Kristina Mulligan

@kay_bee_emm | contributor
Kristina | Wife, Mama, Writer, Advocate.
Ali Flynn

Teaching Teens Why Social Distancing Matters During the Pandemic

Friends, Does anyone else out there feel like they are on the COVID  “no” train with their kids? “No, you can’t have a sleepover.” “No, your friends can’t hang out in your bedroom right now, but you can hang out in our heated garage.” “No, your friends can’t come inside the house and no, you can’t go inside your friend’s house.” I’m exhausted talking to my teenagers about this and I’m weary that this has gone on for so long. To be quite honest, I’m over this… but I know deep inside, I have to remain positive and stay grounded to keep our family safe. What I thought was going to be a few days off from school has now crossed the year mark. But today I was also reminded, from a stranger, how I have to remain diligent as a mom. A delivery person called to confirm a flower delivery and began to pour out his heart, sharing with me how he lost his dad to COVID. His dad was a healthy 72-year-old man who, within days, was placed on a ventilator and never came out of the hospital. This young man was weepy sharing his story. He willingly opened up his deepest wounds about how he was able to hold his dad’s hand and how he is one of the lucky ones since his dad didn’t die alone. This man’s personal encounter with COVID needed to be heard through my Bluetooth, in the car, for my teens to hear. His message was needed as my girls too often forget why we are sacrificing being indoors and sleepovers with friends right now. One day though, it won’t be this hard… And on the days I begin to feel filled with frustration, I simply need to go back to this phone call. My “no” is to keep our neighbors safe. My “no” is to protect the health of my family members. My “no” is often not the path other people are taking, and at times it’s not fun, but the big picture is more important to me.  I just hope one day my teenagers see this as well. So for now, I have to remain confident and comfortable being the “no” mom. But I sure do miss our old ways… I miss the girls having friends over laughing in the kitchen and hearing all about college applications and life in high school while munching on endless bags of chips. I miss making waffles, the morning after a sleepover, and watching the girls walk downstairs in their oversized sweatshirts and messy buns. I miss the hustle and bustle of what my house once was, a place where kids were in and out all of the time, side doors slamming and laughing… Lots and lots of laughing. But I really miss saying yes… I am patiently waiting for the day I can start to say “yes” again and again and again. Yes to the sleepovers. Yes to the snuggles on the couch with a friend, watching a movie and sharing a bowl of popcorn. Yes to a handful of teenagers hanging out in the kitchen eating whatever leftovers I have in the fridge. Who knew one simple word could mean so much? I see the light and know the bend in the road is coming soon — the road we all miss and hold close to our hearts in memory, but also a road that will be the same, yet different, once we embark on it again. So for now, I will continue to look forward to the day I can say “yes.” A “yes” that is filled with every ounce of confidence, stored within this heart of mine, knowing my family and all those around me will remain safe.

