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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Wear your favorite holiday attire and dine with Santa Claus. Enjoy a delicious brunch, stories and crafts, and take pictures with the jolly man from the North Pole. 

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Joyner Park Community Center
701 Harris Rd.
Wake Forest, NC  27587
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Participants develop their naturalist skills and understanding of local nature. Ages 5-8 with parent. Register online. 

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Stevens Nature Center/Hemlock Bluffs
2616 Kildaire Farm Rd.
Cary, NC
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Girls ages 5-12 take their favorite doll and have a creative time together preparing for the holidays. Register by emailing llpolkhouse2@gmail.com.

Cost: $22/attendee, $20/sister

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Historic Polk House
537 N. Blount St.
Raleigh, NC  27604
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Telephone: 919-676-6368
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See dancers and a guitarist from Flamenco Carolina perform a Spanish style of music and dance.

Cost: $3/person

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Century Center
100 N. Greensboro St.
Carrboro, NC  27510
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Ebeneezer Scrooge was visited by three spirits, but what about the next Christmas? With heartwarming excitement, discover how the Cratchit family has fared in the year that has passed since old...

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Wake Forest Renaissance Centre
405 S. Brooks St.
Wake Forest, NC  27587
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The Durham Medical Orchestra performs with special guest Joseph Alessi, principal trombone, New York Philharmonic.

Cost: Free

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Baldwin Auditorium, Duke University
1336 Campus Dr.
Durham, NC  27705
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As a Christmas gift to our community and surrounding area, Wake Forest Presbyterian Church delivers the true Christmas story in a stirring virtual “walk” through Bethlehem to the stable...

Cost: Free

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Wake Forest Presbyterian Church
12605 Capital Blvd
Wake Forest, NC  27587
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Sponsor: Wake Forest Presbyterian Church
Telephone: 919-556-7777
Contact Name: Meghan Reynolds
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Fun for the entire family, enjoy this wonderful, witty retelling of a classic fairy-tale. With a score consisting of well-known pop songs, follow Snow White and her Seven Dwarves as they try to...

Cost: $10-$60/person

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Duke Energy Center for the Performing Arts
2 East South Street
Raleigh, NC  27601
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Telephone: 919-996-8700
Contact Name: Blake Jones
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The choir presents its 49th performance on Handel's "Messiah."

Cost: Free

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White Plains United Methodist Church
313 S.E. Maynard Rd.
Cary, NC  27513
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The first day of winter is right around the corner! Help us welcome the season by making a snow globe to take home. We will bring the materials if you bring the imagination! For all ages (adult...

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Crowder County Park
4709 Ten-Ten Rd
Apex, NC  27529
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Children will enjoy this wonderful book written by John Denver reminding us not to forget about the wildlife this holiday season. We will make a craft then take a walk to look for our wildlife...

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Harris Lake County Park
2112 County Park Dr.
New Hill, NC  27562
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Join RTOOT as it performs the music of great Italian composers as well as beloved Christmas classics. Purchase tickets online. 

Cost: $9/adult, $3 ages 12 and younger

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Cary Arts Center
101 Dry Ave.
Cary, NC  27511
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Dan the Animal Man brings some of his animals from his vast collection to entertain all ages. 

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Century Center
100 N. Greensboro St.
Carrboro, NC  27510
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Help find candy canes hidden in Bond Park before the Grinch turns them green. Ages 6-12. Registration required online. Choose course #127871. 

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Bond Park
801 High House Rd.
Cary, NC
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Embark on a wild ride with favorite Disney characters Mickey, Minnie, Goofy and many others in this fun-filled getaway featuring unexpected hijinks and character interaction. Purchase tickets...

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PNC Arena
1400 Edwards Mill Rd.
Raleigh, NC  27607
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Ages 1-5 and caregiver delight in the discoveries of nature. 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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Get into the holiday spirit by decorating cooking, making a craft and enjoying a holiday children's show.

Cost: Free

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Century Center
100 N. Greensboro St.
Carrboro, NC  27510
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The Wake Forest Abilities Choir will present an evening of holiday music under the direction of director.

Cost: Free

Where:
Wake Forest Renaissance Centre
405 S. Brooks St.
Wake Forest, NC  27587
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Embark on a wild ride with favorite Disney characters Mickey, Minnie, Goofy and many others in this fun-filled getaway featuring unexpected hijinks and character interaction. Purchase tickets...

Cost: $15 and up

Where:
PNC Arena
1400 Edwards Mill Rd.
Raleigh, NC  27607
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Celebrate pecans at the State Farmers Market.

Cost: Free

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State Farmers Market
1201 Agriculture St.
Raleigh, NC  27603
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Join us to learn about how Habitat for Humanity helps build houses, hear a Christmas tale and then build a graham cracker house of your own. Call to, 919-245-2532. Best for ages 4 and up with a...

