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.


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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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September 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
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Sponsor: FIT4MOM
Telephone: 919-348-0472
Contact Name: Missy Currin
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Due to inclement weather, this event has been canceled. Children make treasured memories while increasing their knowledge of plants and animals. Ages 7-10. Register online.

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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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
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Sponsor: Mindful Families of Durham
Contact Name: Adam, Laura, Josh, Sumi
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Enjoy a street arts festival located in Durham’s historic city center that showcases 145 juried visual artists from across the U.S. and 600 performing artists from North Carolina. Food,...

Cost: $5 suggested donation

Where:
Downtown Durham
120 Morris St.
Durham, NC  27701
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Step back in time with our 19th-century costumed interpreters and watch the millstones at work grinding corn into meal. Tours are offered every 20 minutes beginning at 1 p.m. Reservations are...

Cost: $5 for Adults $4 for Seniors (ages 60 & over) $3 for Children (ages 7–16)* *Ch

Where:
Historic Yates Mill County Park
4620 Lake Wheeler Road
Raleigh, NC  27603
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Telephone: 919-856-6675

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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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Sunday, Sept. 16, 1–5 p.m. Learn how farmers harvested crops such as wheat before the invention of mechanized harvesters, try threshing wheat by hand and make a craft to take home!

Cost: free

Where:
Historic Yates Mill County Park
4620 Lake Wheeler Road
Raleigh, NC  27603
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Telephone: 919-856-6675

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Celebrate Latino culture with live bands, food trucks, dance performances, face painting, a pinata giveaway, crafts and more.

Cost: Free

Where:
Garner Performing Arts Center
125 Avery St.
Garner, NC  27529
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Take the family for live entertainment, food vendors, rides, hands-on activities, local talent performances, a car show, concerts and more. See website for hours.

Cost: Free

Where:
Downtown Clayton
E. Main St.
Clayton, NC  27520
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Sharon O'Donnell discusses her new book and tell humorous and poignant stories of having a child at 38.

Cost: Free

Where:
Barnes & Noble
760 S.E. Maynard Rd.
Cary, NC  27511
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PlayMakers Repertory Company presents Ken Ludwig's Sherwood: The Adventures of Robin Hood, a rip-roaring romp through Sherwood Forest with all the thrills and romance you could ever...

Cost: $12-$57

Where:
PlayMakers Repertory Company
120 Country Club Road
Chapel Hill, NC  27599
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Sponsor: PlayMakers Repertory Company
Telephone: 703-850-2282

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Children with special needs make a creamy vegetable curry. Ages 11 and older. Register online. Choose course #116721.

Cost: $19/resident, $24/nonresident

Where:
Herbert C. Young Community Center
101 Wilkinson Ave.
Cary, NC  27513
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PlayMakers Repertory Company presents Ken Ludwig's Sherwood: The Adventures of Robin Hood, a rip-roaring romp through Sherwood Forest with all the thrills and romance you could ever...

Cost: $12-$57

Where:
PlayMakers Repertory Company
120 Country Club Road
Chapel Hill, NC  27599
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Sponsor: PlayMakers Repertory Company
Telephone: 703-850-2282

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Read the story by John Parker, sing a spider song and pretend to be a spider before taking a short walk to mist spider webs and to see who’s home.  Ages 18 months-3 years with...

Cost: $2/child

Where:
Blue Jay Point County Park
3200 Pleasant Union Church Rd.
Raleigh, NC  27614
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PlayMakers Repertory Company presents Ken Ludwig's Sherwood: The Adventures of Robin Hood, a rip-roaring romp through Sherwood Forest with all the thrills and romance you could ever...

Cost: $12-$57

Where:
PlayMakers Repertory Company
120 Country Club Road
Chapel Hill, NC  27599
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Sponsor: PlayMakers Repertory Company
Telephone: 703-850-2282

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Wednesday, Sept. 19, 10–11 a.m.** All great inventions start out as merely ideas, and some even happen by accident. Hear invention stories, including the story of Oliver Evans, who invented the...

