Raising Resilience: A Mother’s Journey
Raising Resilience: A Mother’s Journey
Written by Laura Sousa Wagner
Posted: April 11, 2025. This article was originally shared in our Spring 2025 Newsletter.
I wasn’t supposed to live more than a few days. When I was born with Spina Bifida, a birth defect that impacts only 1 in 2,900 babies, it was a shock. My parents were told that if I did survive, that I would never walk, and that I would very likely have brain damage.
Spina Bifida, the most common permanently disabling birth defect of the central nervous system, caused my spinal cord to be in a sac outside my body when I was born. In my first days of life, I underwent three surgeries to reconstruct my spinal cord, and to close the opening in my spine. Unsurprisingly, the nerve damage from this ordeal was significant, resulting in sensation loss and significant weakness in my legs and feet.
Luckily for me, my parents took my doctors’ prognoses with a grain of salt. After I was finally discharged from the hospital, they took me home to the (inaccessible) house that we lived in, where I learned to navigate the stairs and everything else that came with a world that was not built for someone with a disability. I immediately started physical therapy, got fitted with a set of braces to stabilize my legs, and was provided a set of blue crutches. By the time I started preschool in a building with no elevator, I was walking.
Fast forward thirty years, and my son, Liam was born, neither one of us with any obvious complications. The afternoon we were to leave, a routine circumcision turned into a medical crisis with persistent bleeding and complications, leading to an ambulance medflight to Massachusetts General Hospital after tests revealed that Liam, in fact, had severe hemophilia A.
In the days after Liams’ diagnosis, it didn’t matter that I myself had been living every day with a severe chronic condition and could do basically anything I wanted to do – I hadn’t made that connection yet. I felt so sorry for him; I felt so much grief for the future I had pictured for us that was suddenly now so different, and I was so afraid for what was to come. I entered what can only be described as a mourning period for the loss of that future we had imagined. The questions were endless. How will this diagnosis affect him? How complicated will treatment be? Will it prevent him from doing things he wants to? I was grieving the losses of the things that had yet to happen.
Being diagnosed with a chronic condition almost always tends to be seen as such a bad thing that immediately comes with a list of negatives that now apply to your life. But why? Why are some diagnoses seen as more pitiful than others? I doubt many people who wear glasses have had a stranger approach them and tell them how sorry they feel for them that they need to wear something on their face so they can see properly, yet I’ve lost count of how many times I have been told that I am an inspiration simply for going about my daily life, and that I have a great attitude for not being able to do so many things, and that my disability is such a “shame.” But there is nothing inherently worse about not being able to walk without braces than there is about not being able to see without glasses, or about having to factor up before heading out to do our favorite activity. Living with a disability – or any chronic diagnosis – is not a bad thing. It is just another way of being that just may require some accommodations in order for you to be successful. And oftentimes, the ableism that accompanies a diagnosis – that feeling that it makes you “less than” – is the most disabling thing about a diagnosis.
It has admittedly taken me years to get to a point where I can so clearly articulate the ways in which ableism has affected my life – I have lost jobs, been disregarded in medical settings, and underestimated at nearly every new stage in life simply because I live with a visible disability. It was not until I became a parent to a child with a chronic condition that I realized that if I was going to teach my son how to accept his diagnosis and to use the resources available to him to live his best life, I had to first model that myself.
While the difficulties of living with a chronic condition are often easier to focus on, there are also many benefits. Strength. Ingenuity. Resiliency. The kids I have met in our bleeding disorders community are more empathetic because, while they might not know what I “have,” they know
what it is like to live with something that make them special. I learned from a young age how to use my voice and to advocate for myself because I had to. Liam’s diagnosis has led us to be a part of the most amazing community of other families living with bleeding disorders, one that has supported us, cared for us, understood us, and been a lifeline when we have needed it. And all those hours when I was a child that my friends spent running around, playing sports, or climbing trees? I was sitting in my room practicing violin, which I began playing at the age of five. What started as an activity I “could do” quickly became a passion that I could not live without – one that went on to provide me a scholarship to college, two international tours, and opportunities to play professionally for the rest of my life.
So many times, people have looked at what I have accomplished and commended me for being so successful “despite” my disability. But I believe I have accomplished what I have because of it. Remember back to when my parents were told when I was born that I would never walk? Well the thing is, I was never told that I would never walk. And because I didn’t know what my limitations were supposed to be, those limitations did not apply to me. Without the knowledge of what confines I was supposed to fit into, I created my own path, set my own goals, and walked myself to law school every day for three years until I got my degree. Had I grown up believing that the proverbial bar was only so high for me because of my disability, my life would have been a self- fulfilling prophecy worthy of the pity strangers often bestow upon me.
The goal in living with a diagnosis should never be to “overcome” that diagnosis. The diagnosis will always be a part of you. Success can mean so many things, even for people with the same diagnosis. I never would have thought before Liam was born that he would know how to start an IV at 4 years old, or that all of Liam’s first friends would have bleeding disorders, or that bleeding disorders camp would be like “our version of Disneyland” and the thing we would grow to look forward to all year. For years, I would get defensive whenever I would use my wheelchair and get comments about whether it is “easier” for me to get around while in it. But now I gladly admit how much better my life is now that I have stopped trying to make myself fit into the expectations of a world that doesn’t always understand what it is like to have a diagnosis. My acceptance of myself and my disability, contrary to what I thought when I was younger, has only made my life better. It has allowed me to be stronger, happier, and more confident, and most importantly, better able to show my child how to accept himself for who he truly is so he can live his best life.
Laura, her husband, Ryan, and their three kids, Autumn, Jacob and Liam, live in Massachusetts. Liam has hemophilia.