Like most couples, when we dreamed of having a child we dreamed about our child laughing, playing, growing up strong and smart, going off to college, having tons of friends, being part of a community, falling in love, and one day maybe starting her/his own family. When we decided to have our first child, we were young, healthy, working parents who assumed we’d find great childcare and be able to continue our lives (although maybe a bit more tired than before) as we always have.
Our first child, Ryler, was born in June 2011. He was full-term, but to our surprise, only about 4lbs and had a significant cleft lip and palate which prevented him from sucking. We spent several weeks in the hospital with him undergoing numerous tests from specialists to determine what other medical challenges he had, and learning how to feed him. We eventually discovered he has a genetic disorder none of the doctors had heard of, swallowing issues which required a feeding tube for a couple years, has a few heart defects, a bleeding disorder that required transfusions and causes excessive bruising and bleeding, is immune deficient, hearing impaired, has microcephaly (small head with abnormal brain development), seizures, significant intellectual disabilities, and he would require extensive early intervention and continuous therapies to learn what most of us take for granted – how to eat, walk, talk, hold things with his hands, etc. Today, he is followed by almost 15 medical specialists to manage his care.
After learning all this about our son, the dreams we had for him before he was born didn’t dissipate, but our focus shifted to understanding his medical issues and how to navigate our new world together. Our dreams may have changed a bit, but during those early days, and still today, the most important thing we want for our son is that he be given a CHANCE. We believe that everyone deserves one. We want Ryler to have a chance to develop to his fullest, to love and care for others and be loved and cared for by many, to go to school and learn, to have friends, play and laugh, and just be a kid.
We were fortunate Ryler was born 15 months after the ACA (Affordable Care Act a.k.a “Obamacare”) became law. Because of the ACA, we don’t have to worry about lifetime maximums within our private insurance or pre-existing condition insurance discrimination, so Ryler can have access to the many wonderful specialists who work with and believe in him. Thanks to our Medicaid waiver which helps our family cover things, like therapy, that private insurance doesn’t, Ryler has been given the chance AT LIFE we dreamed of.
It is frustrating to us that many don’t realize how crucial affordable, quality medical insurance and programs like Medicaid are. Many people don’t appear to understand what they cover, how they protect the most vulnerable Americans, how close they themselves may be to needing ACA protections one day (if they don’t already), or how devastating it can be to go without. Raising a medically complex child can be financially devastating, no matter your income level. Many families like ours need one parent to work in the home to care for their sick child (Ryler’s amazing Daddy in our case) and are down to one income; making health care costs even more of a challenge. Our private insurance and Medicaid pay for extremely expensive antibodies that protect Ryler from illness, his seizure medications, home nursing, and therapies. Medicaid even gives children like Ryler the ability to go to school with medical care in place, rather than being forced to teach him at home where he’d have little social interaction.
Today, Ryler is an extremely happy, strong, playful, spunky, loving seven-year-old. He adores his family including his little brother, Reece and medical alert dog, Oaty. He loves going to school and gives the best kisses. Ryler has proven many doctors wrong over the years and we’ve learned so much from him, simply because he was given the chance to be a little boy – to learn in an environment appropriate for him, and to receive crucial, life-saving medical care. As a family, we’ve been with him during countless medical procedures, surgeries, hospital stays, ICU visits, ambulance rides. We have even seen him near death after complications from procedures. But one thing that has saved our sanity and allowed us to focus on caring for our sweet little boy is knowing he will always have the health care coverage he needs. If we don’t vote to protect our care in November, GOP leadership has said they will once again try to strip families like mine of that lifeline. Please be a health care voter and help kids like Ryler have the chance they deserve.
