As adults — and especially as parents — it’s easy to think that kids need to learn from us. That we’re here to teach them everything they need to know about the world. And, while yes, we do need to teach our littles a lot (um, no touching the stove or jumping headfirst off the couch, thankyouverymuch), it’s truly amazing how much children can teach us — about life, about purpose, about determination and about ourselves.
And there’s no better example of that than 8-year-old Mason and his mom Heather.
Mason has a rare genetic disorder — Familial dysautonomia — which is a genetic disorder that affects the development and survival of certain nerve cells. The disorder disturbs cells in the autonomic nervous system, which controls involuntary actions such as digestion, breathing, production of tears, and the regulation of blood pressure and body temperature. It also affects the sensory nervous system, which controls activities related to the senses, such as taste and the perception of pain, heat and cold.
Despite years and years of doctor appointments, treatments and surgeries, his mom Heather says that Mason always has a smile on his face and faces life head on — something that she says has inspired her and her family to know the true meaning of strength, perseverance, unconditional love — and to live life to the fullest.
But Mason doesn’t just inspire his families — he’s inspiring the world! Mason is a “Cycling Kid Coach” for Miracle Challenge 2016, a 27-day wellness challenge that encourages you to reach your fitness goals, while fundraising for kids in your Children’s Miracle Network Hospital (CMN). Definitely check it out here.
To learn more about Mason, Heather and the Miracle Challenge, read on for our uber inspiring Q&A!
Q&A With Heather and Mason
How did Mason become a Kid Coach for Cycling? It was a situation that seemed as if it were meant to be. Mason has worked for several years with his therapists to achieve his goal of riding a bicycle without training wheels. Recently, Mason surprised us all and rode his bike unassisted for the first time during a therapy session. Our local CMN director happened to be there and witnessed him riding his bike. A few days later our local CMN Program Director received an email from the CMN national office asking if they knew of a child who would be a good ambassador candidate for cycling. He immediately responded and told them about Mason’s story. Mason was then chosen to be a Miracle Challenge Ambassador.
What are his responsibilities and how is he liking the coach role? Mason’s role as a CMN Ambassador is to help raise awareness of CMN Hospitals and their programs they help to fund. Additionally, during Miracle Challenge Month (in April and September) Mason will be helping to raise funds through Miracle Challenge and Fitness Challenge to be donated to CMN Hospitals and their programs.
Mason is loving the role of ambassador thus far. He has had the opportunity to meet so many people and experience many fun events. He is excited about the upcoming Miracle Challenge Month in April.
What are some of Mason’s favorite activities? Mason enjoys riding his bike, gardening, making crafts, playing with cars and spending time with his sisters, Jenna and Olivia.
Mason’s story — and your family’s story is intense. And filled with love. Any advice for moms going through similar health issues with their children? I would encourage all mothers to build a support system of family, friends, doctors, therapists and other parents of children facing similar issues. They say it takes a village to raise a child, but this especially rings true with raising a child with special needs. Learn to lean on and accept help that your support system offers. Your support system will be there to help you during the hard times and rejoice with you during the good times.
Know that it is okay (and normal) for you to show emotion whether it is bad or good. We, as mothers, think of ourselves as superwoman, but we are not. We carry the heavy load of dealing with our children’s medical issues on a daily basis and sometimes that load becomes too heavy. When you are experiencing a less than stellar day, know that it is okay to cry about it. It is not healthy for you or your family to keep those emotions bottled up inside.
Live for today and not the worry of tomorrow. Raising a child with special needs comes with constant changes. There will be good days and bad days. Do not worry about tomorrow’s upcoming doctor appointment, therapy session or what kind of day your child might have. Focus only on conquering today!
How do you make sure to take time for you and your health? As mothers, we tend to put our needs on the backburner, but it is important to remember that if you are not at your 100 percent then you are not able to give your 100 percent. Remaining healthy is much more than just an annual doctor visit, but it encompasses the entire body … physically, emotionally, spiritually and socially. Take the time to care for yourself in every aspect. I am thankful for a loving and supportive husband who allows me the time to care for myself.
Anything you’d like to add? Thank you for allowing us to share Mason’s story with you and your followers. I hope that our story helps to encourage families that are facing similar issues as ours.
I don’t know about you, but I’m going to go sign up for the Miracle Challenge RIGHT NOW. A huge thanks to Heather and Mason for their time — so inspiring! —Jenn