My husband and I each have a background in education. I taught middle school and high school for years, and he is a college administrator with a doctorate in education. A perpetual student, I am always looking for new ways to do things and new knowledge to explore. When our three-year-old son, Richie, was born with a genetic condition that affects his muscles and results in a host of orthopedic, respiratory, mobility and communication difficulties, I felt at first as if I was buckling under the weight of a huge responsibility. There was so much to learn, and so much I didn’t know, about providing care for a child with a feeding tube, a tracheostomy, and muscle weakness that affected everything he did.
Congenital fiber-type disproportion myopathy was a diagnosis we weren’t expecting, and as first-time parents, we had to learn simultaneously how to be parents and how to parent a child with significant needs. Pressure is defined as the amount of force pressing up, down or in on a certain area, and raising a child with medical complexities and disabilities involves lots of pressure. Any chemist will tell you that pressure changes things.
The level of daily stress associated with managing relationships with family and friends, schedules, work and life in general is tough for most moms. The desire to do it all perfectly is a common cause of pressure. This stress is compounded when your child has medical complexities, because perfection is not optional; any moment of imperfection could have dire consequences for a medically fragile child.
In addition to simply keeping our medically complex child healthy, we feel pressured to prepare him not just adequately, but exceptionally, for a world that was not created with his needs in mind. Knowing that at some point in his life, he will need to navigate the world independently, we work hard to instill a sense of self-reliance, even though he is only three years old.
Modeling advocacy and activism on his behalf, my husband and I each take on causes that are relevant to Richie’s future. We are focused on enhancing awareness of disability issues, promoting acceptance of differences, and demonstrating that all of us have potential. Most importantly, we want him to accept his condition and not live with a chip on his shoulder. The outcome is important, and there is pressure to take the right steps toward these goals.
I have had many days when it feels like I’m crumpling under that pressure, especially early on. Over time, I have realized that by becoming well organized and working with a sense of purpose, I can take small steps and relieve some of the immense pressure that can be a hallmark of this life. I don’t always get it right, but I try to always work toward the big goals.
As a former teacher, I like to create space for learning and discovery in my own life and especially in Richie’s life. In this series of posts that I call Teachable Moments, I will explore what we are learning as a family, what we can teach the world around us, and even how we focus on education as a route to success for Richie. I invite you to look into our world and correspond with me so we can learn from each other.
We can choose to be pressed down to dust, or we can use the pressure to create change. Pressure destroys things, but pressure also makes diamonds.
Raising Richie continues to bring joys that I never expected, and every day presents a new opportunity to see the gems being formed right before my eyes.
Nikki (Charisse) Montgomery has served on the ProMedica Toledo Children’s Hospital Family Advisory Council since 2013. In addition to being a professional writer and editor, she is pursuing a graduate certificate in patient advocacy. She is a hospital volunteer and a parent mentor, and she volunteers with Muscular Dystrophy Association. Nikki and Richie are subjects in ProMedica Toledo Children’s Hospital’s Beyond the Frame photo exhibit, on permanent display inside the hospital’s main entrance hallway. Nikki is a regular ProMedica HealthConnect blogger who hopes to inspire and connect with others through the Teachable Moments series. You can follow her on social media @madvocator.