Betsy Pilon

@betsy-pilon | contributor
Betsy Pilon serves as Executive Director of Hope for HIE (hypoxic ischemic encephalopathy), a non-profit focused on improving the quality of life for children and families affected by HIE through awareness, education and support. Her son, Max, was diagnosed with HIE after he was born, resulting in cerebral palsy, and a few other diagnoses.  She and her family live in West Bloomfield, Mich. and enjoy the many lakes and four seasons Michigan has to offer.
Betsy Pilon

When My Son With HIE Had His First Seizure

Just a few days before the Christmas holiday, my 4-year-old and 8-year-old children were buzzing with excitement. They begged us to have sleepovers in each other’s rooms, and we happily obliged, seeing their joy earlier in the year during the pandemic when they were looking for new adventures in an uncertain time. My husband turned back on the video baby monitors we’ve continued to use well out of infanthood, “just in case they decide to cause shenanigans in the middle of the night.” At 5:30 a.m. just three days before Christmas, something woke us up. “Was it the dog? Was our pandemic puppy barking? If it is, I hope Mike will get her and let her out so I can get some additional uninterrupted sleep,” I thought. And, then we both heard a jarring rhythmic, clicking and gagging noise from the monitor. We both got up quickly, heading into our daughter’s room. Our son had been sleeping on the floor, his choice despite our many efforts to have him sleep in his bed, and we caught him unresponsive in the middle of a tonic-clonic seizure. Immediately, like a well-orchestrated symphony, Mike ran to get his phone to call 911, I made sure our son was on his side, as his fixed gaze turned my stomach, and I checked his breathing and vitals “…good… he’s breathing… good… he’s not turning blue… is this really happening? I need to get this on video.” I grabbed my phone as my husband whisked our 4-year-old, who had woken up thinking her brother was having hiccups, to our bedroom. I captured roughly 9 seconds, which was plenty, and continued to monitor and pray for what seemed like eternity for the seizure to stop. Shortly after it did, lasting about 2-3 minutes, I asked our son to give me a thumbs-up, and he quickly did. A few minutes later, he was able to verbalize answers to questions, and was slowly coming out of the fog. Just as he answered, three EMTs were entering my daughter’s bedroom, responding in less than five minutes to our house, as my husband threw a mask at me to put on. By the time they got him in the ambulance, our son was cracking jokes, wondering why it was so cold outside, and exclaiming how excited he was to ride in an ambulance. My heart was pounding as I climbed into the back of the ambulance, on the way to the trusted hospital that saved his life in 2012. When Max was born in 2012 with HIE, he was a kick count save, but very very ill. He was transferred to the large high-level NICU in downtown Detroit, and spent roughly three weeks there, where he, gratefully, never experienced neonatal seizures which are quite common in HIE. When we were told of the extent of injury they saw on the MRI, and long-term outcome possibilities were mentioned, we knew he was at risk for developing epilepsy. But each passing year he didn’t, and our neurologist told us this was good news and each year seizure-free meant it was less likely he would ever develop them. In my work with Hope for HIE over the last two years, I have represented the organization in several epilepsy-focused groups, despite my own child never experiencing a seizure at that point. I learned about infantile spasms and the connection to HIE, saw friends whose children were previously seizure-free develop them at ages 4, 6, 8… and I learned about seizure first aid, and the importance of capturing seizures on video for medical evaluation. The reason my husband and I were able to keep calm and succinctly implement these seizure first aid best practices, is because of the community education that comes from connecting with over 6,000 families worldwide. Currently, we are working to develop more seizure and epilepsy-related educational programs for our community. I want everyone who has to go through this terrifying experience to feel empowered and supported like we did in this most vulnerable moment for our beloved child. We don’t know what this next chapter will bring, but we know we will once again find the best ways to support our child through this new plot twist because of Hope for HIE.

Betsy Pilon

If You Could See What I See When I Look at My Child

If you could see what I see… You would see a little boy who is full of laughter, who is full of imagination, who is full of life and who is full of adventure. If you could see what I see… You would see a fighter, you would see a great friend, you would see a hard worker, you would see a natural athlete. If you could see what I see… You would see only the good, only the possibilities, only the victories and only the bright future ahead. If you could see what I see… You would see an unexpected road we’ve traveled, but one that is truly breathtakingly beautiful. But instead… You see heartache. You see disability. You see brain injury. You see difficulty. I’m afraid what you see is a “worst case scenario.” Oh how I wish people would only look at this kid through my eyes. Maybe the stigma around brain injury wouldn’t be so hurtful and harmful. We want to hear your story. Become a Mighty contributor here .