Cost: $4/child

Where:
Historic Yates Mill County Park
4620 Lake Wheeler Road
Raleigh, NC  27603
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Telephone: 919-856-6675
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Do you have what it takes to be a History Detective? Come to Yates Mill and find out! Solve puzzles, hunt for clues, and investigate the mystery of milling with real historical artifacts inside the...

Cost: $5 for Adults $4 for Seniors (ages 60 & over) $3 for Children (ages16 & under)

Where:
Historic Yates Mill County Park
4620 Lake Wheeler Road
Raleigh, NC  27603
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Telephone: 919-856-6675

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See Happy Dan perform magic, comedy and more.

Cost: $5/person

Where:
Renaissance Centre
405 Brooks St.
Wake Forest, NC  27587
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Join park staff for an informal fishing experience for the whole family. Take your own poles or borrow one from the park through the Tackle Loaner Program. Bait and basic instruction are...

Cost: Free

Where:
Lake Crabtree County Park
1400 Aviation Parkway
Morrisville, NC  27560
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Sponsor: Lake Crabtree County Park
Telephone: 919-460-3355
Contact Name: Carol Cunningham
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PlayMakers Repertory Company presents Ken Ludwig's Sherwood: The Adventures of Robin Hood, a rip-roaring romp through Sherwood Forest with all the thrills and romance you could ever...

Cost: $12-$57

Where:
PlayMakers Repertory Company
120 Country Club Road
Chapel Hill, NC  27599
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Sponsor: PlayMakers Repertory Company
Telephone: 703-850-2282

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Ages 1-5 and caregiver discover nature on a morning stroll. Register online. Choose course #117285.

Cost: $8/resident, $10/nonresident

Where:
Jack Smith Park
9725 Penny Rd.
Cary, NC  27606
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Telephone: 919-387-5980
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Get great bargains on gently used kids' clothing, toys, furniture, baby equip & more at the twice-yearly Kidz Stuff Consignment Sale. From strollers to jumpers, bikes to wipes warmers-if a...

Cost: Free

Where:
Hayes Barton Baptist Church
1800 Glenwood Ave
Raleigh, NC
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Celebrate Raleigh's creativity under the beautiful lights and cobblestone streets of City Market. Find locally-made goods and enjoy a night filled with music and entertainment with over 30...

Cost: Free

Where:
City Market
306 Parham St
Raleigh, NC  27601
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Sponsor: Raleigh Night Market
Contact Name: Sara Buxton
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Rodeos, a mule-pulling contest, arts and crafts, vendors, carnival rides, street performers, bluegrass shows and more are all part of Benson Mule Days. 

Cost: See website for fees

Where:
Downtown Benson
500 S. Market St.
Benson, NC  27504
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Website »

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PlayMakers Repertory Company presents Ken Ludwig's Sherwood: The Adventures of Robin Hood, a rip-roaring romp through Sherwood Forest with all the thrills and romance you could ever...

Cost: $12-$57

Where:
PlayMakers Repertory Company
120 Country Club Road
Chapel Hill, NC  27599
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Sponsor: PlayMakers Repertory Company
Telephone: 703-850-2282

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The autumnal equinox signals the beginning of fall. It is the point when there are exactly 12 hours of daylight and 12 hours of darkness at the equator. Mark the change of seasons by heading to the...

Cost: Free

Where:
Historic Yates Mill County Park
4620 Lake Wheeler Rd.
Raleigh, NC  27603
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Sponsor: Historic Yates Mill County Park
Telephone: 919-856-6675
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Rodeos, a mule-pulling contest, arts and crafts, vendors, carnival rides, street performers, bluegrass shows and more are all part of Benson Mule Days. 

Cost: See website for fees

Where:
Downtown Benson
500 S. Market St.
Benson, NC  27504
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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
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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
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More information

Get great bargains on gently used kids' clothing, toys, furniture, baby equip & more at the twice-yearly Kidz Stuff Consignment Sale. From strollers to jumpers, bikes to wipes warmers-if a...

Cost: Free

Where:
Hayes Barton Baptist Church
1800 Glenwood Ave
Raleigh, NC
View map »


Website »

More information

In celebration of the 151st anniversary of emancipation, MOJAA Performing Arts Company presents a theatrical experience that leads guests through Mordecai Historic Park to experience plantation...

