What life challenges have you/are you overcoming?
I am the mother of an amazing 21-year-old son named Jon Alex. “J.A.” as we like to call him, has profound special needs and requires total care round-the-clock. Two years ago, my husband passed away after a prolonged health battle. Prior to his death, he lost his foot to diabetes and required daily dialysis. During his illness I was responsible for administering in-home dialysis and providing wound care. That level of responsibility was one of the greatest challenges I have ever faced. His health and well-being were literally in my hands. It was incredibly humbling to be responsible for him and for our son at the same time. Currently, I am facing new challenges as I learn to navigate life as a solo parent while leading the ministry that my late husband, Jeff, and I founded in 2005. The ministry is called Rising Above and is a multi-dimensional outreach to special needs families. www.risingaboveministries.org
What is something that most people don’t know about you, but you want them to know?
In the aftermath of my grief and loss, I am re-discovering some things about myself that I had forgotten. I am realizing that at my core, I love adventure! I spent a semester abroad when I was in college and rode the Eurorail all over Europe from our home base in Florence, Italy. It was a freedom and joy I embraced wholeheartedly. I am now looking forward to new adventures and learning new things about myself. You should also know that I can do a mean whistling solo – it’s a special gift you’ve got to hear to appreciate!
How has God helped you “Reframe” your perspective along the way?
One of my favorite topics right now is talking with women about how to redefine their lives. The ability to “reframe” my perspective has been one of the most critical skills I have developed through the twists and turns of my life. I believe it is essential for all of us to learn how to do this in order to survive the challenges we face. The first time I had to employ this skill was after learning that our son would have life-long disabilities. As I began to realize he would never speak, walk independently, or live a typical life, I was crushed. My husband and I both struggled to accept this reality, but eventually we began to see what an incredible blessing our son is. What initially seemed like a heartbreaking disappointment became my reason for being, but I had to decide to let go of the disappointment and embrace God’s purpose for my life.
What is your superpower?
My superpower is Vulnerability! For years our culture has seen vulnerability as weakness, but science is showing us that it is essential for a fulfilling life. As research professor Brene’ Brown says, “Vulnerability is the birthplace of everything we are hungry for.” Over time, I have become a person who is not afraid to ask for help. I know I don’t have all the answers and I have learned to surround myself with people who are experts in their field. This has been indispensable as I am learning how to navigate life without my husband. I am also willing to share my story and allow the hardships I have faced and the lessons I have learned to encourage others.
What good has come out of your trial?
We started Rising Above because of our son, Jon Alex. He has never spoken a word in his life and yet he has inspired thousands of people and is a force in the special needs community.
I founded Redefine This Life after the death of my husband. Through the challenges I have faced in life, and now as a widow and solo parent, I have discovered many tools that have truly helped me as I learn to redefine my own life. I am excited to have this new platform for talking to women who find themselves facing a life they never dreamed of.
What I am learning is that every trial and every challenge is an opportunity to decide what story you are going to tell yourself. Is God for you or against you? You have the freedom to decide, and what you decide will determine the course of your life.
How has your faith changed along the way?
I grew up attending church and faith has always been a part of my story. After our son was born, going to church was a challenge because of his disabilities. So many churches do not make an effort to accommodate people with special needs. It was a long struggle, but eventually we found our place. In fact, we were able to influence our church to grow their outreach to the special needs community.
After the death of my husband, my faith was shaken. I had and still have many questions for God about why things had to happen the way they did. I know in my heart that God loves us, but the hard questions remain. My head and my heart don’t always line up. I believe there is purpose in the pain, and I am thankful that Jesus has sustained me over these past two years. I trust He will continue to do so. My husband had a beautiful quote I always try to remember. He said, “When we cannot trust God’s actions in our life, we must trust His heart.” How true this is.
How has God used your story?
It has been such an honor to see how God has used our hardships and challenges to touch other families who have children with special needs. One of the things that has meant the most to me is hearing the responses we have gotten from Jeff’s last book, Common Man, Extraordinary Call. Jeff began the book before his death, and it was very important to him to speak truth and share his hard-won wisdom with other special needs fathers. Hearing the feedback from dads about how the book has helped them has been so rewarding.
God continues to use our lives in unexpected ways. Jeff’s messages are online and accessible to parents, as are our Rising Above podcasts and videos. God has used the things that broke our hearts to bring glory to Himself. He has opened doors for me to share our story in ways I never could have imagined. I have been given the opportunity to speak to people across the country and share my heart. What an honor and privilege to be used in this way.
What is a highlight of your story?
After Jeff’s tragic passing, I was asked to help shepherd his book project to completion. I had feared that Jeff’s dream of a “field guide” for special needs dads had died with him, but instead God made a way for the book to be completed. It was released in January of 2019 to a host of grateful readers and so many who loved Jeff.
It has brought me great joy to know that his legacy lives on and that his message of hope and encouragement to special needs parents will remain long after his life on earth ended.
It is hard to imagine that so much good can come out of so much hardship and suffering, but that is the way God works. He transforms the low places into the highlights.