Kristina Mulligan

Why We Need the White House to #GoGreen4CP

In the United States, March is recognized as National Cerebral Palsy Awareness Month, and the official observed day for CP awareness is March 25. This observance was created in 2006 by the Reaching for the Stars (RFTS) advocacy group. RFTS is run by parent volunteers who realized that, despite official awareness days for other disabilities, there was not a day that celebrated cerebral palsy. Green was chosen as the official awareness color, with the mindset that people would already have attire ready as the day followed St. Patrick’s Day. Even a few states, Georgia, Pennsylvania, and New Hampshire, hopped aboard and officially proclaimed March 25 as Cerebral Palsy Awareness Day in their jurisdiction. The problem is that, despite efforts of advocates within the community, the awareness usually starts and ends there – with those within the CP community knowing the details, but no recognition from the outside. Did you know that cerebral palsy is the most common physical disability of childhood? Or that 764,000 people in the United States are currently living with CP? Or that cerebral palsy is an umbrella term for disorders that affect movement, balance, and posture? I’ll be the first to admit: Before suspicions from Flynn’s medical team that we could be looking at a CP diagnosis, I hardly knew what cerebral palsy was. I had no idea that CP Awareness Day, or month for that matter, existed. It took me heading to Google to search for ways we could celebrate this new part of our lives, and shuffling through several pages of articles, that I stumbled upon a mention of lightings the year before (organized by Nicole Luongo in 2019). That’s when I borrowed the idea to do lightings in our hometown and convince those around us to wear green. I was met with questions and hesitation, as opposed to warmth and enthusiasm. Instead of the celebration I dreamed of, I turned it into an opportunity for education. After all, just a year before, I was in the dark, too. And that’s part of the problem. How can we ever expect to raise awareness if the only people that care are already in the community? I had to do something. This year, I am a part of an incredible team that created and has grown a petition to bring cerebral awareness in the biggest way: lighting up the White House in green on National Cerebral Palsy Awareness Day! Why the White House, you ask? Well, imagine if a landmark with the prestige and recognition that the White House holds were to light up green. You would wonder why. And if the President, along with his administration, were to announce that they were doing so in observance of National Cerebral Palsy Awareness Day? You would listen. And it wouldn’t just be America watching. It would be the entire world. There would be media coverage and a buzz across social media. Finally, after far too long, individuals with cerebral palsy — both adults and children — as well as their loved ones, would have something to look at that makes them say, “Wow. They really do see me. I do matter.” To date, we’ve received over 7,000 signatures – in just two weeks. All of that time, we were just individuals who wanted the same thing. Now, it’s so powerful to see in numbers how many are alongside us in this fight. Now we just need to roar loud enough. Where there is awareness, there is understanding. Where there is understanding, there is acceptance. Where there is acceptance, there is inclusion. Where there is inclusion, there is opportunity for a better world – for all. I ask that you sign . I ask that you share it with your friends. I ask that you reach out to your local media – news, radio, print, etc. – and ask them to announce that March 25th is National Cerebral Palsy Awareness Day. I ask that you click here to Tweet the President. Those before me have done a lot of fighting. I’m doing a lot of fighting.Our kids shouldn’t have to continue this fight. Representation matters. Awareness matters. It’s time that everyone knows to #GoGreen4CP. Set a reminder to rock your green on March 25, this year and every year to come. Let’s make the biggest green waves this world has ever seen. Sign the petition here.

Kristina Mulligan

Why We Need the White House to #GoGreen4CP

In the United States, March is recognized as National Cerebral Palsy Awareness Month, and the official observed day for CP awareness is March 25. This observance was created in 2006 by the Reaching for the Stars (RFTS) advocacy group. RFTS is run by parent volunteers who realized that, despite official awareness days for other disabilities, there was not a day that celebrated cerebral palsy. Green was chosen as the official awareness color, with the mindset that people would already have attire ready as the day followed St. Patrick’s Day. Even a few states, Georgia, Pennsylvania, and New Hampshire, hopped aboard and officially proclaimed March 25 as Cerebral Palsy Awareness Day in their jurisdiction. The problem is that, despite efforts of advocates within the community, the awareness usually starts and ends there – with those within the CP community knowing the details, but no recognition from the outside. Did you know that cerebral palsy is the most common physical disability of childhood? Or that 764,000 people in the United States are currently living with CP? Or that cerebral palsy is an umbrella term for disorders that affect movement, balance, and posture? I’ll be the first to admit: Before suspicions from Flynn’s medical team that we could be looking at a CP diagnosis, I hardly knew what cerebral palsy was. I had no idea that CP Awareness Day, or month for that matter, existed. It took me heading to Google to search for ways we could celebrate this new part of our lives, and shuffling through several pages of articles, that I stumbled upon a mention of lightings the year before (organized by Nicole Luongo in 2019). That’s when I borrowed the idea to do lightings in our hometown and convince those around us to wear green. I was met with questions and hesitation, as opposed to warmth and enthusiasm. Instead of the celebration I dreamed of, I turned it into an opportunity for education. After all, just a year before, I was in the dark, too. And that’s part of the problem. How can we ever expect to raise awareness if the only people that care are already in the community? I had to do something. This year, I am a part of an incredible team that created and has grown a petition to bring cerebral awareness in the biggest way: lighting up the White House in green on National Cerebral Palsy Awareness Day! Why the White House, you ask? Well, imagine if a landmark with the prestige and recognition that the White House holds were to light up green. You would wonder why. And if the President, along with his administration, were to announce that they were doing so in observance of National Cerebral Palsy Awareness Day? You would listen. And it wouldn’t just be America watching. It would be the entire world. There would be media coverage and a buzz across social media. Finally, after far too long, individuals with cerebral palsy — both adults and children — as well as their loved ones, would have something to look at that makes them say, “Wow. They really do see me. I do matter.” To date, we’ve received over 7,000 signatures – in just two weeks. All of that time, we were just individuals who wanted the same thing. Now, it’s so powerful to see in numbers how many are alongside us in this fight. Now we just need to roar loud enough. Where there is awareness, there is understanding. Where there is understanding, there is acceptance. Where there is acceptance, there is inclusion. Where there is inclusion, there is opportunity for a better world – for all. I ask that you sign . I ask that you share it with your friends. I ask that you reach out to your local media – news, radio, print, etc. – and ask them to announce that March 25th is National Cerebral Palsy Awareness Day. I ask that you click here to Tweet the President. Those before me have done a lot of fighting. I’m doing a lot of fighting.Our kids shouldn’t have to continue this fight. Representation matters. Awareness matters. It’s time that everyone knows to #GoGreen4CP. Set a reminder to rock your green on March 25, this year and every year to come. Let’s make the biggest green waves this world has ever seen. Sign the petition here.

