To Our Supporters, With So Much Love

It was about 15 years ago, I was driving down the road, listening to the Making Miracles Radiothon for Children’s Healthcare of Atlanta. As parents sobbed, describing their babies’ harrowing fights, I leaned into the steering wheel to see the road through my tears. I didn’t have much to give, but I donated to the hospital and wished it could be more. How wonderful it’d be, I thought, to have the means to help in a helpless situation.

Now I run a non-profit and do just that. I help families in need. But I never in a million years would’ve guessed how I’d end up in this position.

We were besotted with Max. Still are. He was our first baby, our introduction to that all-consuming, unconditional love that parents know so well. We were rapt by his big brown eyes, full features, wild curls, and goodness, the perfect inflection to the most random words. We’ll never hear the word “door” and not think of Max. When Dan and I say, “I do,” no matter the context, we repeat it the way Max said it. So many songs conjure an image of our boy, his hands in the air, running through the house, a trail of squeals in his wake. His brothers ask us to tell Max stories and, though there’s an abundance, there will never be enough. Max was magic. We miss everything about him and all the memories we never got the chance to create. I had our entire story written in my mind; a lifetime spent together. I pictured Max, Uncle Max as his nieces and nephews would call him, as a grown man, filling our days with joyful wonder. My heart still floats at the thought.

Max on his 4th birthday

It’s been six years since we lost Max, and nearly as long since we began sharing the Maximus Janton Foundation wherever, whenever we can. We have joined legions of bereaved parents who choose to launch a non-profit in memory of their child. Down this path we have found renewed purpose, a way to actively, outwardly continue our love and dedication for Max, a way to share his spirit with the hope that he’ll always be remembered, and that his name will be spoken for the rest of our days, maybe even beyond.

We keep the foundation as simple as possible – no employees and as little overhead as possible. We don’t set fundraising goals; we give what is donated and are constantly amazed by how far that reaches.

The Maximus Janton Foundation created a lot of magic this year, thanks to the generosity of you, our supporters. Every donation feels personal to us, every donor’s name inscribed on our hearts. In previous years, I managed to write handwritten thank you notes for every donation. I hate that I fell short of that this year. Know that if you’ve contributed to Max’s foundation, if you’ve registered for or sponsored an event, if you’ve sent a text with well wishes, if you’ve volunteered, it is not forgotten. Your name is known, and we are profoundly grateful for you.

As we close 2023, we want to share a list of all we accomplished together this year. As you scroll through, we hope you recognize the impact you had. And, as always, we hope you know you’re always welcome wherever we are – at any of our events, at any of our giving opportunities, to help us brainstorm more ways to help – you always have a place with us.

OUR EVENTS

Max’s Moon Run was on May 5th this year, so we called it Cinco de Max! Though the weather kept me on the brink of a nervous breakdown, the good times carried on and we raised $20,000!

The 3rd Annual Max’s Moon Run

The Friends FORE Max Janton Golf Classic was on October 2nd. After sending out just one invitational email, we filled up the tournament with 28 teams. We were amazed! So many familiar faces and many new ones joined us for a gorgeous day at The Standard Club and raised $50,000!

The 2023 Friends FORE Max Janton Golf Classic

The girls at Mint Juleps hosted our annual shopping party on November 11th and we had so much fun! It’s our smallest fundraiser and possibly my favorite. It’s simple, sweet, and requires little to no work on my end – yay! Mint Juleps gave us 20% of the profits from the two-hour shindig, which amounted to $1,400!

Our shopping party at Mint Juleps

Our online donations were incredibly generous in 2023. Some may give randomly, some monthly, and all of them make me smile. This year, MaximusJantonFoundation.org brought in $18,643.36.

Total money raised and donated:  $90,043.36

We provided in a variety of ways this year. While we maintain our scholarship program with The Music Class, they carried over a balance from 2022 and did not require a contribution from us this year. We continued with other annual contributions and were happy to give in new ways.

WE GAVE…

 $1,371.68

We shopped for a local elementary special needs classroom and surprised them with new sensory and learning toys on Valentine’s Day.

Valentine’s Day surprise at a local special needs classroom.

$9,707.75

We surprised two special needs children with customized bicycles this spring. Big thanks to Freedom Concepts!

$5,000

We sponsored a family to attend the Costello Syndrome Conference, where they met with doctors to learn more about their child’s diagnosis.

$1,161.81

We surprised a special needs pre-K teacher and bought everything on her classroom wishlist.

$4,053.90

We contributed to multiple GoFundMe’s to assist special needs families.