Betsy Pilon

What Pictures Not to Post Online of Your Child With a Disability

As parents of children with disabilities, we have a complicated job. Social media can connect us easily to others who “get” our path and we get comfortable with sharing the good and the bad, the ups and downs, the heartbreaks and triumphs. But, there’s something we have to ask ourselves before we share certain pictures of our children. And I’ve seen this issue increase across groups and news feeds where people want to show “the hard side” of parenting a child with a disability. There’s one, big, simple question to ask: Does this promote dignity and respect for my child? Please, fellow families, please take a moment and pause before you post the picture of your child laying in their own bodily fluids. Please remember while bathtub pictures are embarrassing for teenagers to reflect on, pictures of children covered in feces or vomit takes it to a level that does not promote dignity. Would you like the same posted without your consent? Your narrative of struggle and heartache is valid. But please, please remember a picture is worth a thousand words. Make sure those words aren’t those that cause more heartache to you or your child. We want to hear your story. Become a Mighty contributor here . Thinkstock image by dangphoto2517

Betsy Pilon

Realizing 'Milestones' Aren't Everything as Parent of a Child With HIE

I’ve seen a lot of posts recently throughout many of the support forums I belong to about HIE, and about the amazing recoveries many children have from HIE. If that doesn’t happen to be you, know that your journey is a-OK too. There is immense joy, hope, and immeasurable love that comes from each part and each outcome. I remember being in your shoes. Holding my breath for every milestone. Some happened on time, some didn’t. When they didn’t, I thought “maybe he’ll catch up!” Sometimes he did; sometimes he didn’t. Each stage of this journey is like opening a present. Some boxes can be clearly discerned by the shape of the box, or how it sounds when you shake it and are “what you see is what you get”, and some are like those boxes that hold more boxes. One of my greatest “ah-ha!” moments was when I read through three different stories of parents just like me, with three very different outcomes. Each family went on to have a second child. Each mom held a career they were passionate about. And each still has a marriage that is intact. One child is unaffected, one is mild to moderately affected and one is more severely affected. Guess what? Almost five years later, it’s great that my kid can check some boxes off on charts, but it’s most important to me that he’s happy and loved. The challenges still come and go, but they aren’t as intense as they once were. I also know as other things come up, I have an army that will share their strength with me when I need it most. You have that army, too! So, today, I just want to send hugs to all of you on this journey. You are all amazing parents and I am in awe of your willingness to help and encourage other parents who are traveling on this journey. No matter what, we are in it together. We want to hear your story. Become a Mighty contributor here . Thinkstock photo by Lacheev.

Betsy Pilon

Finding a New Career After My Son's Brain Injury

When my son, Max, was born over four years ago with hypoxic ischemic encephalopathy, my entire world shifted. Not only were we thrown into a complete tailspin of unknowns with his recovery from a brain injury, but I was a new mom… and I was a mom with a career. I had always known I wanted children, but focused much of my time building my career and always figured having a child would just fit into our life easily and I’d join the legions of parents who work outside the home. I transitioned about as well as a jet landing in the middle of a hurricane. It was rocky and rough, the course changed, and for a while, I was surviving in a fog. About two years ago, I landed. I landed in a place where I didn’t recognize myself, or my life, and finally felt that I could plan the future knowing how we were going to manage Max’s cerebral palsy, vision issues and other effects of HIE. We began talking about a sibling for him, and this past year, we added Emily into the mix… the best gift we could give any of us. Something nagged at me, though, with my career path. I felt there might be an even better fit where I could blend my personal and professional talents and passions. While the job I had was stable, flexible and purpose-filled work, something was missing. A few months ago, I found myself sitting across the table from two incredibly passionate leaders of an independent school for different learners. They spoke about neuroplasticity, and viewing each child as an individual, having an unshakable belief that each child can and will thrive, learning how to turn a learning challenge such as dyslexia or ADHD into an opportunity. Every day, students with learning challenges have a school that believes in them. I knew I needed to work there. I knew the passion I had and the person I had become through the trauma, grief, and uncertainty would be exactly the lens needed for that role. And so, I began the next phase of my career. I knew the instant I was on a tour during my first parent Open House that I was in the right place. While connecting to a mother whose son had been diagnosed with dyslexia, I found her words were my words: “We got the diagnosis 15 months ago. I’ve tried to learn about all the different educational modalities, treatments, research that I can. I’m looking for hope.” Her voice was my voice. Her fears were my fears. She was looking for what I continuously seek for my son. I know that in this role, I can pass along reassurance, kindness, empathy and hope to families who feel defeated, who feel lost, and who need to find a community who “gets it.” I am in awe that I get to work alongside the doers, the movers, the dreamers, the empowerment professionals. We are giving children with learning differences the tools they need to not only find the best way to learn in school, but grow into compassionate, kind and strong leaders who can and do self-advocate — as early as first grade! These students will be future writers on The Mighty, or the New York Times. They will add to the number of alumni who come back to be teachers. They see the strengths in each other, and they are the leaders of tomorrow building a better world for all. There are so many difficult things that can come out of a traumatic experience with HIE, or any challenge that life may throw at you. But there is also great hope, and great opportunity to turn that experience into something marketable, something tangible and something transformational. We want to hear your story. Become a Mighty contributor  here .