Cost: $15/person

Where:
Mordecai Historic Park
1 Mimosa St.
Raleigh, NC  27604
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Friday, Sept. 21, 6:30–7:30 p.m. Go on an Owl Prowl and discover the kinds of owls that are found in the Piedmont, what they eat, where they live, and what they sound like. Dissect an owl...

Cost: $1/Person

Where:
Crowder County Park
4709 Ten-Ten Road
Apex, NC  27539
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Telephone: 919-662-2850
Contact Name: Ashley Martin
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Join us for Scrappy Hour at The Scrap Exchange! This month at Scrappy Hour we will be upcycling mason jars! Join us to create useful and decorative items that will spruce up your space! We will be...

Cost: $25

Where:
The Scrap Exchange
2050 Chapel Hill Road
Lakewood Avenue
Durham, NC  27707
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Telephone: 919-213-1278
Contact Name: Anna Graves
Website »

More information

PlayMakers Repertory Company presents Ken Ludwig's Sherwood: The Adventures of Robin Hood, a rip-roaring romp through Sherwood Forest with all the thrills and romance you could ever...

Cost: $12-$57

Where:
PlayMakers Repertory Company
120 Country Club Road
Chapel Hill, NC  27599
View map »


Sponsor: PlayMakers Repertory Company
Telephone: 703-850-2282

More information

Take the family to see a movie by the lake. Movie begins at dusk. 

Cost: Free

Where:
Bond Park
801 High House Rd.
Cary, NC
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Website »

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Americana powerhouse vocal trio Red Molly has graced stages from Denver to Denmark. The "Mollies" bring audiences to their feet with their gorgeous harmonies, crisp musicianship,...

Cost: $24

Where:
Garner Performing Arts Center
742 W Garner Road
Garner, NC  27529
View map »


Sponsor: Heartwood Montessori
Telephone: (919) 465-2113
Contact Name: Virginia McCollum
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More information

Show More...
Show Less...

The autumnal equinox signals the beginning of fall. It is the point when there are exactly 12 hours of daylight and 12 hours of darkness at the equator. Mark the change of seasons by heading to the...

Cost: Free

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


Sponsor: Historic Yates Mill County Park
Telephone: 919-856-6675
Website »

More information

Rodeos, a mule-pulling contest, arts and crafts, vendors, carnival rides, street performers, bluegrass shows and more are all part of Benson Mule Days. 

Cost: See website for fees

Where:
Downtown Benson
500 S. Market St.
Benson, NC  27504
View map »


Website »

More information

2018 marks 300 years since the notorious pirate Blackbeard roamed the Carolina coast and lost his life – and his head – in a fight with British soldiers. Learn more about the history of...

Cost: Free

Where:
North Carolina Museum of History
5 E. Edenton St.
Raleigh, NC  27601
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Website »

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Take part in nearly 100 exhibits and activities, including dragon boat races, cultural displays, games, health screenings, and stage performances. Enjoy a wide collection of ethnic foods...

Cost: $5 advance tickets; $8 at the door. Free for ages 12 and younger

Where:
Booth Amphitheatre
8003 Regency Pkwy.
Cary, NC  27518
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Website »

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Tinkergarten brings early childhood education to a park near you. In our classes, kids enjoy the freedom of independent exploration through well-designed play-based activities that lend from the...

Cost: Free

Where:
Hollow Rock Nature Park
692 Erwin Rd
Durham, NC  27707
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Sponsor: Ali Wolfe
Contact Name: Ali Wolfe
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Take the family for a day of activity and fellowship. There are two different courses for beginners and advanced competitors, and the whole family can take part as a team. Register online.

Cost: Free

Where:
Hope Valley Farms YMCA
4818 S. Roxboro St.
Durham , NC  27713
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Sponsor: Hope Valley Farms YMCA
Telephone: 919-401-9621
Contact Name: Kelly Johnson
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Embrace your inner rebel and celebrate the motorcycle lifestyle with family-friendly activities ranging from stunt shows and specialty rides to live music and local vendors. See website for hours.