$30,000

This year was our biggest annual contribution to the Miracle Babies Foundation, which provides for families at the Northside-Forsyth Hospital NICU. This year’s donation brought our 6-year total to $100,000! We never imagined a number this big. It’s extremely emotional for us, as this NICU is where Max spent his first month of life; it’s where he was named, where so many friendships were formed, and where we first bonded as a family.

 $12,000

In celebration of Max’s 12th birthday on July 24th, we committed $12,000 to support early education special needs classrooms in our community. These funds will be used to create and renovate sensory rooms for students.

 $1,451.55

We purchased a new hospital-grade bed for a man who has special needs and is especially dear to our hearts.

The sweetest recipient of a brand new, hospital-grade bed.

$3,250.70

We catered lunch for 229 villagers and employees at Annandale Village, a non-profit residential community that serves adults with developmental disabilities and acquired brain injuries. We also provided lunch for a staff of 25 at the Northside Hospital Forsyth NICU to thank them for the amazing service they provide hundreds of families each year.

$3,900

Thirty-nine families with children who have special needs participated in Wonder Night at Gwinnett Church on December 3rd. We surprised each family with $100 to help with extra expenses during the Christmas season.

39 families received a gift of $100

$10,801.74

We adopted three families this Christmas. We bought and wrapped all the gifts for two of the families and gave all three families checks, totaling $5,500, to help them through difficult financial times. We also donated a dozen coats and sweatsuit sets to provide for children in need at a local elementary school.

TOTAL GIVE: $82,641.58

We’re grateful for every opportunity we’ve been given to help and never forget that it wouldn’t be possible without you. We thank you with all that we have. Thank you so much for fueling our efforts and for keeping Max in your hearts.

With sincere gratitude,

the Janton family

here is the deepest secret nobody knows

(here is the root of the root and the bud of the bud

and the sky of the sky of a tree called life;which grows

higher than soul can hope or mind can hide)

and this is the wonder that's keeping the stars apart

i carry your heart(i carry it in my heart)

e.e. cummings

RECAP: The 3rd Annual Max's Moon Run

How ambitious I was to think I’d post a recap about Max’s Moon Run a couple days after the event. That was a cute idea. It was May and as any parent of young kids knows, the month of May is December on steroids. That said, it’s now June and I have no further excuses.

 The third annual Max’s Moon Run was spectacular. Would I love to host an event (for once) that is not weather contingent? Yes. Do I believe a tsunami in Georgia could happen no matter if I planned the event in May or October? Also, yes. The good news is that, miraculously, wonderfully, the weather has yet to keep us from hosting a successful event.

 The drizzle was consistent throughout the night of May 5th, or Cinco de Max, as we called it, but so were the smiles. We had 412 registrants (more than ever!), including a slew of walk-ups. We had a group from Annandale Village, a local residential community for adults with special needs, join us, and runners with Ainsley’s Angels, Speed for Need, and ConnectAbility were there pushing at least a dozen individuals in customized racing wheelchairs. We were so tickled to have these non-profits join us.

We kicked off the night with a special surprise. We gifted a custom adapted bicycle to a precious boy named Jaxson Maldonado. Jaxson has four brothers, including his twin, and has wanted to ride bikes with them for a long time. How grateful we were to make this wish a reality. Big thanks to Jaydene Lowe and our friends at Freedom Concepts for creating Jaxson’s bike. His face lit up at the sight of it and we continued to catch glimpses of his elation while his parents pushed him around the park. Jaxson’s surprise set the tone for the evening. It was a precious moment that punctuated why we do events like Max’s Moon Run and the golf tournament, why we have the foundation at all. We want to serve the special needs community in honor of Max and share our love for him with others. Surprising Jaxson with that bike, like everything else we do through the foundation, felt extremely personal and special.

When this mission took shape years ago, we knew we wanted to go back to where our story as special needs parents began: the Northside Hospital Forsyth NICU. The foundation has given a healthy contribution to the Miracle Babies Fund every year to support NICU families with the unplanned expenses that incur during their babies’ stays. Thanks to the generosity of our amazing supporters, we’ve given $70,000 since 2018. This year, our fifth year of contributing, we felt the urge to go big. We surprised representatives from the NICU and Miracle Babies on stage at Max’s Moon Run with a check for $30,000, taking our total contribution within five years to $100,000. It was a huge, emotional moment. We’re still amazed that we were able to contribute so much, and we know we have many to thank.

 The truth is, we’ve never had financial goals for the Maximus Janton Foundation. That may sound weird, but it’s true. Running this foundation is heavy enough, we’ve never wanted the pressure of money to take away from our intention. We host our events and trust that whatever we raise is exactly what we need. We see donations come in through our website and we’re continuously astonished by the generosity and thoughtfulness of others. We are so grateful to our supporters who enable us to serve with Max at the forefront of all we do. Thank you, thank you, thank you.

