The Waterslide Less Traveled

Mom reflects on how far her son has come since being diagnosed with rare genetic syndrome in addition to having autism.


Published:

When he was 4-years-old, David McGlohon was diagnosed with Bardet-Biedl Syndrome. David also has autism.

Photos courtesy of Maxie McGlohon

Myrtle Beach, South Carolina and the Embassy Suites at Kingston Plantation will always hold bittersweet memories for our family. Even before we were married, my husband and I would attend medical and dental meetings at the beautiful oceanfront oasis, enjoying romantic candlelight dinners, soaking up every precious second of our time away from the purse strings of life.

After marriage, we introduced our beautiful baby boy, David, to our seaside retreat. He attended every meeting, quickly showing his affinity for the sand between his toes. It was just after his fourth birthday that our world would be forever changed. It was a beautiful bright sunny day in mid-May. We were packing our bags to attend the annual North Carolina Dental Society Meeting in Myrtle Beach, just as we had done every year. We received a call from the geneticist at Duke Children's Hospital stating that our son’s test results were finally back, and she wanted to set up an appointment in a few weeks to go over the results. Of course, no parent wants to wait weeks to hear the results of such important test results, so we told her we were on the way. Our minds racing with angst and anticipation, we jumped in the car and rushed to Duke Children's Hospital.

I have dealt with a lot of devastating news and events in my life, such as the loss of both of my parents, but nothing will ever compare to the heartache that we felt that day. We were told that our precious 4-year-old son had a rare genetic syndrome called Bardet-Biedl Syndrome, or BBS. This syndrome affects about 1 in 150,000 people in the world. The geneticist said he would most likely be blind by the time he was a teenager and may end up needing a kidney transplant. She offered very little hope and sent us on our way.

Feeling like we were blindsided by a freight train and barely able to see through our tears, we decided to continue on to our conference at Myrtle Beach. I probably slept an hour that first night. When I awoke, I remember asking my husband if it had all been just a horrible dream.

We took David down to the baby pool that day, letting him splash and play, while our minds rambled with frantic questions about his future. Would he be blind one day? Would he succumb to kidney failure? Would he be able to play like other children? Would he ever even be able to do something as simple as independently sliding down that big water slide at the splash park? Would he be able to attend college? The list was endless. As we watched him in that baby pool, we were overcome with grief.

David slides down the waterslide at Kingston Plantation.


Eight years later, we are back at Kingston Plantation at our yearly dental conference. As I have watched David these past few days, I am in awe of how far this awesome little boy has progressed since that day at the baby pool. If you had watched him by the splash park, you would have most likely thought he was just like any other kid, enjoying life. He was skipping, splashing and sliding independently down the waterslides without a care in the world. Getting to this point has been no small feat. You see, children with BBS and autism do not get to take the easy road in life. Almost everything is a challenge for them. Whether it be writing their name, going to the bathroom or even siding down a waterslide. David’s progress is due largely in part to our village of great teachers, teacher’s assistants, speech therapists, occupational therapists, ABA therapists and caring sitters who all have played such important roles in his life.

We have also reflected on how far we have come as parents since that devastating day eight years ago when we first received that grim diagnosis. Back then, we were alone, depressed with basically no hope for David’s future. But through research, we found the Marshfield Clinic and the BBS Center of Excellence in Wisconsin. There we received the guidance and professional care and support that we desperately needed. Now I am traveling to Washington D.C. as a rare disease advocate, speaking with our politicians on behalf of rare disease patients. I am attending rare disease conferences and lobbying for David and others who do not have a voice. My husband and I are moderating a telephone support group for BBS parents that reaches people on every continent! That is huge for two people who were knocked down with grief eight years ago.    

David’s road and our road with him will continue to be the road less traveled. We will continue to celebrate his victories, however big or small, along the way. We will continue to live every day with hope for his future.