Kristina Mulligan

Why We Need the White House to #GoGreen4CP

In the United States, March is recognized as National Cerebral Palsy Awareness Month, and the official observed day for CP awareness is March 25. This observance was created in 2006 by the Reaching for the Stars (RFTS) advocacy group. RFTS is run by parent volunteers who realized that, despite official awareness days for other disabilities, there was not a day that celebrated cerebral palsy. Green was chosen as the official awareness color, with the mindset that people would already have attire ready as the day followed St. Patrick’s Day. Even a few states, Georgia, Pennsylvania, and New Hampshire, hopped aboard and officially proclaimed March 25 as Cerebral Palsy Awareness Day in their jurisdiction. The problem is that, despite efforts of advocates within the community, the awareness usually starts and ends there – with those within the CP community knowing the details, but no recognition from the outside. Did you know that cerebral palsy is the most common physical disability of childhood? Or that 764,000 people in the United States are currently living with CP? Or that cerebral palsy is an umbrella term for disorders that affect movement, balance, and posture? I’ll be the first to admit: Before suspicions from Flynn’s medical team that we could be looking at a CP diagnosis, I hardly knew what cerebral palsy was. I had no idea that CP Awareness Day, or month for that matter, existed. It took me heading to Google to search for ways we could celebrate this new part of our lives, and shuffling through several pages of articles, that I stumbled upon a mention of lightings the year before (organized by Nicole Luongo in 2019). That’s when I borrowed the idea to do lightings in our hometown and convince those around us to wear green. I was met with questions and hesitation, as opposed to warmth and enthusiasm. Instead of the celebration I dreamed of, I turned it into an opportunity for education. After all, just a year before, I was in the dark, too. And that’s part of the problem. How can we ever expect to raise awareness if the only people that care are already in the community? I had to do something. This year, I am a part of an incredible team that created and has grown a petition to bring cerebral awareness in the biggest way: lighting up the White House in green on National Cerebral Palsy Awareness Day! Why the White House, you ask? Well, imagine if a landmark with the prestige and recognition that the White House holds were to light up green. You would wonder why. And if the President, along with his administration, were to announce that they were doing so in observance of National Cerebral Palsy Awareness Day? You would listen. And it wouldn’t just be America watching. It would be the entire world. There would be media coverage and a buzz across social media. Finally, after far too long, individuals with cerebral palsy — both adults and children — as well as their loved ones, would have something to look at that makes them say, “Wow. They really do see me. I do matter.” To date, we’ve received over 7,000 signatures – in just two weeks. All of that time, we were just individuals who wanted the same thing. Now, it’s so powerful to see in numbers how many are alongside us in this fight. Now we just need to roar loud enough. Where there is awareness, there is understanding. Where there is understanding, there is acceptance. Where there is acceptance, there is inclusion. Where there is inclusion, there is opportunity for a better world – for all. I ask that you sign . I ask that you share it with your friends. I ask that you reach out to your local media – news, radio, print, etc. – and ask them to announce that March 25th is National Cerebral Palsy Awareness Day. I ask that you click here to Tweet the President. Those before me have done a lot of fighting. I’m doing a lot of fighting.Our kids shouldn’t have to continue this fight. Representation matters. Awareness matters. It’s time that everyone knows to #GoGreen4CP. Set a reminder to rock your green on March 25, this year and every year to come. Let’s make the biggest green waves this world has ever seen. Sign the petition here.

