“It’s a boy!!” For the third time in 6 years, I heard those familiar, beautiful words.
With a perfect 10 on his APGAR score (the test given just after birth to determine how the baby tolerated birth and how he’s fairing outside the womb), I felt on top of the world. My husband Steve jubilantly returned home to tell our 2 sons that another boy was added to the Team Degodny roster and I relaxed in my hospital bed as they took Max away to clean him and run the normal tests. I didn’t think anything of it when they calmly told me they were keeping him down in the Neonatal Unit to run a few more tests to see what his mild Apnea was all about. About an hour later, they wheeled me down to see him in the NICU and as my beloved obstetrician walked in, I saw her face and knew something wasn’t right. She said, “We need to talk,” and as the walls started to close in, I remember feeling like I was leaving my body and watching myself scream, “Is my baby OK?!” She then held my hand as the neonatologist explained to me that Max had suffered an in-utero stroke. I floated outside my body as she expressed in a deadpan voice words that I will never forget: “Max may never walk. Max may never talk. Only Max knows what Max will be.” I remember thinking it doesn’t matter what I do with my body or how loud I scream because it’s all only a dream. It was the first time I fully understood what the word surreal truly meant. I was floating in a sea of despair and disbelief and now I had to call Steve and tell him to come back to the hospital.
As I sat with Steve and now heard for the second time about Max’s sobering prognosis and that “kids that come from a higher socio-economic situation tend to fare better with this diagnosis,” I already could feel myself moving from the stages of shock and acceptance to an action-oriented mindset. I remember hearing that and thinking how infinitely unfair our medical system is because what that told me is that those that can afford to make prioritizing and paying for therapies their full-time job, will have a more successful outcome. I was at the time a stay-at-home Mom and had great insurance from Steve’s job so we were definitely among the fortunate, a fact that we would never take for granted and that would later become part of our mission. Within hours I had begun to reach out to my family, my friends, my entire network, telling my story and looking to connect with people who had been through something similar. As it turns out, it wasn’t difficult to find as I discovered that perinatal strokes occur in roughly 1 in 4000 live births in the US alone. Every person I spoke to told me stories of how their child was thriving post-stroke, the therapies they’d done, the full lives their children were living. I knew then, in my deepest parts of Knowing, that Max would be OK. My higher self was reassuring me that no piece of paper, no medical professional was going to tell me who and what my child would be. As we prepared to take Max home after one week in the hospital, I asked the doctors, “Barring any milestones that he may or may not hit on time, am I otherwise taking home a healthy baby?” When they answered yes, I breathed a deep sigh of relief and knew that all I needed to do was stay in the now and deal with what was in front of me in each moment, a lesson that I will go back to over and over, forever and always.
Although it was temporarily reassuring to hear our pediatrician say she would be the “quarterback” of our team, I would quickly realize that I was and would always be the real team captain and that it would be up to me (with Steve’s help) to assemble our A Team… and that is exactly what we did. Max started at home Physical Therapy when he was 8 days old, Occupational Therapy at 4 months, Speech at 6 months, with Cranial Sacral and Vision therapies
thrown in for good measure. We didn’t have to make any roster changes with family and friends as the people we already surrounded ourselves with were an A Team of supporters, cheerleaders, listeners and believers. Despite years of 8 therapies a week, all of Max’s milestones came late which made them all the more joyous when they did come. To this day, the video of a 26-month-old Max walking for the first time towards his reflection in the window is the most spectacular 15 seconds of film I’ve ever witnessed.
As Max turned four and we started to see behavioral challenges, I learned that strokes can effect a person more than just physically. I would quickly learn that many of these kids suffer from ADHD, impulsivity, emotional dysregulation, social/emotional challenges, difficulty making friends, learning differences and processing challenges. Max struggled with all of it and handling rages and outbursts became our new normal as other behavior specialists and medical professionals joined our A-Team. We began to incorporate different methodologies and systems to try to help Max become aware of and manage his behavior. The Zones of Regulation became a common part of our vernacular and Max learned how to color code his moods, behaviors and impulses. He learned what would help him get back to the calmer Green Zone and what his body felt like when it was moving through Yellow and into the completely disregulated Red Zone.
Daily life with Max was challenging and all-consuming. One thing that never changed was my willingness to tell my story as I never knew who might have the perfect product, provider, piece of advice to offer. I also believed fiercely that silence can breed shame and I wanted to teach Max from an early age that we all have a story to tell and that there is real power in owning it. When strangers asked him why he was wearing a hand brace or how he could walk with casts on both his legs, I allowed Max to answer himself so he could know his own strength and feel empowered by his answer.
There were so many things that I took for granted with my older boys that were incredible challenges with Max. Just getting shoes on over his orthotic devices left me in a puddle of sweat and/or tears. I used to tell my nieces about the products I was going to create to help make life easier for Max. Any obstacle we faced, I would search the internet to see if a product existed to tackle it and if it didn’t, I would daydream about creating it. And then one day, the whispering inside me grew louder, the dream seemed more plausible and Max & Me was born.
Our mission is to create products inspired by Max but made for everyone. The Inclusion Revolution means that there doesn’t have to be a choice between cool products and items that work for the Extra Needs market. Our first product is fun and functional socks that can be worn with or without orthotic devices. When Max was younger, I used to buy him Men’s XL basketball socks, put them on him inside out and then fold them over his AFOs like you would a shin guard. The problem is that there was always extra sock bunching out the back and the pattern was upside down. Our Max & Me socks have a no-heel design so One Size Fits Most and the pattern is printed on both sides. Whether you wear them pulled up or folded over, the pattern is always right side up. Kids that wear orthotic devices are now able to express their
individuality through their socks and their friends without disabilities can wear them too. This is true inclusion and part of our company’s DNA.
But we don’t just want to make products; we want to create community and inspire people to share their own stories. We choose to align ourselves with organizations and people that share our mission, with whom our purposes are aligned. I do not believe in coincidences and when our very first follower on Twitter was A Stroke of Luck, I knew it was meant to be. Not only were Craig and his team loving, supportive and amazing, but Craig had invented a post-stroke Green, Amber & Red strategy that I could easily teach to Max because he’d had experience with something similar in our behavioral interventions. When Craig explained it to me, I couldn’t believe that nothing like this had ever existed for post-stroke recovery! It was genius, simple and revolutionary; I was completely inspired.
At Max & Me, we believe in the power of owning your truth, leading with your gut, being open to all the magic that’s out there for Max and for all of us. I want Max to witness what can happen when Passion meets Purpose and I hope that Max & Me can serve as a reminder throughout his life that anything is possible.