In the words of Robert Frost, “Two roads diverged in a wood and I took the one less traveled by, and that has made all the difference.”  


​Maxie McGlohon, MSN, RN, FNP, LNC, blogs on Facebook about her son's autism and living with BBS. For more information, visit her website, Hanging 11 with David.

 

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November 2018

Run Club meets every Sunday at 8 a.m. in Midtown Raleigh or Wake Forest. Stroller friendly; children invited. 

Cost: $10/run or $100/annual pass

Where:
Optimist Park Community Center/Greenways
5900 Whittier Drive
Raleigh, NC  27609
View map »


Sponsor: FIT4MOM
Telephone: 919-348-0472
Contact Name: Missy Currin
Website »

More information

RJR hosts the Sirens from Savannah, Georgia, for a sanctioned junior bout, followed by an adult scrimmage. Doors open at 9:30 a.m. Allstar bout begins at 10...

Cost: $7 at the door. Free for kids 3 and younger

Where:
United Skates of America
2901 Trawick Rd.
Raleigh, NC  27604
View map »


Sponsor: RJR
Telephone: 919-438-6066
Contact Name: Maureen Fennell
Website »

More information

Come for a tour and try out a Music or Creative Movement class. Any child who will be preschool age (ages 2-transitional kindergarten) for the 2019-20 school year is invited to participate in...

Cost: Free

Where:
Saint Raphael Preschool
5801 Falls of the Neuse Rd.
Raleigh, NC  27609
View map »


Sponsor: Saint Raphael Preschool
Telephone: 919-865-5725
Contact Name: Nora Duran
Website »

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Take part in a class that teaches individualized ways to foster motor development for your child. Learn about tummy time alternatives, best positions for your baby, how to help your child learn to...

Cost: $18

Where:
Open Arts
1222 Copeland Oaks Dr.
Morrisville, NC  27560
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Sponsor: Babies On The MOVE
Contact Name: Rebecca Quinones
Website »

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Join Mindful Families of Durham, a Buddhist-inspired spiritual community that supports area parents, caregivers, and their children in the practice of mindfulness and the understanding of the...

Cost: Free

Where:
Erwin Road
Durham, NC  27705
View map »


Sponsor: Mindful Families of Durham
Contact Name: Adam, Laura, Josh, Sumi
Website »

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Take part in a class that teaches individualized ways to foster motor development for your child. Learn about carry positions, best positions for your baby, how to help your child learn to crawl,...

Cost: $18

Where:
Open Arts
1222 Copeland Oaks Dr
Morrisville, NC  27560
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Sponsor: Babies On The MOVE
Contact Name: Rebecca Quinones
Website »

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The Durham Art Walk Holiday Market is a festive fine arts and crafts event that kicks off the holiday season in downtown Durham. The Holiday Market invites art lovers of all ages to experience...

Cost: Free

Where:
Durham Arts Council
120 Morris Street
Durham, NC  27701
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Sponsor: Durham Arts Council
Telephone: 919-560-2720
Contact Name: Margaret DeMott
Website »

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Join NC State Parks, Recreation and Tourism students and discover how the world around you transitions from fall to winter. From meeting a live snake to creating a fall craft, participants will...

Cost: Free

Where:
Harris Lake County Park
2112 County Park Dr.
New Hill, NC  27562
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Sponsor: Harris Lake County Park
Telephone: 919-387-4342
Contact Name: Joanne St. Clair
Website »

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Visit the display table to learn about this fall tradition and make a corn husk doll to take home. All ages.

Cost: Free

Where:
Historic Yates Mill County Park
4620 Lake Wheeler Rd.
Raleigh, NC  27603
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Telephone: 919-856-6675
Website »

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Tour the farm, spend time with farmers who care about the environment and meet friendly animals. Tickets must be purchased online; the farm is not open for drop-ins.