Kristina Mulligan

The Loneliness of Parenting a Child With Cerebral Palsy

It’s interesting to think about the trajectory of life, and how different your circle looks from your graduation, your wedding day, through an infertility battle, the birth of a baby, during a NICU stay, and then when your child is diagnosed with a disability. Life full of celebration and happiness looks a whole lot different from when life gets real and you need support. Where there is struggle, there are people that don’t know how to interact with a person who is experiencing or has experienced trauma. Avoidance is human nature, and it just so happens that avoidance is most prevalent when the humans on the receiving end need love the most. I’m sure I’ve been one of those people at some point, hiding on the sidelines while someone in my life has needed the comfort I was too afraid to provide or didn’t even know was needed. It’s not until you go through trauma, until you almost lose everything and look around to see no one next to you that you truly can say, “Oh, this is what true loneliness is.” When our son was born at 28 weeks and was immediately whisked off to the NICU, our life changed in so many ways. As new parents, some of these were obvious – we knew there would be no more date nights on a whim, our late nights would turn into early mornings, and our house probably wouldn’t be the most popular spot for our friends to hang out anymore. All of these are things that parents-to-be prepare for. Babies change things… But, first, we were the parents without a baby. There weren’t any balloons, confetti, gifts or excited visitors. There was just us two and an empty nursery. I quickly learned the hesitation that surrounds something that isn’t a “sure thing.” No one wants to congratulate or celebrate, they don’t ask questions, they just silently wonder how long it will take for you to break. Plus, without a baby at home to take care of, it was assumed that there was no way to help; but with all of the time we spent going back and forth to the hospital, the housework piled up around us, our takeout bills were astronomical, and I reached peak exhaustion. With this burnout came an inability to be the friend to initiate conversations, to ask, “How are you?” and, by nature, the circle of people surrounding us dwindled. With our baby under the care of doctors and nurses around the clock, very few understood why things had changed for us, even with some mentions of our NICU stay being a vacation and my motherhood not being “real.” We were the parents without a baby – he was alive, but not at home, and most people didn’t quite know what to do with that. We evolved into parents of a “fragile baby.” After our son was discharged from the NICU, we had a full nursery – and very full hands with all of his appointments and after-care – but our empty house ironically spoke the loudest. By the time our family was whole, our newborn was no longer “new,” and the novelty had mostly worn off, even though that was the time we needed support the most. We had expressed the importance of caution and set reasonable boundaries around our immunocompromised baby but hoped that wouldn’t deter people from embracing our family with open arms. Our days, however, were mostly spent alone. Invitations to events and gatherings were minimal, as we were the parents who “kept their baby in a bubble.” We appreciated the ones that did come that much more, even the ones we had to decline due to strict schedules, inaccessibility, or impossibility. We were thrown into a world that wasn’t typical and was, therefore, unrelatable and not understood. Visits weren’t common, but that made us even more grateful for the ones that reached out and the most thankful for the three of us. Now, we’re the parents of a child with disabilities. A lot of our days look the same, spent inside the same four walls. Being amidst a global pandemic during the time of COVID-19 hasn’t changed that much for us, aside from growing our fears of germs that could devastate our child. Our schedules are packed with therapies, specialists, and everything in between. Preschool should have started in September but remote learning was not an option for our family, so I homeschool throughout my workday. We’ll try to re-enroll next year. We’ll survive and have gratitude for the moments that would have otherwise been missed. The world around us is busy, and we are busy, too, but we’re usually lost in the chaos. In the “global competition of busyness,” we lose because: Our busy isn’t noticed. Our busy is isolating. Our “busy” feels like it doesn’t count in the eyes of others. It’s not baseball games, school awards and playdates, it’s like muscle stretches, occupational therapy and feeding practice. But, we’re not here to compete. That’s OK. Our world is lonely, and it’s mostly unseen, but we are resilient. There are people in life that take the time to see you, though, and those friends are amazingly invaluable. They’re the ones that go out of their way to bring you coffee because you “deserve it,” who visit on the holidays because they want to be a part of your “normalcy,” and who drop by unannounced just to give you the (masked) hug you so desperately needed. They’re the ones who know what’s going on in your life, ask you about the important appointments you dread, and who listen to you go on and on about how you’re “trying this new thing in physical therapy” or how you think it’s “so interesting that this bodily system affects this other part of the body in this way.” Our circle had changed in the trajectory of life, but the ones who stay mean everything. They’re irreplaceable and are worth so much more than those who come and go or don’t see the beauty in a world that is technicolor instead of black and white.