One of my favorite parts of Max’s Moon Run is seeing some of the same faces each year, faces I recognize only from this event. Mr. Jim, Patricia, Nancy…so many people have attended the run all three years. Many of them are avid runners who participate in 5ks together every weekend and we’re honored that they add Max’s Moon Run to their calendar. They told me they’ve learned a lot about Max over the years. They take interest in him and our mission. Even more, these new friends of mine, they call me “Max’s mom.” These new friends are keepers.

The booths at Max’s Moon Run were a hit! Thank you to Mint Juleps, Get Stacked Beads, Washburn Authentic Woodworks, and Janton Custom Works. Huge thanks also to our beloved Gwinnett Church for providing fun activities for kids and for the face painters with The Off Centered Project who added an artsy touch to tons of faces (including mine).

We were so happy to have The Geeks, a local cover band, on stage all night, and enjoyed yummy eats from Tacos & Tequilas and Black Market BBQ food trucks, and sweet treats from Rita’s, including free ice cream for the Fun Run participants. Chick Fil A- Moore Road also donated gift cards to all the Fun Run kids.

Max’s Moon Run was fueled by some super special sponsors. From the bottom of our hearts, thank you to Syfan Logistics, Iron Tribe Fitness, Ashley & Kale Self, the Tieslau family, the Nash and Faulkner families, and Life Life Counseling. Thank you also to TJ Simmons with Sweet Home Georgia Realty for donating bananas for our 5k finishers and to Gwinnett Church for the in-kind water donations.

Huge round of applause to Anthony Wilkens, owner and trainer at Aspire Personal Training for Women. This amazing guy led our warm-up and will be back again next year- yay!

Great thanks also go to Amy Doherty with the City of Suwanee, as well as her staff and the Suwanee police officers who worked our event.

By all standards (well, maybe not weather), the event exceeded our expectations. I’m so happy to share that together we raised $20,000 for the Maximus Janton Foundation! We’re blown away by this number and are making big plans for our upcoming year.

We will continue sharing Max’s name and legacy and loving on the special needs community for as long as we live. Max’s Moon Run is such a great opportunity for us to be seen and shared and we acknowledge all who helped us pull it off. Thank you so much to everyone who registered for this year’s Moon Run, to all who promoted the event on social media, to all who sent encouraging texts, to those who participated virtually, to all who pray for us – we appreciate you in the most indescribable way.

Since losing Max, we wake with an invisible brick on our hearts each morning, the weight of which increases, depending on the day. Please know that when you say Max’s name, when you share a memory of him, when you acknowledge our sweet boy and honor him through his foundation, you are simultaneously lifting a bit of that brick, helping us focus on love instead of loss. Thank you. You are pushing us and this little foundation along. Our gratitude knows no bounds.

We always knew Max was a wonder. It’s no wonder his foundation is, too.

 The magic continues.

Recap: The 5th Annual Friends FORE Max Janton Golf Classic

Maximus Janton was magic personified. For six years, three months, and three days, he gave us pure love, deep purpose, and all-consuming joy. He made everything look brighter and feel more meaningful. How tickled we were about the future, knowing Max would live with us forever, filling every day with his one-of-a-kind exuberance. What a gift, to wake up every day and see his face, to cup his velvet cheeks in our hands, look into his wide brown eyes and hear him say I love you, or Naynu, as he pronounced it. Would he have always said it that way? I hope so.

How happy we were for Duke and Beau, knowing how their big brother, so proud and loving, would enhance their lives. I imagined all three boys sharing a room at some point. I assumed it might be short-lived, as they’d probably giggle more than sleep, but I craved the experience. I wanted to see Max play baseball for the Miracle League, the bleachers full of friends and family, chanting his name. I wanted to take him to see Mumford & Sons, his favorite band, every year, no matter the cost, no matter the distance. I was so excited that his childlike wonder would never fade. I could see him, our Max at 30 years old, bounding down the stairs to see what Santa brought. I pictured myself in my 70s, running errands with Max by my side, saying “hello” to everyone, leaving smiles in his wake. Thoughts of the future enveloped me like a hug, comforting and warm. Those plans live on in my mind and I continue to reconcile that they’ll never come to fruition. Each day reveals fresh mourning, a reality we could have never fathomed.

Somehow, year after year, the Friends FORE Max Janton Golf Classic doesn’t feel like a day to mourn. It is a day to celebrate our beautiful boy, to remember him, to speak his name over and over, and witness his light illuminating the souls around us.