Cost: $10/person

Where:
Hux Family Farm
1923 Shaw Rd.
Durham, NC  27704
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Website »

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Join harpist extraordinaire Laura Byrne as she and several of her students, Kate Twiss (8th grade) and Jocelyn Bowns (10th grade), serenade audiences with beautiful...

Cost: Free

Where:
Sarah P. Duke Gardens - Kirby Horton Hall
420 Anderson St
Durham, NC  27708
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Sponsor: Mallarme Chamber Players
Telephone: 919-560-2788
Contact Name: Suzanne Rousso
Website »

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Walk back in time with a park naturalist to learn about the original Americans. Discover edible and medicinal plants. Play games like Native American children and make a fun craft. All ages with...

Cost: $1/person

Where:
Crowder County Park
4709 Ten-Ten Rd.
Apex, NC  27539
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Telephone: 919-662-2850
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Participants develop their naturalist skills and understanding of local nature. Ages 5-8 with parent. Register online. Choose course #117109.

Cost: $8/resident, $10/nonresident

Where:
Stevens Nature Center/Hemlock Bluffs
2616 Kildaire Farm Rd.
Cary, NC
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Telephone: 919-387-5980
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Enjoy food, inflatables, games and prizes (for adults and kids), a silent auction and a haunted house.  Cost: $5 ($3 for kids 6 and younger) Concessions and the haunted house...

Cost: $5 ($3 for kids 6 and younger)

Where:
The School for Creative Studies
5001 Red Mill Road
Durham, NC  27704
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Sponsor: The School for Creative Studies PTSA
Telephone: 919-560-3535
Contact Name: School for Creative Studies PTSA
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The Chamber Orchestra of the Triangle presents a concert featuring UNC’s Carolina Choir. Concert highlights include Samuel Barber’s Prayers of Kierkegaard, Nino Rota’s Bassoon...

Cost: $30/adult, free for children

Where:
Carolina Theatre of Durham
309 W. Morgan St.
Durham, NC  27701
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Website »

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Search for owls, salamanders and more. Equipment provided. Ages 10-13. Register online. Choose course #117111.

Cost: $8/resident, $10/nonresident

Where:
Stevens Nature Center/Hemlock Bluffs
2616 Kildaire Farm Rd.
Raleigh, NC
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Telephone: 919-387-5980
Website »

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Young adults with developmental disabilities enjoy a book club featuring "Harry Potter and the Chamber of Secrets."  The group meets most Sundays at 4:45 p.m.

Cost: Free

Where:
Quail Ridge Books
4209-100 Lassiter Mill Rd.
Raleigh, NC  27609
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Website »

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Come for a tour and try out a Music or Creative Movement class. Any child who will be preschool age (ages 2-transitional kindergarten) for the 2019-20 school year is invited to participate in...

Cost: Free

Where:
Saint Raphael Preschool
5801 Falls of the Neuse Rd.
Raleigh, NC  27609
View map »


Sponsor: Saint Raphael Preschool
Telephone: 919-865-5725
Contact Name: Nora Duran
Website »

More information

Logs provide great habitat for many animals. Join us as we read Wendy Pfeffer's A Log's Life, explore a real log and create a log craft to take home. For ages 1-6 with accompanying adult. Meet at...

Cost: $4 per child

Where:
Harris Lake County Park
2112 County Park Dr.
New Hill, NC  27562
View map »


Sponsor: Harris Lake County Park
Telephone: 919-387-4342
Contact Name: Joanne St. Clair
Website »

More information

Children with disabilities learn the basics of meal preparation, cooking and clean-up with easy-to-follow recipes. Ages 11 and older. Register online. Choose course #116723.

Cost: $19/resident, $24/nonresident

Where:
Herbert C. Young Community Center
101 Wilkinson Ave.
Cary, NC  27513
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Website »

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Children with special needs make gyros, a popular pita wrap. Ages 11 and older. Register online. Choose course #116723.

