About

Malayna is our firstborn and just turned 21 in October 2023. She was diagnosed with Tuberous Sclerosis at one month old and began to have seizures at four months. She has many medical symptoms of TSC that affect almost all areas of her body and are monitored regularly, but through it all, she remains a happy-go-lucky sweetheart of a girl. We are very lucky to call Malayna ours and believe me when I tell you that even through the hard stuff, I have never doubted that she was meant to be in our family.

As far as where she is developmentally, well that is a hard thing for me to answer so I will start with the basics. Malayna is still in diapers and on paper most people would put her at the level of a young toddler. She is able to verbally communicate her needs but beyond that most of her speech is repetitive phrases and echolalia and she is unable to communicate pain or emotions. She is dependent on a caregiver/us for bathing, dressing, preparing meals, giving medicine—basically all her daily living skills. All of that aside, she is the queen of one-liners with the gift of great comedic timing. She is stubborn, she can schmooze with the best of them, and has a knack for melting the hearts of even the toughest of folks. 

Having a child with special needs is a learning curve, but there are a lot of people and procedures that help you navigate through it. There are children’s hospitals, pediatric doctors, birth-to-three programs, respite programs, daycares, and the school district that helps to get your child to adulthood. In my experience, when your special needs child becomes an adult, you face a world that no longer has a network set up. Hospitals and doctors are now equipped to deal with adults, but not ones that still need their parents to hold their hands and change their diapers. All of the caregivers and family members that we once relied on for help have gotten older and are not as readily available or physically able to watch our “kids” as they used to. Most of our original respite workers have now graduated high school and college and are starting families of their own and it gets harder and harder to find a place for our “kids.”

When Malayna turned 16, I toured two adult day centers and I walked away knowing there was no way I would send her there. For the most part, I observed facilities that were well beyond worn with not a lot of meaningful activities happening for their clients. When I picture Malayna’s adulthood, I picture her thriving and continuing to show growth and learn new things—albeit at her own pace. I want her to be excited to get out of the house and go somewhere where she is loved and challenged and celebrated for her uniqueness. I also want to be able to go to work and know that she is safe and comfortable and cared for to my standards (and those are pretty high standards, and I don’t feel bad for having them). The relief I feel knowing that all of those things I pictured for Malayna are now a reality is far beyond what I can put into words. Chanel and my dad (Charlie) are two of the most loving, selfless, and driven people I have ever met. I could not tell you the amount of research, facility tours, brainstorming, and hours of work that were put into Onward before the current building was ever purchased. This facility is so needed, and to see it coming together at the right time, in the right place, and for the right reasons gives me so much hope for the future of my “kids” and everyone else who deserves a chance to continue learning and growing into and throughout their adulthood.