Many of the golfers have attended all five years. They hold their own special love for Max and don’t refrain from telling us so. The day is filled with hugs, smiles, tears, yes, and words that make us feel less alone. Everyone knows we’re there for Max. They talk about him, ask about him. What I’d give for that to happen every day. In this new life of ours, we’re surrounded by many who never met Max, many who have only seen us with two sons. They innocently refer to our middle son as the oldest, they speak of their 11-year-old children and all I can think about is my boy who would be 11. How often I want to scream, I have three sons! I am Max Janton’s mommy. I love him and I miss him with every cell in my body. He should be here and I’m so mad and so devastated that he’s not.

But at these golf tournaments, everyone knows what’s in my mind and on my heart and they speak the words for me. The love and understanding that washes over us - it’s a spiritual experience. Max feels so close, we feel held in both the joy and pain of the day, and we soak in every second.

This was our 5th annual tournament and our best turnout yet. Dan sent just one e-mail and the event filled up, which is remarkable. The golf carts were filled with a mix of new and old friends, many wearing hats that display Max’s sweet silhouette. We had an amazing show of volunteers and benevolent sponsors. Jordan Sasser, a wonderful singer from our church, sang a rendition of “Living Hope” at the start of the tournament, and a perfect mix of breeze and sunshine surrounded us throughout. We had a robust silent auction, great food, few mishaps – the day was a success by all counts. We are extremely happy to share that the tournament raised $38,000 for the Maximus Janton Foundation!!!

For the first time, we had our boys, Duke and Beau, skip school and join us for the entire day. As they get older, we want their participation in the foundation to grow. Their life with Max would have been immersed in the special needs community, and we’re determined it still will be. We want to teach them how to honor their brother through service. We want them to shake the hands of those who love Max, and who rally around our family, all five of us.

If you had any involvement in this year’s golf tournament, thank you from the bottom of our hearts and thank you for keeping Max in yours.

RECAP: The 2nd Annual Max's Moon Run

Short version

The 2nd Annual Max’s Moon Run was AMAZING! The weather was great, the crowd was wonderful, and we raised $22,000 for the Maximus Janton Foundation. Thank you so much! Scroll to the bottom of the page to see lots of great photos!

Long Version

The weather called for rain all week. Texts started rolling in on Monday, folks asking what our back-up plan was, would we postpone, would we cancel? I felt ill at the thought. When you plan an outdoor event, you take a risk, but man, after pouring so many hours into the preparation, you hope and pray you’ll luck out. And guess what? We did luck out – for the second year in a row.

If you attended the inaugural Max’s Moon Run last summer, you may recall when the sky opened at the end of the night. It was a huge rainstorm, BUT, again, it was the end of the night. We accomplished everything we wanted to do, all that we needed to do, and though the rain soaked our bodies, it didn’t dampen our spirits.

This year, the forecast completely flipped and there were clear, beautiful skies in place of scattered storms. Yes, there were intense winds at the beginning of the night, which prohibited us from using tents and the blow-up arch at the start and finish lines, but so what? Wind shmind. It was a gorgeous night, and I’m not just talking about the weather.

You showed up in droves. You, with your friends, your family, co-workers, and neighbors. You, with your church buddies, school friends, dogs, and children. Though I was on the move all night and felt discombobulated for much of it (I lost and found my speech three times), I made a point of standing still frequently to look around and thank God for a community like you.

How could we pull off a big event in the heart of Suwanee if you didn’t attend? How could we run a non-profit in honor of our boy if you didn’t support our mission? We couldn’t. Your presence, prayers, and goodwill are not lost on us. You carry us in ways I can’t possibly impart.

Planning an event of this magnitude comes with a litany of challenges and sometimes we wonder, is this worth the stress? But then the day comes, and we see you. We picture Max, ping ponging from group to group, the grand marshal of his own run. He’d love it so much. The music, the glow sticks, the outdoors, but know this: it is you he’d love most of all.

Before the race began, a man (whose name I remember, but will keep to myself) approached me, crying. He said he’d read about Max and our mission. His emotion and affection for my son, who he’d never met, was precious. I’ll never forget it. Thank you for caring so much, sir. He spread his arms wide, acknowledging the colorful surroundings, the symphony of laughter created by children and grown-ups – “this is his legacy,” the man said. “I’ll be running in the 5k tonight. I will be running for him.” Then he slid a $100 bill into my hand for the foundation.

It is with GREAT thanks that I share that our night together at Max’s Moon Run raised $22,000. That’s $7,000 more than last year. Do you know how much we can do for the special needs community with that kind of money? A LOT. Thank you, thank you, thank you!

We were grateful for the opportunity to give two big gifts this year.