Kristina Mulligan

My Child With Cerebral Palsy Doesn't Need to Be 'Fixed'

I am a fixer. By nature, by design, in all ways, I am a helper — even my Enneagram says so. I always have been. At the beginning of all of this, sitting in labor and delivery with my barely-there baby bump, my first instinct was that I could fix it. I thought I could make it go away. I didn’t “fix” my infertility, but I investigated doctors, options, costs, procedures and laid out a plan of action. I threw myself into research. That was my way of not only distracting myself, but making my soul feel less helpless. My body may have been broken (which is what I thought at the time), but my mind wasn’t. Laying in that hospital bed, though, was the first time in my life there was nothing I could do. My child, the one I hoped and wished I would be blessed with for so long, was coming 12 weeks early. We were thrown into conversations about DNRs, transfusions, disabilities and odds of survival. Before his first breath, we were making decisions regarding life and death. I couldn’t stop it. It was out of my hands. Then Flynn was born. I saw his face, and in an instant, I loved him more than anything or anyone else in this world. I couldn’t change the situation, and even though my guilt tried to convince me otherwise, there was nothing I could do that I wasn’t doing already. I could, however, throw myself back into research and learn everything about prematurity and pre-term infants. Post-NICU discharge, I read every article, checked every book out of the library, learned every statistic, and saved every organization and non-profit website to my favorites list. Being a “preemie mom” became my thing. I owned it and I was good at it — whatever that means. Then came Flynn’s diagnosis of cerebral palsy and PVL. I had to start all over. I had to fix this… But you cannot fix what isn’t broken. And Flynn is the furthest thing from damaged. He’s beautiful in every sense of the word. He’s kind-hearted. He’s determined. He’s stubborn. He’s fierce. He’s Flynn. You know what did happen in all of this, though? This life fixed me. This existence, you know, the one I was so terrified of living? It showed me what it means to be better, to know more, to be who I was meant to be. I’m not sugar-coating the difficulties each day carries or underestimating the weight I carry, but I do know it’s worth it. There is no “cost” to this life, even though I often feel like I’m burning the candle at both ends, only reward. You bet I’m trying to find my place and have a voice in the “Parents of Kids With CP” community. I’ll always be a fixer, it’s in my DNA. I can’t fix that part of me, ironically. Of course, any parent would give anything to take struggles away from their children. But now I know what truly needs fixing: society needs fixing, not my sweet boy.