Cost: $19/resident, $24/nonresident

Where:
Herbert C. Young Community Center
101 Wilkinson Ave.
Cary, NC  27513
View map »


Website »

More information

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Come for a tour and try out a Music or Creative Movement class. Any child who will be preschool age (ages 2-transitional kindergarten) for the 2019-20 school year is invited to participate in...

Cost: Free

Where:
Saint Raphael Preschool
5801 Falls of the Neuse Rd.
Raleigh, NC  27609
View map »


Sponsor: Saint Raphael Preschool
Telephone: 919-865-5725
Contact Name: Nora Duran
Website »

More information

Learn Sarah Hale's story and make fun Thanksgiving-themed crafts. All ages with adult. Register online. 

Cost: Free

Where:
Historic Yates Mill County Park
4620 Lake Wheeler Rd.
Raleigh, NC  27603
View map »


Telephone: 919-856-6675
Website »

More information

Ages 11 and older with special needs learn basic outdoor survival skills. Register online. Choose course #116958.

Cost: $10/resident, $13/nonresident

Where:
Bond Park
801 High House Rd.
Cary, NC  27513
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Telephone: 919-387-5980
Website »

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Ages 6-10 enjoy art and yoga. Register online. 

Cost: $45/child

Where:
Little Guru Kids Yoga and Creative Arts
215 Glenwood Avenue
Suite A
Raleigh, NC  27603
View map »


Sponsor: Little Guru Kids Yoga
Telephone: 919-720-4921
Contact Name: Jen Fisher
Website »

More information

Come for a tour and try out a Music or Creative Movement class. Any child who will be preschool age (ages 2-transitional kindergarten) for the 2019-20 school year is invited to participate in...

Cost: Free

Where:
Saint Raphael Preschool
5801 Falls of the Neuse Rd.
Raleigh, NC  27609
View map »


Sponsor: Saint Raphael Preschool
Telephone: 919-865-5725
Contact Name: Nora Duran
Website »

More information

See Happy Dan perform magic, comedy and more.

Cost: $5/person

Where:
Renaissance Centre
405 Brooks St.
Wake Forest, NC  27587
View map »


Website »

More information

Learn about the first Thanksgiving. Play 17th-century games, learn to talk like a pilgrim and create a first Thanksgiving food collage to take home. Ages 7 and older. Registration required.

Cost: $6/child

Where:
Historic Yates Mill County Park
4620 Lake Wheeler Rd.
Raleigh, NC  27603
View map »


Telephone: 919-856-6675
Website »

More information

A playful elf, sent by Santa to confirm the naughty and nice list, stumbles upon the best place to find holiday cheer—the North Carolina Symphony! This family fun concert includes music from...

Cost: $28/person

Where:
Meymandi Concert Hall
2 E. South St.
Raleigh, NC  27601
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Website »

More information

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Take part in a 5K Thanksgiving morning. Proceeds benefit the Wake County Boys & Girls Clubs. Register online. 

Cost: $15-$30

Where:
Downtown Wake Forest
, NC  27587


Website »

More information

Competitive or Recreational 5K at Garner's White Deer Park Thanksgiving morning.  1 Mile option also available Register at https://fsseries.com/event/turkey-day-5k/register/

Cost: $20 - $30

Where:
White Deer Park
2400 Aversboro Road
Garner, NC  27529
View map »


Sponsor: TeddyRox Foundation
Telephone: 919-608-5658
Contact Name: Nancy Cawthon
Website »

More information

Come for a tour and try out a Music or Creative Movement class. Any child who will be preschool age (ages 2-transitional kindergarten) for the 2019-20 school year is invited to participate in...

Cost: Free

Where:
Saint Raphael Preschool
5801 Falls of the Neuse Rd.
Raleigh, NC  27609
View map »


Sponsor: Saint Raphael Preschool
Telephone: 919-865-5725
Contact Name: Nora Duran
Website »

More information

Take the family to enjoy the animated movie at Marbles IMAX. Playing November 22-25 only.  See the website for show times and to purchase tickets.