A couple months ago, I met with All About Kids Therapy Services, Max’s therapy clinic, to see if they had ideas about how to spend some funds from the Maximus Janton Foundation. Together we made an awesome plan to surprise a special needs child with an adapted bike (which is super pricey, for those who may not know).

After a bit of looking around, we landed on the Kerr family – parents Sarah and Sam, big sister Reagan, and Bobby, their 6.5-year-old, extra special little boy.

When I called Sarah days before the event, she was elated. Tears ran down my face as I listened to her squeal. During our call, I asked her to tell me more about Bobby. Her voice sounded like a big smile as she described how much fun her boy is, how happy he is, and how happy he makes others. She told me he’s the “mayor of his school,” that all who know him love him. Her description sounded so familiar. While it wasn’t a requirement that the recipient of the bike be so much like Max, I don’t consider it a coincidence that he is.

Bobby’s face lit up when he saw his bike, especially the squeaker on the handlebar. The crowd cheered through glassy eyes – we witnessed magic together. A former co-worker attended just for that moment and sent me this note after: “I really wanted to see the gift of the bike given because you could never afford to pay what seeing the joy in others’ lives is worth.”

Thank you so much Jaydene Lowe and the crew at Freedom Concepts for all your help with this bike. That’s an experience I hope to repeat.

We also had the privilege of sharing the stage with Sandra Grady and a handful of nurses, our precious friends from the Northside Hospital-Forsyth NICU. We presented them with a check for $20,000 to support NICU families through the Miracle Babies Fund. We have partnered with Miracle Babies for 4 years and, as of Friday night, have given them $70,000. These funds provide relief for families who experience an onslaught of unexpected expenses that can come with an extended NICU stay. We are so grateful for the opportunity to help them. Thank you to our supporters for making this possible.

I want to give a big thank you to Ryan Moore and his band, The UpSide. They put on quite a show. I’d also like to pat my husband Dan on the back for resisting the urge to jump behind a microphone and sing. The temptation is strong with that one.

Thank you to the City of Suwanee, especially Amy Doherty, who is the most positive, cool, calm, and collected ray of light you’ll ever meet.

Thank you to Syfan Logistics, especially Cassie Sullens and Jose Rodriguez, for registering 51 people!

Thank you to all our volunteers- from running booths, to handling registration, handing out bananas and waters, leading kids in warm-ups and orchestrating the Fun Run – I so appreciate you.

Thank you to all our amazing booths and vendors! You added so much to the event and we’re incredibly grateful! Those vendors were: Mint Juleps- Sugar Hill, BeRusted Art, Get Stacked Beads, Camp Gladiator, Chick-Fil-A Moore Road, New Directions, KindTouch Health Services, All About Kids Therapy Services, Sweet Home Georgia Realty, Gwinnett Church, Blazon Apparel, and Jonathan Gross Photography.

Thank you also to our benevolent sponsors: IronTribe Fitness- Johns Creek, Greater Georgia Concrete, Chick-Fil-A Moore Road (Fun Run gift cards), Gwinnett Church (waters for race participants), Sweet Home Georgia Realty (financial and banana donor), Ashley and Kale Self, KindTouch Health Services, All About Kids Therapy Services, and Friends of the Special Care Nursery Forsyth.

Thank you to The Off-Centered Project for their fabulous face paint artist who transformed our little love muffins into cheetahs, lizards, wolves, butterflies, and dozens of other beautiful creatures.

Thank you to Will Smith (not that Will Smith) for the beautiful photos.

Thank you to Sandra Grady and the Northside Hospital-Forsyth NICU staff for attending and to Delane Cope from the Miracle Babies Fund for being a great help.

Thank you to the delicious food trucks that joined us: Edee’s BBQ, KONA Ice, and Mad Italian.

Thank you to Rachel Spain from our beloved Gwinnett Church for kicking the night off with a precious prayer.

Thank you to everyone who made a donation- from $5 to $1,000, seriously, we’re immensely grateful.

We love our Max and miss him every second of every day. Thank you for helping us honor him at the 2nd Annual Max’s Moon Run. Above all, it is my hope that you walked away from the night with great memories, surrounded by people you love, with the name “Max Janton” imprinted on your heart.

And I'll rise up
I'll rise like the day
I'll rise up
I'll rise unafraid
I'll rise up
And I'll do it a thousand times again
And I'll rise up
High like the waves
I'll rise up
In spite of the ache
I'll rise up
And I'll do it a thousand times again

For you
For you
For you
For you

-        Andra Day

Merry Christmas and Thank You

It’s when Kate McCallister returns home and her son Kevin, who has been home alone for days, turns toward her – the scene packs a punch it never did before. I can’t help but see me and Max in the roles, a mother and son separated, a mother desperate to get to her little boy. What bliss when I think of opening my front door to find Max, turning toward me as he stands by our Christmas tree in his monogrammed pajamas. Though it hurts, I allow myself the fantasy every time I watch the movie. I’m sure I always will.

