, and I am so honored to be his mom. Collins is the sweetest little bundle of baby ever. She is gentle, sweet and loves to smile and observe the world around her. I strive to be the mom that they deserve and I am so thankful for the motivation they provide me.
My parents are the most selfless, generous, kind, unwavering, optimistic, God fearing parents ever. I wouldn't be who I am today without their constant love and guidance. I thank God every single day that I was born their daughter, even if that means I was born with FA. I truly wouldn't have it any other way.
I am proud of my 30 years here on earth. Yes, I wish that FA wasn't part of my story. But I am thankful that it is that - just PART of my story. It isn't my whole story. It will not define me. Thanks to my village, I have lived my life to the fullest in spite of FA. With them by my side, I can handle whatever FA does to me.
Since my diagnosis, I have recommitted to my faith, given birth to two beautiful children, traveled, moved across town, made new friends, deepened friendships with old friends, and laughed through trials and tribulations. I am working hard at physical therapy every week. I am pursuing and trying new therapies and treatments. Yes, my FA has progressed. Yes, it is still a struggle. Yes, I curse it daily. But life goes on. Thank you, Team Kendall, for supporting me and loving me through this journey. Together, we WILL cure FA. But until then - live. laugh. love. Because what else is there to do but that?