Cost: See website for fees

Where:
Marbles Kids Museum
201 E. Hargett St.
Raleigh, NC  27601
View map »


Website »

More information

Show More...
Show Less...

Ages 6-10 enjoy art and yoga. Register online. 

Cost: $45/child

Where:
Little Guru Kids Yoga and Creative Arts
215 Glenwood Avenue
Suite A
Raleigh, NC  27603
View map »


Sponsor: Little Guru Kids Yoga
Telephone: 919-720-4921
Contact Name: Jen Fisher
Website »

More information

Come for a tour and try out a Music or Creative Movement class. Any child who will be preschool age (ages 2-transitional kindergarten) for the 2019-20 school year is invited to participate in...

Cost: Free

Where:
Saint Raphael Preschool
5801 Falls of the Neuse Rd.
Raleigh, NC  27609
View map »


Sponsor: Saint Raphael Preschool
Telephone: 919-865-5725
Contact Name: Nora Duran
Website »

More information

Bring the family out for a fall wagon ride along the back roads of the park to enjoy the fall colors and the beauty of Harris Lake County Park.  Staff will interpret the natural and historical...

Cost: $1 per person

Where:
Harris Lake County Park
2112 County Park Dr.
New Hill, NC  27562
View map »


Sponsor: Harris Lake County Park
Telephone: 919-387-4342
Contact Name: Joanne St. Clair
Website »

More information

The original television classic comes to life! The beloved TV classic soars off the screen and onto the stage this holiday season. See favorite characters Santa and Mrs. Claus, Hermey...

Cost: $15-$50

Where:
Duke Energy Center for the Performing Arts
2 E. South St.
Raleigh, NC  27601
View map »


Sponsor: Duke Energy Center for the Performing Arts
Telephone: 919-886-4591
Contact Name: Box Office
Website »

More information

This class is a chance for adventurous women to get together for a fun-filled workshop where we explore the basics of aerial silks. No need for a background in aerial yoga, this is a workshop...

Cost: $25

Where:
Cary Hot Yoga
952 Kildaire Farm Rd.
Cary, NC  27511
View map »


Sponsor: Cary Hot Yoga
Telephone: 188-858-79530
Contact Name: hoa bui
Website »

More information

Gather the family together for this fun-filled, heartwarming spectacular featuring seasonal favorites plus a sing-a-long, falling snow, and a chorus line of dancing Santas. Visit Santa...

Cost: $35-$65

Where:
Meymandi Concert Hall
2 E. South St.
Raleigh, NC  27601
View map »


Website »

More information

Take the family to enjoy the animated movie at Marbles IMAX. Playing November 22-25 only.  See the website for show times and to purchase tickets.

Cost: See website for fees

Where:
Marbles Kids Museum
201 E. Hargett St.
Raleigh, NC  27601
View map »


Website »

More information

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A Perch, a local coworking space is pleased to announce their annual indoor/outdoor Holiday Handmade Pop-up. The market will showcase a diverse range of work by local makers including,...

Cost: Free

Where:
Perch Studios
106 S. Greensboro St.
Suite E
Carrboro, NC  27510
View map »


Sponsor: Perch Coworking
Telephone: 919 260 5313
Contact Name: Betsey Elbogen

More information

Come for a tour and try out a Music or Creative Movement class. Any child who will be preschool age (ages 2-transitional kindergarten) for the 2019-20 school year is invited to participate in...

Cost: Free

Where:
Saint Raphael Preschool
5801 Falls of the Neuse Rd.
Raleigh, NC  27609
View map »


Sponsor: Saint Raphael Preschool
Telephone: 919-865-5725
Contact Name: Nora Duran
Website »

More information

The beloved TV classic soars off the screen and onto the stage this holiday season. See favorite characters Santa and Mrs. Claus, Hermey the Elf, Bumble the Abominable Snow Monster,...