This year, my path led to many other mother-son duos experiencing intense challenges and, for some, devastating loss. There’s my new friend whose baby boy was diagnosed with the same syndrome Max had. A mom whose son was paralyzed in a car accident months ago, and another whose son was paralyzed after a surgical mishap in October. A mother who lost her adult son in a tragic accident, a mom who lost her 5-year-old son just last month. Then there’s a mom whose son with spina bifida had a huge surgery mere days before Christmas.

 Am I looking for them, or is it just a coincidence? I can’t say, but I am drawn to these mothers. They’re the most familiar, precious strangers. I hear their story and, just like the movie, I see me and my own boy. I understand their helplessness and suffering and I’m sick over what they must endure. I’m as lost, if not more so, than them, so I can offer little to nothing. All I have is my presence (which is often a mess in more ways than one), and this foundation.

 Thanks to an incredibly successful golf tournament this Fall, we were able to provide for many families this Christmas. We sent gift cards to some, contributed to a smattering of Go Fund Me accounts, and we went especially big for two families.

 My kids’ pediatrician referred the first – the mother I referenced whose son was paralyzed during an October surgery. Claudia and I spoke on the phone, and she cried about mounting bills, countless hours in doctors’ offices, and the depression that now consumes her little boy. What I’d give to fix it all. I was incredibly grateful, at least, to give her a generous check from the Maximus Janton Foundation. I made sure she understood the money doesn’t just come from my family, but the hundreds of people who support our mission. Thanks to our donors, we were able to give Claudia and her son a bit of relief for Christmas.

Me and my new friend, Claudia

Stephanie, like me, is a mother of three sons. This time last year they were homeless. Now her family of five lives in a small apartment and her husband, a roofer, is gone from sunup till sundown. Her middle son, 8 years old, has spina bifida, and has had many complications recently. Money is extremely tight, often non-existent, and Christmas presents were not a possibility until we were introduced. What a gift to tell this exhausted, stressed-out mother that she needn’t worry, that her kids would be given an amazing, over-the-top Christmas. I asked her to send me their wish lists and we purchased everything, and then some, for her boys. She was grateful and surprised, and I felt so fortunate to play a role in the exchange. If not for the many who give, I told her, this would not be possible.

Stephanie’s middle son who has spina bifida

My boys with gifts for Stephanie’s family

I’m compelled to tell our beneficiaries about you, our supporters, just in case anyone has the misconception that my family funds the entire foundation. I need them to know I don’t, and couldn’t possibly, do it alone. They may see me, but there’s an army in the wings. We’re a small organization. I don’t aspire to be much bigger, as we currently have no overhead and it’s just enough that I can handle, but there are so many who make it all possible. Thank God we have generous people who propel us forward. More than that, those people, you, allow us to share Max’s name, and legacy of love and happiness. You give us opportunities to show, not just tell, our other sons how their big brother continues to change lives. You provide a positive way for a broken-hearted mama to channel her grief, especially during Christmastime. Thank you, sincerely.

Have I ever told you about Max’s first Christmas? It’s a story worth sharing if you have a moment.

He was five months old. We’d just learned he did not have cancer, a suspicion that enveloped us for weeks. Though he was nowhere near sitting up, I purchased Max a child sized armchair from Pottery Barn Kids, brown microsuede with Sherpa piping and his name embroidered in cream. It was a gift I’d purchased months prior, and I couldn’t wait to see him on it. Christmas morning came and we propped Max in his new chair. I began snapping pictures, chirping, and cooing as giddy gals do, while Dan, on all fours, harmonized with his deep, booming voice. Then, though it sounds trite…the sweetest gift. The corners of Max’s mouth quivered and curved upward to form a smile. His very first. Because of low muscle tone, his chubby cheeks didn’t have the strength to smile, not until that moment. There he was, in the chair I’d picked out special for his first Christmas, smiling at us -it felt like a dream. I was beside myself, laughing, crying, cheering. We’d waited and waited and there, as if he’d been holding out just for that day, was our baby, smiling next to the Christmas tree. It was a moment so precious; I knew I’d always remember it. I can’t help but cry at the memory. I also can’t help but smile.

