Monica shares her personal perspective regarding wellbeing and navigating her “parenting journey” alongside Marfan syndrome.
My child was diagnosed with Marfan’s in December of 2017. Along with the diagnosis came incredibly debilitating fatigue and migraines from POTS. In March 2024, they underwent spinal fusion – a 10 hour surgery that fused their entire thoracic and upper lumbar spine.
It takes an incredible amount of bravery to carve your own road. It is a journey that is a lonely and challenging task, as there is no map or compass to guide you through this rocky and chaotic terrain.
Sometimes, it feels like you are driving a car with foggy windows… is there even a road at all? Many, many times I have felt abandoned and forsaken, left to teach my child how to live in a world that doesn’t directly offer support for someone with their disabilities. For example, waiting in line for anything is particularly grueling for them. Or, let’s say you are 6’2” and your spine is fused, you can imagine using the average bathroom sink to wash your hands is a ridiculous and challenging feat. These are the types of daily
challenges (and truly lifelong challenges) we never considered. In this new world, post diagnosis and surgery, here we find ourselves. My child and I wandering about, navigating the world and rewriting the rules as we go.
Along with these feelings of being lost there is also the ever-present emotional world that rides shotgun on this grit-filled path. It’s an emotional jamboree, all the feels, all the depth of emotion, playing inside my heart and mind. There are psychological scars that I bear from this life- changing diagnosis that may never heal. I wasn’t prepared for the overwhelming sadness and disappointment I feel at times. I’ve had to transform my expectations of what I thought my parenting journey would be, and those feelings are often swirled together with the savory desire of my old beliefs.
The cherry on top of this mountain of emotions is rage. White, hot, burning rage. I used to believe that there was some external magic that I had yet to discover, and that this magic would save me from my world of ugly and messy emotions. I do consider myself a person of balanced temperament, so when the rage pops up and waves at me, it used to take me by surprise. Now I chuckle a little when it shows up, as time has passed I can see it coming. I have made room for rage and other shame triggering feelings, and I have surrendered and accepted these feelings. I am understanding that I must treat myself with the love and support that I want to receive from the world. Also, it is absolutely appropriate to be raging because my beautiful child is chronically ill.
These days I feel it most when I speak with my friends about their children—their physically “normal”, healthy
children. In my mind, I cut these dear friends a mega ton of slack, for they are only living and expressing to me the lives that they know. There is humanity in allowing myself the room to feel sad and angry because my experience is different. Through this emotional grace, I appreciate and understand my friends; they aren’t wrong for how their lives are, their lives are very different than mine. I make no apologies and feel no shame for any of my feelings, as I think they are all quite normal for what has unfolded for my child and me in this life. The emotional pain of living is something I am now able to accept. More and more, it is folded into my everyday life.
As I have given myself permission to embrace and accept all my feelings, I make my way down this perilous path. Allowing and acknowledging the range and depth of my feeling has also unearthed some gifts. Behold! There are gems to be found in the darkness! I can say with a clear truth that my child and I are so much
closer than I would have ever expected. I feel deeply grateful to have this connection with my child. There is healthy autonomy, yet we also have good communication and trust. We show a lot of respect to each other. Honesty and generosity are present in our relationship. This tragedy has allowed us to have a deeper connection.
It is my honor to know, and be the parent of such a great person.
The Marfan Foundation is a nonprofit organization that saves lives and improves the quality of life of individuals with genetic aortic and vascular conditions including Marfan, Loeys-Dietz, and Vascular Ehlers-Danlos syndromes. Our vision is a world in which everyone with genetic aortic and vascular conditions can live their best life.