Cost: $15-$50

Where:
Duke Energy Center for the Performing Arts
2 E. South St.
Raleigh, NC  27601
View map »


Sponsor: Duke Energy Center for the Performing Arts
Telephone: 919-886-4591
Contact Name: Box Office
Website »

More information

Ages 8 and older 8 learn aerial yoga poses. Great opportunity to have fun for the entire family. No prior aerial yoga experience is required.  24 Hour Pre-registration: $40 one parent+one...

Cost: $40 child+adult or $20/child $25/adult

Where:
Cary Hot Yoga
952 Kildaire Farm Rd.
Cary, NC  27511
View map »


Sponsor: Cary Hot Yoga
Telephone: 188-858-79530
Contact Name: hoa bui
Website »

More information

Celebrate the holiday season with goats, farm animals, a new hay ride and tractor ride, holiday treats and a Christmas Market. Santa will be at the farm on all weekends giving you the perfect...

Cost: $13.50/person

Where:
Spring Haven Farm
5306 Homer Ruffin Rd.
Chapel Hill , NC  27516
View map »


Sponsor: Spring Haven Farm
Telephone: 919.407.1806
Contact Name: Andrew Crihfield
Website »

More information

Take part in a fun and playful aerial yoga and movement class for parents and children age 5 and older. Stretch, move, play and learn aerial yoga poses. Breathing techniques will be taught to...

Cost: $35 child and adult pair, or $15/child and $25/adult

Where:
Cary Hot Yoga
952 Kildaire Farm Rd.
Cary, NC  27511
View map »


Sponsor: Cary Hot Yoga
Telephone: 888-587-9530
Contact Name: hoa bui
Website »

More information

Explore the historic heart of downtown Raleigh on a walking tour of Fayetteville Street. Tours highlight the people, places, architecture and political movements that have shaped...

Cost: Adults (18+) $10; Youth (7-17) $4; Children (6 & under) Free.

Where:
City of Raleigh Museum
220 Fayetteville St.
Raleigh, NC  27601
View map »


Website »

More information

The beloved TV classic soars off the screen and onto the stage this holiday season. See favorite characters Santa and Mrs. Claus, Hermey the Elf, Bumble the Abominable Snow Monster,...

Cost: $15-$50

Where:
Duke Energy Center for the Performing Arts
2 E. South St.
Raleigh, NC  27601
View map »


Sponsor: Duke Energy Center for the Performing Arts
Telephone: 919-886-4591
Contact Name: Box Office
Website »

More information

Gather the family together for this fun-filled, heartwarming spectacular featuring seasonal favorites plus a sing-a-long, falling snow, and a chorus line of dancing Santas. Visit Santa...

Cost: $35-$65

Where:
Meymandi Concert Hall
2 E. South St.
Raleigh, NC  27601
View map »


Website »

More information

Joshual Lozoff combines amazing illusions with mental feats that explore the possibilities of the human mind. All ages. Purchase tickets online.

Cost: $20/person

Where:
The ArtsCenter
300-G East Main St.
Carrboro, NC  27510
View map »


Sponsor: The ArtsCenter
Telephone: 919-929-2787
Contact Name: Patrick Phelps-Mckeown     
Website »

More information

Take the family to enjoy the animated movie at Marbles IMAX. Playing November 22-25 only.  See the website for show times and to purchase tickets.

Cost: See website for fees

Where:
Marbles Kids Museum
201 E. Hargett St.
Raleigh, NC  27601
View map »


Website »

More information

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The 2018-19 Education Guide offers 678 education resources in the Triangle, including area preschools, private schools, public school systems, charter schools, boarding schools, academic resources and an Exceptional Child special section.

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Our Triangle Go-To Guide connects you to family fun resources across the Triangle. Plus, find out who our 2018 Readers' Favorites are.