Under the Umbrella: Raindancer Max

Meet Max, a SJGF Raindancer since 2019—shared in his mom Jennie’s words.

Max was born with a rare chromosome 18 variation. He also was born without eyes, so he is totally blind. In addition, he is very impacted by autism. We were told to take Max home from the NICU and make him comfortable. No life-saving measures were discussed. It was just known he would not live very long…

Fast forward to today — Max just turned 21 years old!!”

How Does Max Bring Joy?

“It’s the pure simplicity of what brings Max joy that brings us joy. Max lights up when he hears music, Elmo’s laugh, or his grandfather call his name. He is over the moon when his sister gives him a hug, or his brother-in-law repeats a favorite phrase. Max’s happiness occurs in the very smallest parts of everyday life. He lives in the moment… and that’s what brings us joy. Overall, it’s his smile."

Words that describe Max: Resilient (Mom's word), Complex (Dad's word), Extraordinary (Sister’s word)

How Does He Inspire & Make You Proud?

“Max’s ability to greet each day with joy and enthusiasm is incredibly inspirational.

His musical talent—playing the piano and accordion—brings many others joy.

His love of preschool knock-knock jokes makes others laugh.

Max has even inspired two of the professionals in his life to change career paths. After meeting Max, one went back to school to become a teacher of the visually impaired, and another changed her college major—she is now a specialist in autism and behavioral supports. He’s been quite inspirational and influential.”

What brings Max joy?

Rollercoasters.

Music of all kinds.

His sister and brother-in-law.

All things Sesame Street.

Hearing the ocean waves.

Feeling the beach wind.

And hearing his grandfather call his name—

“Heeeeey MAX!”

Max and His Sister Callie

"One of the first lessons learned from having Max as a sibling is that ‘fair doesn’t mean equal, fair means everyone’s needs are met.’

Callie grew up doing a great deal of waiting—waiting during endless medical appointments that weren’t for her, waiting for her brother to calm down so they could leave the house, waiting for her mom to come home from hospital stays with Max to have time with her… and so much more.

Because of all that, Callie has evolved into a compassionate adult who clearly values differences, celebrates diversity, and has a well-developed sense of patience.”

It is often said...if you want to know how to treat a child with special needs, look at their siblings. They will teach you.

And Callie is doing exactly that.

Every two to three months, Callie and her husband Aaron invite Max to their home for weekend sleepovers— which his mom says is “his most favorite activity in the entire world!!”

When he’s with them, Max spends time with their friends—bowling, going to Nats games, hanging by the pool or at backyard BBQs— and that’s where something even bigger is happening. Callie's friends now naturally step in to support Max—whether it’s guiding him to bowl or grabbing him a drink—without needing to be asked.

What started with one sister…

is now shaping an entire community.

“Because of their experience watching Callie, all of these young people now have a positive framework from which to build as they meet others in their lives who have significant disabilities or differences in general. I’m confident each of them will be open to ... including others with disabilities without hesitation—because they all had Callie (and Max) as a role model. Callie is causing a ripple effect of love and acceptance that is sure to extend without boundary.”

The Hard

“Max’s blindness is a challenge, but the impact of autism is the greatest challenge. Max can be physically aggressive, and his difficulty processing everything from basic sensory input to abstract concepts impacts daily life. His reduced mobility makes many community experiences difficult unless we use a wheelchair or our amazing SJGF (all terrain) Trackchair. (pictured)

Max’s completely erratic sleep schedule is probably the most challenging for us as parents. We, as older parents, are completely fatigued—in every sense of the word—every moment of every day.

We’ve experienced loss of friendships and social life because of Max’s needs. Family wants to understand, but sometimes they just can’t fully ‘get it,’ which impacts those relationships. The overwhelming feeling of being alone on this journey is hard. Being a forever caregiver is exhausting.

And thinking about the future… not knowing who will care for Max when we no longer can is terrifying. We have a plan—but plans don’t always go as expected.