Cost: $10 for ages 13 and older. Free for ages 12 and younger.

Where:
Raleigh Convention Center
500 S. Salisbury St
Raleigh, NC  27601
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Website »

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Project Palooza benefits Project Enlightenment in Wake County and celebrates Project Enlightenment's service to children, families and educators. Enjoy games, crafts,...

Cost: Free

Where:
Project Enlightenment
501 S. Boylan Ave.
Raleigh, NC  27603
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Sponsor: Project Enlightenment
Telephone: 614-783-2507
Contact Name: Caitlin Howison
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Durham Public Schools Hub Farm hosts its biannual open house. This free event will feature music, food catered by DPS students, boating, tree climbing, tours, beekeeping demos, and is kid- and...

Cost: Free for general admission

Where:
The Hub Farm
117 Milton Rd.
Durham, NC  27712
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Children's booksellers read their favorite picture books. All ages.

Cost: Free

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

More information

Discover how beavers live, eat and play in their watery world. Search for beaver signs around the pond. Ages 3-5 with parent. Advance registration required.  

Cost: $3/child

Where:
Wilkerson Nature Preserve
5229 Awls Haven Dr.
Raleigh, NC  27614
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Sponsor: City of Raleigh Parks, Recreation and Cultural Resources
Telephone: 919-996-6764
Contact Name: Wilkerson staff
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Taste the world while enjoying free music and dance entertainment, kids games and raffle prizes. Enjoy authentic foods from a dozen countries, live entertainment, games, inflatables and more.

Cost: Free

Where:
J. Ashley Wall Towne Square
Cyprus and Third Streets
Wendell, NC  27591
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Website »

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Want to get inside Historic Yates Mill? Join us for a half-hour tour (starting at 1 p.m., 1:30 p.m., 2 p.m., 2:30 p.m. or 3 p.m.) to view the main power drive and milling machinery while exploring...

Cost: $5 for Adults $4 for Seniors (ages 60 & over) $3 for Children (ages 7–16)* *Ch

Where:
Historic Yates Mill County Park
4620 Lake Wheeler Road
Raleigh, NC  27603
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Telephone: 919-856-6675

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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
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Enjoy live music in the Stephenson Amphitheater and Rose Garden. Kids can play games and make crafts in the Kids Zone. Gates open at 1:30 p.m.

Cost: $10 advance tickets; $15 at the door

Where:
Raleigh Little Theatre
301 Pogue St.
Raleigh, NC  27607
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Website »

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Get great bargains on gently used kids' clothing, toys, furniture, baby equip & more at the twice-yearly Kidz Stuff Consignment Sale. From strollers to jumpers, bikes to wipes warmers-if a...

Cost: Free

Where:
Hayes Barton Baptist Church
1800 Glenwood Ave
Raleigh, NC
View map »


Website »

More information

In celebration of the 151st anniversary of emancipation, MOJAA Performing Arts Company presents a theatrical experience that leads guests through Mordecai Historic Park to experience plantation...

Cost: $15/person

Where:
Mordecai Historic Park
1 Mimosa St.
Raleigh, NC  27604
View map »


Website »

More information

Many animals are active around sunset or shortly after. Take a walk with a park naturalist to explore the woods and fields at this special time. Look for deer, coyotes and owls. All ages....

Cost: $2

Where:
Wilkerson Nature Preserve
5229 Awls Haven Dr.
Raleigh, NC  27614
View map »


Sponsor: City of Raleigh Parks, Recreation and Cultural Resources
Telephone: 919-996-6764
Contact Name: Wilkerson Nature Preserve
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More information

PlayMakers Repertory Company presents Ken Ludwig's Sherwood: The Adventures of Robin Hood, a rip-roaring romp through Sherwood Forest with all the thrills and romance you could ever...

Cost: $12-$57

Where:
PlayMakers Repertory Company
120 Country Club Road
Chapel Hill, NC  27599
View map »


Sponsor: PlayMakers Repertory Company
Telephone: 703-850-2282

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