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Kristina, Flynn and CP

By Kristina Mulligan

For so long, we were the two who desperately wanted to be three.

We finally found out that we were going to be parents as we approached four years of negative tests, countless injections, and a multitude of treatments. Our sweet “Baby M” was due in May 2017, and I quickly began nesting for my poppy-seed sized child, much to the dismay of the superstitious. I waited for far too long to not celebrate every single moment and quickly ignored the naysayers. I was so full of joy as all my dreams suddenly were coming true.

Until they unexpectedly weren’t…

During my twenty-seventh week of pregnancy, I found myself in labor and delivery at our local hospital. As I was laying in my hospital bed listening to doctors tell me things about “organ failure,” “survival rates,” and “preterm delivery,” I felt all the happiness leave my body and every ounce of it was replaced with pure terror. I had never heard of preeclampsia before, but I suddenly was living it. And, before I knew it, our son was delivered via emergency c-section when I was just twenty-eight weeks pregnant. Flynn weighed just over two pounds and was about fourteen inches long. When I got to meet him for the first time when he was two days old, I was equally in love and terrified – both of being a mother and of his tiny size.

I was thrusted into preemie parenthood, into the NICU, talking in medical abbreviations, and learning about equipment with names that I could barely pronounce without even getting a moment to breathe. I was living in constant fear and in a space where I was a mother but didn’t feel like I was, or even deserved to be, one. I lived in constant guilt over what “I’d done.” It wasn’t the motherhood I had always dreamed of; it was so far from it. Our family was isolated, and we found ourselves without even our closest friends navigating this new world alone. I simply drifted from the hospital and back and then eventually from appointment to appointment, to therapies, and back home again. With time, I became a bit more comfortable in my role as “preemie mom.”

Until my title changed…

When Flynn was almost three years old, he received a diagnosis of cerebral palsy and periventricular leukomalacia.

Quick side note: Cerebral palsy (CP) is a motor disabililty that affects a person’s movement, balance, and posture. Periventricular leukomalacia (PVL) is an injury to the white matter around the ventricles of the brain.

It had been a long road before that day, so the diagnosis wasn’t unexpected, but finally hearing the words really threw me into a spiral. It was weeks before I found my strength again, but I eventually was able to come back from my collapse fiercer than ever. I had realized that regardless of any diagnosis or label, nothing about Flynn had changed. A mother’s love is unwavering and unconditional, and so I grew into who I needed to become – a mother, an advocate, an interventionalist, an educator, and all things beyond and in between. It was when I found my new self that I discovered my joy again, the same joy that I lost all those years ago.

Our days aren’t easy and as time passes, struggles and strengths are ever evolving. I’m not always moving seamlessly in stride, but it was through this journey that I have unexpectedly rediscovered myself. Beyond all the hard, I found my joy.

1 Comment

As a now adult who has CP and am also an advocate for kids with CP because I know the struggle , I was so thankful for what my parents did, from find a hospital that was founded for kids with CP to making sure every surgery I had would help me for my future path and teaching me that even though I have a disability it should not hold me back. I loved hearing about your story it makes my day to be able to hear other peoples stories that have the same disability like me, makes me feel like I am not alone!

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