Will there be enough support?

How will this impact Callie’s life?

We want her to live her own life—not have to carry this full time.”

BUT YET....

The Beautiful

“We find beauty and joy in the smallest, most simple parts of daily life that others might overlook.

Watching Max light up when his jack-in-the-box pops open.

Hearing his wide smile when his sister calls.

The quiet moment when he reaches out to hold his grandfather’s hand.

But the greatest joy is seeing how much joy Max brings to others. Watching his teachers light up.

A friend greet him with excitement. A child laugh and dance while Max plays Baby Shark on the piano. Max is making his mark on this world.

He is leaving behind a quiet footprint—helping others see the beauty and value in every living soul.

How Max Has Changed His Family

“Max has allowed our family to slow down and appreciate the smallest, simplest parts of life. His dad once said one of the best things about Max is that he didn’t miss a thing—he got to watch his development unfold in slow motion.

With typical children, you blink and a milestone passes. With Max, you witness every single step. Max has brought us closer as a family. We rely on each other more, communicate more clearly, and check in on one another more often. We are given daily opportunities to practice patience. And we are humbled to celebrate the smallest milestones— the things other families might overlook or take for granted.”

Lessons from Under the Umbrella

What It Means to Be a Raindancer Family

“Being a Raindancer family means we have a community in which we belong—unconditionally.

We are embraced in our lowest, darkest moments… and ESPECIALLY in our lowest, darkest moments.

It means we have the opportunity to give back to this amazing group, providing us with a greater sense of purpose. We, as families, offer help to each other on a regular basis. We learn to give—and to accept help. Accepting help can be very hard, but within this loving community of families just like ours, it’s easier. Most of all, it means we are not alone. Each family travels their unique journey alongside other families who just ‘get it.’”

What Others May Not Understand

Life for families like Max’s often means living in a constant state of stress—

a daily rhythm shaped by “fight or flight.”

As Jennie shares, they are “incredibly fatigued,”

stretched beyond their limits—emotionally, financially, and physically.

They are tired. And too often, the very systems meant to support them

leave them feeling defeated instead.

What Support Can Look Like

And even in the midst of all of that…there are moments of support that make all the difference.

As Jennie shares, support isn’t complicated—

it’s meaningful, consistent, and often found in the smallest acts:

“Support for our family looks like our daughter and her husband taking Max for a weekend sleepover to give us a break. It’s them calling Max just to say hello. It’s the SJGF track chair that has allowed us to take walks on local trails and at the beach—together. It’s the local food pantry saying yes when I asked if Max and I could volunteer there.

It’s the local music group including Max—and being patient with his vocal outbursts while playing music together. It’s coming over to initiate a conversation with us during an event, instead of just watching us sit in the corner.”

Lessons from Under the Umbrella: Support looks like showing up, including everyone, and being willing to step in- step up.

A Gift to the World

Max Has a Natural Connection to Music. No formal training—he just plays. Piano, accordion… he finds his way, and people feel it when they’re around him. It’s one of the clearest ways he connects with the world.

Jennie and Max telling Raindancer Gideon, who is also blind all about Max's cane- lit up for the holidays.

That same sense of connection shows up in his family, too.

Mom, Jennie is someone who often connect first to new moms in our private moms group—she is a trusted mentor to other moms who listens, understands, and helps them find their footing. Dad, Alan is always willing to jump in—hauling, delivering, helping, documenting moments behind the camera at SJGF events.

And together, they bring others with them—an army of friends who consistently show up, volunteer at our Adult Field Day, and step in, in honor of Max. For Max’s birthday this year, they brought all of that together for his special day.

They turned his celebration into a packing party for SJGF’s Hospital Program—friends gathered to pack Sunshine Boxes for kids in the hospital, choosing to give back in honor of Max.

Thank you for stepping under the umbrella and taking the time to get to know Max. From under the umbrella, with love. 💛