by Kristina Mulligan
There was quite some time – years, actually – where I didn’t think that I would ever be a mother. Battling infertility hurt and pushed me in ways that I had never thought possible. After all of the tears, sleepless nights, medications, procedures, and negative home pregnancy tests, however, we were one of the lucky ones who finally got our family. It was part science, part love, and part miracle.
When our baby was born three months early – in Winter instead of Spring, February instead of May – I was faced with an even bigger battle. Our NICU days were some of our highest-highs – three cheers for wet diapers and grams gained – and our lowest-lows – coding machines and delayed homecoming, experiences that still haunt me today. I didn’t know what our future would look like, or even the certainty of a future at times. Our days were long, the nights were longer, and, I didn’t know it, but I was being shaped into the mother I needed to become – one round at a time. After seven weeks, Flynn was finally able to come home.
Our first months together were packed full of many doctors’ visits, as most preemie journeys begin. Constantly being surrounded by medical professionals, there were some red flags early on surrounding delayed and missed milestones, among other traits. We were referred to early intervention specialists before Flynn’s first birthday, as well as undergoing some evaluations and testing, but it wasn’t until he was almost three years old that he was officially diagnosed with cerebral palsy.
Cerebral palsy (CP) is a group of disorders that affect a person’s ability to move and maintain balance and posture. Cerebral means having to do with the brain. Palsy means weakness or problems with using the muscles. CP is caused by abnormal brain development or damage to the developing brain that affects a person’s ability to control his or her muscles. (Centers for Disease Control and Prevention)
The most difficult part of raising a child with a disability is not having a child with a disability. We have our challenges and difficult days, just as any other family, but loving through the hard parts is simple, my love is unconditional and has endured so much more than this. It’s societal perceptions and opinions that are difficult to overcome and often seem insurmountable. Flynn was born into a world full of stigmas, of “can’t,” “won’t,” and “never” that need to be shattered before he is considered equal. The word “disability” alone is even considered taboo. Communities are often not accessible or inclusive. There is so much for the disabled population to overcome that isn’t even related to their diagnosis.
There’s this known untruth spread around society that individuals with disabilities are incapable, unworthy, and are lesser than. Following Flynn’s CP diagnosis, this is what weighed on my heart: To those who knew him before, would he be the same now? To those who were to meet him in the future, would he be given an equal chance?
And throughout our first months after receiving this diagnosis, I learned something and it rings true in so many ways: Just because the world is loud, doesn’t make it right. You can tell me all day long about the “facts” that you’ve learned about cerebral palsy, but I guarantee I can show you a different truth. I’ll meet your “incapable, unworthy, and lesser than,” with “able, worthy, and equal.” Just because someone is yelling, doesn’t make what they’re screaming true.
March is National Cerebral Palsy Awareness Month in the United States. March 25th is National Cerebral Palsy Awareness Day. Advocacy is what turns “what is” into “what should be.” This is why I speak up for CP awareness, equality, and funding. Spreading the real stories and sharing the real people that make up “cerebral palsy,” that’s what will change perspectives. And I won’t stop until the world shows this community appreciation, until there is representation in the media, until society becomes more inclusive, until there is federal funding, until we feel that the world has become a better (more accessible) place. I do it all because my child, and others like him, deserve a world where they are considered equal.
Preemie mom Kristina Mulligan is a wife to DJ and mom to Flynn. Their family lives in Hudson Valley, NY.
Kristina loves crafting, listening to podcasts, and obsessing over true crime. Kristina is a Preemie Parent Mentor for Graham’s Foundation. Since becoming a mom, Kristina has used her superpowers for good, not evil, and have worked a lot with advocacy and raising awareness for disabilities, prematurity, and inclusion. You can follow Kristina and Flynn’s journey in her blog: One In a Mulligan