Betsy Pilon

Why We Took Our Son to a Game Instead of Physical Therapy

Life can be pretty overwhelming when your precious child receives the diagnosis of h ypoxic ischemic encephalopathy  (HIE). Your hopes and dreams of motherhood shift, and your life is intensely focused on therapies, doctor appointments and research. You wonder how people are able not only to attend all of these appointments, but also manage to implement the slew of home programs that occupational, physical and speech therapists hand out. And what about actually having the time to enjoy motherhood? The first 18 months of my son Max’s life were spent this way. I cried almost every single day during that time. I grieved the loss of control, the loss of what could have been, the rough start, the new normal we were forced into. I also made sure we attended every appointment, asked a multitude of questions, implemented every home program and researched every single mainstream and alternative treatment, no matter if they were applicable to my child or not. All in an effort to find to find a “fix.” How exhausting. I was burned out. My husband was burned out. And, most of all, my child was burned out. Everything was about play with a purpose. Every moment from sun up to sun down. How could we move forward and sustain this pace of life? Like so many, both parents have to work to make ends meet. Around 18 months, somehow the fog started to lift. We were encouraged to take breaks from therapy. Our therapists saw we were drained. We took a family vacation. We learned more about who our son was. We set aside cerebral palsy (CP), vision issues and all the other diagnosis “stuff” and got to know Max, our child. Recently, we took our child to a ballgame during physical therapy time, one of the four weekly sessions he attends. We didn’t do the usual Tuesday night grind of rushing from work to pick him up from preschool to outpatient physical therapy, shoving some sort of dinner at him afterwards or in the car. We picked Max up early. We gathered our gear and played our favorite music on the way to the ballpark. We spent the evening on the carousel and Ferris wheel, ate “baseball food” in the stadium and laughed and loved like the family we always imagined. We refilled our spirits. No doubt this refreshment will help give Max stronger focus and tenacity as he tackles his latest goals. It will help us as parents to power through IEP meetings. It will also give us moments to hold onto when things are hard. And it will help us to remember that above all diagnoses, we are a family, and Max is a little boy, not a medical chart. Sometimes a kid has to be a kid, and you have to take a break from being the therapist and just be the parent. So, to the new mom on the HIE journey with your child, I’m here to tell you this: Keep the faith. You will find that balance, too. Maybe not today or tomorrow, but you will. And you will cherish those times together in the big and small moments that make motherhood truly magical. You got this. I believe in you. And you have a whole community of people who do, too.

Betsy Pilon

Letter to the Nurse Asking About My First, Traumatic Pregnancy

Dear Nurse, Today I was brave. I was braver than I thought I could be. You see, while you do these intake appointments for expectant mothers all the time, you probably aren’t used to tiptoeing around a birth that didn’t go well. Well, this patient almost lost her first baby. When you started asking me to rehash my last pregnancy, I avoided eye contact and prefaced with, “This is a bit traumatic to recall.” You matter-of-factly jotted notes and asked for more details, saying you’d have to do a lot of freehand to capture this story. I already told you all the details you’d ever need are in my charts. I know, it’s a lot. There’s a lot of information in there. From so many doctors. You went over the importance of breastfeeding and skin-to-skin. You asked me if we were able to do that immediately with my son, despite me telling you minutes before he was whisked away too quickly — that the only time I saw him was when he was intubated and then transported in an ambulance to a life-saving, higher level NICU. I told you I didn’t get to hold him until he was 5 days old.  After he had been in brain-saving hypothermic cooling. After they told us about Hypoxic Ischemic Encephalopathy, his devastating brain injury, and the unknowns we would face. Then, you asked a question that for a second crumbled my world. “He’s OK now, right?” I tried to keep it together, and struggled to put together a coherent response. You see, my boy is more than OK. He’s incredible. He’s a miracle. The fact that he’s on this planet is the biggest gift. He’s more than OK. He’s happy, smart and silly. But you looked kind of sad when I said he has cerebral palsy. There it was, the look of pity. I took a deep breath and asked what was next. So we started talking about the plan for this next little life, and it all became real. The fears came rushing back in. Can I trust my body to give this little one a better experience than last time? Will something else go wrong? Will this one be OK? Was this even a good idea? Then, I remembered the legions of brave women who took the leap of faith to have a second child after a traumatic experience. I remembered the only thing I can do is take it one day at a time. So, my dear nurse, I hope that we will work together to understand that sometimes things don’t go as planned, but they can still be OK. With hope, all things are possible. Your Patient, Betsy Want to celebrate the human spirit? Like us on Facebook. And sign up for what we hope will be your favorite thing to read at night.