I found myself frozen where I stood in Target recently. A memory of Max, one that resurfaces often, popped in my head as I approached the kids’ clothing section. I stopped in my tracks, hoping if I stayed still, I wouldn’t just see him in my mind, maybe I’d feel him.
Max was 2 years old at the time. He was riding in the front of a bright red Target shopping cart. He was eating while we shopped, which meant there was a long tube that ran from beneath his shirt to the feeding pump backpack sitting next to him in the cart. His food, “homebrew” as I called it, was very slowly being pushed into his stomach while we ran our errand. I’d just taken a picture of Max, wide-eyed and precious, when I suddenly sensed he might throw up, a common occurrence in his first few years. I grabbed a swaddling blanket, which was more efficient for us than a burp cloth. Max started to vomit, and I became peripherally aware of our audience. Passerby were staring in disbelief at the amount spewing out of my very small child and they were curious, it seemed, about the tube draping from beneath his shirt. I turned off his feeding pump and tried to calm him. He continued to vomit as a mother and her gawking children walked by. My body was on fire. I understand the sight must have been hard to ignore, but how I wanted everyone to just keep moving so I could help my son without hearing “oh my” and “eww” in the background. One woman asked if I needed help and even her kindness irked me. I didn’t want attention, period. After a couple minutes, I’d gone through two swaddling blankets and Max and I were both covered in vomit. He was crying hysterically. I disconnected him from the pump and pulled his sweaty little self from the cart. I held him to my chest and sat cross-legged, right in the crux of four clothing racks. I talked to my boy calmly, I pressed my lips to his curls and soothed him and I put us inside a bubble, where nothing else mattered, not the store we were in, or the people around us, or the mess that covered us. Those details disappeared and all I could feel was the innate desire to protect and love and comfort my child and make everything better for him. And I did. By the time I rose to my feet, Max was calm and smiling. The most satisfying sense of accomplishment coursed through my body. I have never felt so sure of who I am and what I’m here to do.
And though our days were mostly wonderful, and Max wasn’t defined by struggles, he and I did share many occasions like the one in Target. His quarterly cancer screenings, for example, consistently yielded distress. Max was a difficult stick, so drawing blood was always a harrowing feat. He’d pour sweat and vomit as a nurse tightened a tourniquet and poked him in various spots until she got what she needed. It was my job to hold him still, restrain him, sing “Big Red Car” over and again and pretend as if everything was fine. But everything wasn’t fine. My baby was hurting, which meant I was hurting. I hated having to offer his precious, fat fingers, feet and arms to a sharp, scary needle. It wasn’t fair and, though I loved the nurses, I spited them in those moments. When it was over, I’d wipe the sweat from Max’s brow, I’d clean up the vomit and I’d hold him as we’d wait to meet with the oncologist. We’d go into our bubble where nothing else mattered, where delighting in each other was our only focus, where the world could catch fire, but we were together. I’d tell him it was all over, everything was fine, Mommy loves you so much, buddy. As always, we got through the drama together and there we were, holding each other and smiling.
Knowing that’s how we’d always end up is what got me through the tough parts back then. The day might be rough, but the promise of each other was so reassuring and peaceful. What contentment I found in tucking him in each night and later, tucking in all three of my boys, one after the other. I’m convinced that nothing will ever be as fulfilling as standing in my upstairs hallway, looking at three bedroom doors that concealed my three happy, beautiful, sleeping boys. It was my dream to fill up our house and I did. It was the very best thing that’s ever happened to me, getting to create the family I wanted so desperately.
Time carries on and I do my best to keep up, but I stand still a lot these days, whether it be in Target or my upstairs hallway. I concentrate intently and engage all my senses as I drift into moments with my boy. I feel incredibly close to him, connected in a way that still feels like our own bubble, where there’s so much love and safety. It will never be enough, it will always hurt, but I’ll seek any moment I can have with my Max. As I constantly long for the sight of his precious face, the sound of that unbridled laughter and the weight of his sweet body in my arms as I carry him up to bed, I cling to the promise of us being together again.
While this foundation has served others so well, I admit it has also served me. The need to do big things in Max’s name is just that, a need. Trust when I say that having a foundation in memory of your child is challenging in so many ways, but it’s something I must do, for Max and for myself. Max’s magic is too big not to be shared. I need his legacy to thrive as much as I need water, truly. I want everyone to know how loved he is, how proud we are, how he could make the simplest of things feel extraordinary, how it’s so wrong that he’s not here for you to meet him, but I’ll do anything to share his radiance with you. Along the way, as we’ve done great things for others in Max’s name, I’ve realized how necessary the foundation is for me. I must pour myself out to avoid being swallowed by my grief. I’m grateful for the opportunities this foundation has allowed me, the people I’ve been able to meet, the differences we’ve made and the story we’re continuing to write for our oldest, beloved boy. He effected a vast community throughout his 6 short years. He redefined “special needs” for us and blew so many hearts wide open with his jubilant spirit. It is my hope that his spirit will continue to affect others, especially the special needs community, which we are so honored to be a part of and serve.
I’m so proud of what the foundation has accomplished so far. Since we began in August 2018, we have given $70,000 to the special needs community.
· We’ve partnered with the Miracle Babies Foundation at Northside Hospital to assist families whose babies have extended stays in the NICU. We have provided $35,000 (about 26% of Miracle Babies’ annual balance) to help relieve the burden of extra expenses – whether they be medical or logistical, as extra costs for food and travel is an issue for many families. We have served 70 families so far. We have also funded the purchase of a Super Tory baby simulator, which trains the nurses to care for babies with various issues.
· We created The Maximus Janton Scholarship Fund with The Music Class, an early childhood program founded in Atlanta, now offered in 1,000 locations nationwide. Our scholarship fund covers the tuition cost for special needs students. Many special needs parents are burdened with extra expenses and are unable to afford classes like this, which are so fun for both the child and parent. So far, we have assisted with over 115 scholarships.
https://themusicclass.com/center/the-music-class/scholarships
· We have funded the tuition for 40 special needs children and adults to attend FOCUS + Fragile Kids camp, an extra special summer camp, equipped with nursing care.
· We partnered with All About Kids Therapy Services on a book drive to benefit Babies Can’t Wait clients. The BCW program usually evaluates over 300 kids a year. We gathered over 350 books during our inaugural drive in 2019 and 485 books in 2020!
· We funded the renovation of a sensory room for special education students at Roberts Elementary School in Suwanee, GA. It is a therapeutic environment, acting as a calm space for students to take intentional breaks during their school day when they are overwhelmed. Specific equipment being purchased includes a new hammock swing, LED sensory bubble tubes, fiber optic waterfall lights, adaptive lounge seating (large beanbag chairs) and weighted blankets.
· We have raised nearly $15,000 to support extraordinary special needs families for Christmas. You can read more about them here: The Stark Family , The Moses Family
We are now in the midst of planning our first 5k (more information to come very soon) and we’re looking forward to our 3rd annual Friends for Max Janton Golf Classic on October 19, 2020. Our foundation’s mission is also evolving. We’re communicating with our network of special needs families, doctors, teachers and therapists to decide on more ways to serve the special needs community directly and meet needs that aren’t currently being met. The foundation is growing, and I want to thank you for that. Without support, a foundation can’t thrive. Our gratitude is endless, believe me. Thank you for helping us do great things in honor of our Maximus the Great.