Kristina Mulligan

When Your Child Is Newly Diagnosed With Cerebral Palsy

“A diagnosis is not a prognosis,” a wise doctor once said to me, as I was deep in panic about what Flynn’s life would be like. Over time, it became my mantra and it comforted me as we were transferred from specialist to specialist. “A diagnosis is not a prognosis,” I would repeat to myself often. After countless appointments and tests, I grew comfortable with the labels being thrown onto the table and gained medical knowledge, preparing myself for the day we got the answers we were looking for. I knew giving a name to symptoms wouldn’t change who my child was, it would just help us with treatment, open doors for necessary programs, and allow us to gain insight for what our future may look like. I was confident. I was trusting my instincts and pushing for answers, being the advocate I have been striving to be for his whole life. On our long ride out of state to see our fourth neurologist, I repeated my mantra to myself over and over again, a diagnosis is not a prognosis. Over a year had gone by since Flynn’s abnormal MRI, and differing opinions had caused our family a lot of stress. To some, I was on a hunt for answers that didn’t exist, possibly Bigfoot or the Loch Ness Monster. I simply couldn’t settle for not knowing what I knew was there, I felt it in my gut, and it made me sick that we were losing time. It was time without proper medical care, adequate services, and countless other things that popped into my head when I was awake at 3 a.m. The waiting room was brightly colored and welcoming, and “Moana” was playing on the television. The 10-minute wait before getting into our room felt like days, but we smiled and enjoyed the time to sit and just be. I knew whatever came of that day, we would all be OK, but I didn’t know if I could handle another “wait and see.” That’s a land of helplessness I lived in for far too long, and I could no longer watch my baby struggle and not know why or what to do. I was anxious for the outcome, but also for not knowing how hard I was going to have to fight. When we got into our room and Flynn’s vitals were taken, it wasn’t long before the doctor came in. It was the first time in over a year that someone had taken the time to sit with us, listen to our history and concerns, and explain to us what we were seeing in the MRI and what that meant. I had read the report and seen the MRI knowing it was abnormal, and through my own research knew what this could possibly mean. I was prepared and I knew, a diagnosis is not a prognosis. “ What you’re seeing right here is periventricular leukomalacia. ” Periventricular leukomalacia (PVL) is a type of brain injury that involves the death of brain tissue around the ventricles. The damage creates “holes” in the brain. “ The injury that we’re seeing, along with the concerns and symptoms would classify underneath the diagnosis of cerebral palsy. ” Cerebral palsy (CP) is a term that refers to disorders affecting a person’s ability to move. It is due to damage to the developing brain either during pregnancy or shortly after birth. In those first moments, I felt vindicated, as the results matched my concerns and my careful and tedious research. My gut did not steer me wrong, and I was relieved to finally know what to call this — this “thing” that had appeared into our lives amidst missed and delayed milestones and struggles in all areas. For the first time in years, I felt like I took a breath that filled my lungs. That night, I slept through until the morning. The next morning, however, I felt exhausted. I felt overwhelmed, scared and panicked by this new thing I did not understand. I felt like I was starting over. I felt like the community I found through our journey with prematurity was no longer mine to be a part of. I struggled through my workday, my mind occupied with a sudden list of things to do, one that actually did accumulate overnight. We all know the world doesn’t stop turning and I wasn’t allowed the “turnaround” time I seemed to need. For the first time I can remember, I admitted defeat. I took leave from work to allow myself to be broken before putting all of the pieces back in their new places. Someday, Flynn will tell his own story in his own way. His story is not yet written and is not mine to tell. What does this mean for our family? There are a lot of unknowns, but what I do know is that Flynn has woken up to seize the day every day of his life and this diagnosis hasn’t changed a thing. He knows no bounds and has taught me the important lesson of how and why to not set limits, not for myself and certainly not for others. I am still stumbling through the beginning stages of my new role. I’ll find my way and start a new narrative — I did it before and I can do it again. We all become what we need to be. Disability often comes with judgment. It comes with the stares, the comments, the looks. It comes with the hard days. We experienced all of this even before this defining appointment. The days, both good and bad, also end with family, and we are capable of tackling those hard times. And it’s important to share our story, so everyone knows the face behind the disability. We need to say it out loud. This makes inclusion easier, and when inclusion happens, the judgment stops. When you add kindness, the hard days aren’t as hard anymore. After all, a diagnosis is not a prognosis and now I know this for sure.