Max’s first smile, Christmas Day 2011

Max's Moon Run

It’s always nerve-racking to plan a big event, hoping people will show up - and what a relief when they do! We have hosted three golf tournaments now (our fourth is October 4th) and I still get emotional each year to see so many golfers driving onto the course. I had no idea what to expect with a 5k…in the heat of July, no less. Would people come? I wanted to host a 5k because we have great relationships with schools, the hospital, local families, and businesses – I wanted an event that would appeal to all of them. That said, not everyone loves 5ks, so I added live music, games, food trucks, and vendor booths to cast a wider net.

It was an enormous amount of work, and absolutely worth it. We had nearly 300 5k registrants (in-person and virtual combined), 500+ in attendance for the night, and we raised just shy of $11,000. Best of all, truly, were the interactions we had with the community and the gift of sharing Max’s name and the foundation’s mission with them. That is what I hoped for most of all. Even after the event, the heartwarming moments continued. Like days later, when I received an e-mail from a 5k participant who wrote that she attended because she remembered seeing Max years ago at a therapy clinic. Her son was also a patient there and, though we never spoke, she saw Max regularly and remembered him these years later. What that means to me, you can’t imagine.

Many attendees at Max’s Moon Run knew Max personally. His teachers, nurses, even his best little buddy from school, Ollie, were there. They loved Max then, they love him still, and I love them for that. There were also many new friends in attendance who never met Max. Some people participated because they have a special needs family member they wanted to honor, some came to support our family, and some came because they love to run 5ks. I’m so grateful for each and every one of them. In my mind, they were all there for Max.

Songs by Mumford & Sons, Max’s favorite band, were played and neon glow necklaces illuminated the crowd. It was a cloudy night that led way to a huge storm late in the evening, but all reports said there was a full moon tucked beyond what we could see. I was happy to read that. The smell of tangy barbecue wafted in the air, and little sticky mouths were stained by Kona Ice treats. There was laughter, music, and fun at every turn - the best kind of chaos- and I know Max would have loved it.

The truth is, I never wanted to host the 5k on Max’s birthday. That was the only availability we shared with the City of Suwanee, so, after some hemming and hawing, I said yes, because I very badly wanted to host this awesome event, which was canceled in 2020 because of COVID.

For the past few years on Max’s birthday, July 24th, I’ve allowed myself to lean into my pain, sink into our memories, sleep in his bed, watch the videos I can’t often bear, bury my face in the clothes still folded in his drawers. I let grief overcome me because the battle is futile.

I do try to create a simple celebration each year on Max’s birthday, which is important for my husband and I, but especially for our other two sons. It’s a heavy day when the dam breaks and every emotion flows freely. It’s the exact opposite of every other day when I feel obliged to hold it together in front of others. I knew if I hosted an event on Max’s birthday, I’d be too busy to slow down and think about him as much as I’d like to and need to. I worried what the ramifications of that would be. What will happen when the adrenaline fades and the weight of grief remains, I wondered. Nearly a month later, I know. I feel depleted, hollow even. I don’t regret hosting this event, but I will not host another on his birthday. Though I always carry Max with me, I’ve yet to have a day since the 5k that I can designate as my day with him, when I can succumb to all that aches and focus on him alone. For some people that might be best…stay busy, keep moving. But for me, I can only outrun the pain for so long before I have to take a knee. I need time, however I can get it, to spend with my oldest boy. I especially need his birthday.

One of my other sons struggled a bit throughout the night of Max’s Moon Run. He’s a sensitive soul and I know so much of his emotion stems from not having Max here with him. His questions and thoughts about Max are always profound and heartbreaking. Max is always on his mind, even at the most random moments, and even more so, of course, at an event in Max’s honor. As the band sang “Happy Birthday” to Max, Dan and I held our little boys in our arms. I was holding the more sensitive of the two when, through his sadness, his sweaty head on my shoulder, he sang every word of “Happy Birthday” to his big brother. It was precious and devastating.

My beautiful, joyful, curly-headed firstborn, the leader of my little pack, would be 10 years old. I can easily imagine his smile and the wonder in his eyes over all those candles. I can see his hands in the air and hear his voice request “more” as we play his favorite songs. No doubt I would have planned a grand celebration. Turns out, I did anyway.

Acknowledgments:

I would like to give a special thanks to Amy Doherty and her team at the City of Suwanee for all  their help.

Thank you so much to Whitney Huynh for your beautiful pictures.

I would also like to thank Ryan Moore and his band, The Upside.

Thank you to all the food vendors: Kona Ice, Sweet Dee Links, 5 Finger Philly, Printice’s BBQ, and Southern Grace.

Thank you to AlignLife, Just 4 Running, and Rob Goldsmith and his team at FundRacers.

