Well, let's see.... where should we start?
We were married in 1994 on a FA-REEZING cold, December day. Three years after we were married, we welcomed our first little munchkin, Alexis Faith, to our home. Three must be our magic number, because every three years after that, a new little one would arrive in our home; Jackson Ryan (rare chromosome duplication < than 200 in the world), Collin Ryan, and Isabella Emma.
I stay busy being the CEO of our home, advocating for Jackson, reading, and staying in touch with friends. In addition to being a mom, I’m the director for the non-profit organization, Duplication Cares, which supports families facing Jackson’s diagnosis. With such a rare diagnosis, you can imagine that our group knows more about the duplication than our doctors. Much of our time and energy is spent helping our children to achieve their goals, and helping Jackson to progress in his life. In addition to my work with Duplication Cares, I’m also the Chairperson for the Utah Parent Center Board of Directors. The Utah Parent Center helps families who have children with disabilities ranging from learning disabilities to being medically fragile. We are master connectors, who work to teach and inform parents about resources in not only the medical field but in the community at large. We also offer support and training on a variety of topics such as behavior, ADHD / Anxiety, executive function, etc. Much of our time is spent helping parents navigate the educational system (IEP’s) that support a child with a disability.
So, that’s a peek into our lives. While for the most part, we’re just your typical family, we also know our family is unique in that every aspect of our life involves planning and considering the needs of Jackson. When mood regulation and anxiety play a role in each moment of the day, other things like typical family outings, a spontaneous change of plans, and even spending time at home together can be a little like Russian Roulette. Sometimes good, sometimes…. really bad.
Forest Gump knew what he was talking about when he said