In July 2001, two days before their fifth wedding anniversary, high school sweethearts Michele and Kyle Burgess were running late for a prenatal ultrasound appointment.

In March, they surprised Michele’s father, Brent Boreman, while singing a slightly adapted version of the time-honored lyrics to “Happy Birthday”.

“Happy birthday dear…GRANDPA! Happy birthday to you!”

Brent and his wife Sue were filled with laughter and tears upon the surprise news and the impending arrival of the first grandchild after raising three daughters of their own.

Clutching their own blank VHS tape to capture the grainy black and white pixelated images of the 18 week ultrasound scan, Michele and Kyle passed an equally excited couple as they headed in the opposite direction on their way out to a sun-kissed parking lot.

The couple appeared overjoyed and somehow hugged and walked simultaneously while clutching their own VHS tape as they perhaps planned paint colors for the nursery and envisioned proudly telling close family and acquaintances about the healthy progress of their unborn son or daughter.

That was one of the last moments Michele and Kyle would feel those very same, innocent emotions.

In their late 20s, careers set and first home mortgaged, Michele and Kyle hurried into the darkened ultrasound room with nervous excitement and dreams about the future for their child. Minutes later, the talkative ultrasound technician became less and less carefree and transitioned to a focused quite.

“Let me check something again here,” she began.

“Is everything alright?” Shell asked. “Oh God, is everything alright?”

Tears began to fill her eyes.

“What’s wrong?” she uttered in fear and helplessness.

Anxiety flooded with emotion as the new parents were confronted with some of their darkest fears.

“I’m not seeing what I’m supposed to see at the base of the spine,” said the technician. “I need to call the Head of Obstetrics at McGee to talk to you more about this.”

Confusion and unwanted waves of questions ensued.

What is Spina Bifida?

We had planned everything so carefully. How could this have happened?

What will our child look like?

Will the baby live to full term or die during child birth?

Should we continue the pregnancy?

Why?

A more detailed ultrasound and amniocentesis was scheduled for the next day at McGee Women’s Hospital in Pittsburgh, and the heartbroken young couple prepared to shuffled back to the car in shock and disbelief.

“Do you want this back?” the technician said in the most caring voice she could muster, now unable to make eye contact as she ejected the still blank VHS tape.

It was the day a dream died.

Michele dreamed of motherhood and recreating a childhood for her baby similar to the remarkable one she enjoyed in a social atmosphere where laughter, church, and family meant everything. She had been an accomplished competitive gymnast, loved the thrill of mega roller coasters like the Magnum XL 2000 she rode at Cedar Point as a teen, and even led her high school marching band as a drum major during her senior year. She chaperoned youth group retreats to Camp Crestfield like the ones she attended while growing up–canoeing, biking, and playing in the traditional mud pit while growing spiritually with bible study and fellowship.

Kyle dreamt of an athletic experience for his child, one that mirrored the lessons he learned as a little league catcher, on the high school cross country course, and even in the demanding routines and formations practiced in marching band where he and Michele met. Scouting had also been a formative experience in his life, and thoughts of camping and fishing with a son were commonplace, too.

Would the baby ever know these experiences? Could parenthood ever be rewarding now? What dreams could become a reasonable reality?

As the family gathered that evening, brought to its knees literally and figuratively by the events of the day, new realities began to take shape.

“It’s the only truly sleepless night I can recall in my life,” Kyle said. “I just remember staring at the ceiling for hours on end. If I did drift into unconsciousness at all, I don’t think my mind ever stopped processing.”

“Why?”

As Michele and Kyle pieced together an understanding of what happened and leaned on family, faith, and medical advice to plan for the future, clarity slowly emerged.

“God only gives you what you can handle, and he knew just who to give this child to,” was a common remark from well-intentioned friends, but the soon-to-be-parents never saw God as the one who punished them with this burden. Conversely, they grew to appreciate not that God gave them what they could handle, but that He would always be there to help them handle what they were given.

A litany of prayers and cards, visitations and meals, from Sharon Community Presbyterian Church family pointed to God’s working through His believers as a means of shedding the peace and love of Christ in the Burgess home.

Furthermore, upon recommendation of a life-long family friend and hair stylist, Bonnie Lipke, Michele went to Barnes and Noble one night to purchase a book about parenting special needs children. As she browsed the aisles for the specific title, a young employee approached to offer his help.

Michele described the circumstances to the young man and was surprised to learn that he himself had special needs, and he offered a startlingly poignant insight:

“I wish I had a mother like you when I was growing up.”

Interactions like these helped Michele and Kyle grow in acceptance, faith, and hope for their unborn child’s future, and the decision to see the pregnancy through was no longer in doubt.

To date, knowing the baby’s gender had been secondary to fears of health and fate, but
now it became important to know.

Their first child was a boy.

At one point, and viral poem found its way into their email Inbox. It’s a popular one shared in Down Syndrome and Autism family support groups called “Welcome to Holland” by Emily Perl Kingsley.

Kingsley’s writing chronicles the parallel between having a special needs child and an unexpected vacation destination.

WELCOME TO HOLLAND

“I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.”

November 26, 2001 was a picturesque day with a vibrant autumnal sun washing the fast approaching winter landscape in Pittsburgh, and unto Michele and Kyle a child was given.

Initially overwhelmed by medical concerns and the known need for an impending neurosurgery to close the myelomeningocele defect on the baby’s lower back and to place a shunt to regulate cerebral spinal pressure, the new parents had no name for their son. They wouldn’t even be able to hold him for another day, and one of the first baby pictures taken featured Kyle hunching over his newborn son in a NICU isolette.

Italy wasn’t supposed to be like this.

Their son was baptized Kyle Brent Burgess, but the emerging clarity and confidence of his parents led them to feel the name didn’t quite fit their son’s look and personality. Unsure if changing a baby’s name months into its life was remotely reasonable, a pharmacy mistake sealed the deal after Kyle Brent was prescribed an antibiotic and dosed an amount for Kyle Henry, his dad.

A few forms and a fee later, their son’s name became official at last:

Harrison Brent Burgess

Enduring six surgeries before his third birthday and countless early intervention and physical therapy sessions, Harrison would emerge as a talkative, social boy who loved everything about growing up.

He enjoyed story times and crafts, Kindermusic and imaginative play, vacation bible schools and a special trip to Disney World to celebrate his fifth birthday. A creative mind coupled with fictional cartoons and Disney sitcoms led to an interest in shows and acting, and Harrison seemed to have attended every Wiggles Live show imaginable whenever the tour came to town.

Improvised costumes at home soon became refined costumes in church plays and acting camps like the ones offered at Sweetwater Center for the Arts in Sewickley, and the baby whose parents once feared his future was attacking it with wonder and perseverance.

And then came sled hockey.