Thank you to Max’s grandmother, Debbie Hughes, for manning the foundation booth all night and asking for months how you could help. Thank you to Aunt Nancy Barnes and Max’s other grandmother, Pat Cowan, for helping Debs out.

Thank you so much to all the friends who volunteered. I took a bossy turn and you were all so forgiving. Thank you.

Thank you to all the virtual registrants.

Thank you to our awesome sponsors: Tony the Bearded Builder, the Self Family, Northside Hospital, The Suburban Stitch, The Kyle Pease Foundation, Jeyaram & Associates, GloWorm Golf, and Chick-Fil-A Moore Road.

Thank you to Mint Juleps for being there in more ways than one.

Thank you to Nikki Adair for creating the most precious graphics for this event and everything else I do.

Thank you to our friends from various seasons of our lives for showing up. It was overwhelming to see you all in one place. Thank you.

Thank you to the new faces who joined us. I had the pleasure of meeting many of you and hearing why you chose to attend. I’m incredibly grateful that you chose to spend your evening with us as we honored our boy.

Among the Stars

We were so touched when Max’s former school, Roberts Elementary, in Suwanee, reached out and said they planned to include his image in a mural.

Nearly two years ago, Max’s foundation donated to the special needs department at Roberts. We knew the funds were being put toward a revamp of the sensory room. It’s a therapeutic environment for students, a calm space for them to take intentional breaks during the day when they may feel overwhelmed. Among the new equipment purchased, they have a new hammock swing, LED sensory bubble tubes, fiber optic waterfall lights, adaptive lounge seating, and weighted blankets. Local artist (and a Roberts parent) Julia Davis, was recently hired to put the final touch on the room: a mural of outer space, with our Max featured as an astronaut among the stars.

It was an amazing gift to us for Roberts to include Max in this beautiful artwork. The staff at that school is unparalleled, truly, and the way they’ve remembered and honored our boy is such a comfort. Words cannot convey just how grateful we are for their love.

This mural was also especially emotional for me, as Max and I share a connection with the moon. It may sound trite, but I could tell you so many moon references between he and I, a few of which have occurred since he passed away. Our friends at Roberts were not aware of this, so I consider it not a coincidence, but one of those God things, or maybe a smile from Max; a reminder that, broken as my heart may be, the love and connection between my son and I is unchanged.

3rd Annual Friends FORE Max Janton Golf Classic Recap

We never wanted to cancel the golf tournament, but, like everything else in the time of COVID, it felt inevitable. We scheduled, canceled, rescheduled, canceled, hemmed, hawed, and, finally, Dan said we were doing it. He was incredibly enthusiastic and optimistic, and I was kind of like that, but mostly the exact opposite of that. Unfortunately, I can let worry get the best of me sometimes, which is one of the reasons I married Dan…he doesn’t worry much. He’s a big dreamer who subscribes to the “if you never try, you’ll never know” mantra. He’s my hype man.

We got to work just 19 days before the November 2nd tournament. We sent out e-mails, made calls, stayed up late, and kept checking items off a mile-long to-do list. We were super touched and blown away by the immediate response. Within days we had a full field of golfers for the tournament. We had generous sponsors, great food vendors, raffle donations, volunteers- it all fell into place, just as Dan knew it would. And yes, this is where I acknowledge that Dan was right, yadda, yadda.

For the third year in a row, the Friends FORE Max Janton Golf Classic had beautiful weather. It was a bit nippy, but no matter. Spirits were high and, just as with years past, there was a warm buzz in the air all day. All those faces, mostly familiar, some new, were smiling and there was a genuine exchange of love and remembrance amongst everyone. It felt that way to me, anyway. We all knew why we were there, and I felt like Max stayed front and center the entire time.

I’m especially grateful for days like this. Life has changed so much in the three years since Max left. Everything keeps moving forward, no matter how much we wish to go back. I desperately long for everyone to talk about Max all the time. To know him, remember him, say his name, cry with me, smile with me, recall his many funny stories. Max is threaded throughout my days, an essence I pray only grows stronger, and I so appreciate when others think of him, too, and share that with me. And I’m so thankful for days like the golf tournament, when we can all gather in his honor.

The tournament was a beautiful experience that our family will treasure. I’m so happy to share that we raised nearly $25,000 through the tournament and online donations. Max’s supporters never fail to amaze us.

Thank you so much to everyone who gave, in any capacity, to the Friends FORE Max Janton Golf Classic. We will be sure to tell each family we serve about our precious community who makes this foundation possible. It is so special for us to see Max’s life continue to touch others and gives us an amazing opportunity to show his brothers, not just tell them, how amazing their big brother is. Thank you, from the bottom of our hearts.

For Max

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.

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