Kristina Mulligan

When Your Child Is Newly Diagnosed With Cerebral Palsy

“A diagnosis is not a prognosis,” a wise doctor once said to me, as I was deep in panic about what Flynn’s life would be like. Over time, it became my mantra and it comforted me as we were transferred from specialist to specialist. “A diagnosis is not a prognosis,” I would repeat to myself often. After countless appointments and tests, I grew comfortable with the labels being thrown onto the table and gained medical knowledge, preparing myself for the day we got the answers we were looking for. I knew giving a name to symptoms wouldn’t change who my child was, it would just help us with treatment, open doors for necessary programs, and allow us to gain insight for what our future may look like. I was confident. I was trusting my instincts and pushing for answers, being the advocate I have been striving to be for his whole life. On our long ride out of state to see our fourth neurologist, I repeated my mantra to myself over and over again, a diagnosis is not a prognosis. Over a year had gone by since Flynn’s abnormal MRI, and differing opinions had caused our family a lot of stress. To some, I was on a hunt for answers that didn’t exist, possibly Bigfoot or the Loch Ness Monster. I simply couldn’t settle for not knowing what I knew was there, I felt it in my gut, and it made me sick that we were losing time. It was time without proper medical care, adequate services, and countless other things that popped into my head when I was awake at 3 a.m. The waiting room was brightly colored and welcoming, and “Moana” was playing on the television. The 10-minute wait before getting into our room felt like days, but we smiled and enjoyed the time to sit and just be. I knew whatever came of that day, we would all be OK, but I didn’t know if I could handle another “wait and see.” That’s a land of helplessness I lived in for far too long, and I could no longer watch my baby struggle and not know why or what to do. I was anxious for the outcome, but also for not knowing how hard I was going to have to fight. When we got into our room and Flynn’s vitals were taken, it wasn’t long before the doctor came in. It was the first time in over a year that someone had taken the time to sit with us, listen to our history and concerns, and explain to us what we were seeing in the MRI and what that meant. I had read the report and seen the MRI knowing it was abnormal, and through my own research knew what this could possibly mean. I was prepared and I knew, a diagnosis is not a prognosis. “ What you’re seeing right here is periventricular leukomalacia. ” Periventricular leukomalacia (PVL) is a type of brain injury that involves the death of brain tissue around the ventricles. The damage creates “holes” in the brain. “ The injury that we’re seeing, along with the concerns and symptoms would classify underneath the diagnosis of cerebral palsy. ” Cerebral palsy (CP) is a term that refers to disorders affecting a person’s ability to move. It is due to damage to the developing brain either during pregnancy or shortly after birth. In those first moments, I felt vindicated, as the results matched my concerns and my careful and tedious research. My gut did not steer me wrong, and I was relieved to finally know what to call this — this “thing” that had appeared into our lives amidst missed and delayed milestones and struggles in all areas. For the first time in years, I felt like I took a breath that filled my lungs. That night, I slept through until the morning. The next morning, however, I felt exhausted. I felt overwhelmed, scared and panicked by this new thing I did not understand. I felt like I was starting over. I felt like the community I found through our journey with prematurity was no longer mine to be a part of. I struggled through my workday, my mind occupied with a sudden list of things to do, one that actually did accumulate overnight. We all know the world doesn’t stop turning and I wasn’t allowed the “turnaround” time I seemed to need. For the first time I can remember, I admitted defeat. I took leave from work to allow myself to be broken before putting all of the pieces back in their new places. Someday, Flynn will tell his own story in his own way. His story is not yet written and is not mine to tell. What does this mean for our family? There are a lot of unknowns, but what I do know is that Flynn has woken up to seize the day every day of his life and this diagnosis hasn’t changed a thing. He knows no bounds and has taught me the important lesson of how and why to not set limits, not for myself and certainly not for others. I am still stumbling through the beginning stages of my new role. I’ll find my way and start a new narrative — I did it before and I can do it again. We all become what we need to be. Disability often comes with judgment. It comes with the stares, the comments, the looks. It comes with the hard days. We experienced all of this even before this defining appointment. The days, both good and bad, also end with family, and we are capable of tackling those hard times. And it’s important to share our story, so everyone knows the face behind the disability. We need to say it out loud. This makes inclusion easier, and when inclusion happens, the judgment stops. When you add kindness, the hard days aren’t as hard anymore. After all, a diagnosis is not a prognosis and now I know this for sure.

Community Voices

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