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Orange County Main Library
137 W Margaret Ln
Hillsborough, NC  27278
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Sponsor: Orange County Public Library
Telephone: 919-245-2539
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Is there a man in the moon, and is the moon made of cheese? Sip on some hot cocoa and listen to some of the stories people have told about the moon and find out if there is truth to them. Then...

Cost: For all ages; FREE. Registration is required for everyone, and adult accompanime

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Crowder County Park
4709 Ten-Ten Rd
Apex, NC  27529
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Telephone: 919-662-2850
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Discover family traditions from North Carolina and around the globe. Create art, enjoy free access to Frida Kahlo, Diego Rivera, and Mexican Modernism, and have a special visit with Santa.

Cost: Free

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North Carolina Museum of Art East Building and Museum Plaza
Raleigh, NC


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Cost: Free

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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
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Kids ages 5-12 enjoy indoor activities while parents enjoy a night out. Register online. 

Cost: $30/resident, $45/nonresident

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Halle Cultural Arts Center
237 N. Salem St.
Apex, NC  27502
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Middle Creek Community Center
125 Middle Creek Ave.
Apex, NC  27539
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Friday, December 13, 6:00pm, at both the Millbrook and Wake Forest Campuses. Put on your Christmas jammies, grab a blanket and come out for a  festive night to watch the classic animated...

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Crossroads Fellowship
2721 E Millbrook Road
Raleigh, NC  27604
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Telephone: 919-981-0222
Contact Name: Lorraine Entwisle
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Have some fun and make something great at the Clay studio (and parents can sneak away and grab a bite or do some shopping at Northgate Mall). Each kid will complete and paint a piece of pottery...

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1058 West Club Blvd
Durham, NC  27701
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Embark on a wild ride with favorite Disney characters Mickey, Minnie, Goofy and many others in this fun-filled getaway featuring unexpected hijinks and character interaction. Purchase tickets...

Cost: $15 and up

Where:
PNC Arena
1400 Edwards Mill Rd.
Raleigh, NC  27607
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Sing along with the band as they perform holiday favorites of Christmas, Hanukkah, the winter solstice and more. 

Cost: Free

Where:
Cary Senior Center
120 Maury O'Dell Place
, NC  27513
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Celebrate the love and joy that this season brings by creating art inspired by a Christmas tree. Register online. Choose course #126761.

Cost: $32/resident, $42/nonresident

Where:
Cary Arts Center
101 Dry Ave.
Cary, NC  27511
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Give rugby a try. Take part in tag rugby pick-up games every Saturday morning at Baileywick Road Park, near the Second Shelter.  No experience necessary. All ages. 

Cost: Free

Where:
Baileywick Road Park
9501 Baileywick Rd
Second Shelter Field
Raleigh, NC  27615
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Sponsor: Raleigh Redhawks Rugby
Contact Name: denise travis
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Our Reindeer Romp is open to the entire community and our Girls on the Run families. So join us! Celebrate as nearly 1,000 girls reach their end-of-season goals – the finish line is only the...

Cost: $30 - $35

Where:
Koka Booth Amphitheater
8003 Regency Pkwy
Cary, NC  27518
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Sponsor: Girls on the Run of the Triangle
Telephone: 919-401-6307
Contact Name: Jamie Botta
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Ages 5-12 make a picture frame for the holidays. Snack provided. Register online. 

Cost: $30/resident, $45/nonresident

Where:
Halle Cultural Arts Center
237 N. Salem St.
Apex, NC  27502
View map »


Website »

More information

Ages 1-5 and caregiver delight in the discoveries of nature. Register online. 

Cost: $8/resident, $10/nonresident

Where:
Stevens Nature Center/Hemlock Bluffs
2616 Kildaire Farm Rd.
Cary, NC
View map »


Telephone: 919-387-5980
Website »

More information

Travel with us to Puerto Rico with books, games and arts and crafts!  Join the staff of ISLA (Immersion for Spanish Language Acquisition) for a fun filled hour! Best for ages 3 and up with a...

Cost: Free Gratis

Where:
Orange County Main Library
137 W Margaret Ln
Hillsborough, NC  27278
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Sponsor: Orange County Public Library
Telephone: 919-245-2539
Contact Name: Libbie Hough
Website »

More information

Embark on a wild ride with favorite Disney characters Mickey, Minnie, Goofy and many others in this fun-filled getaway featuring unexpected hijinks and character interaction. Purchase tickets...

Cost: $15 and up

Where:
PNC Arena
1400 Edwards Mill Rd.
Raleigh, NC  27607
View map »


Website »

More information

One ticket admits the entire family to decorate a special gingerbread house. Supplies provided. Workshops available at 2 p.m. and 4:30 p.m. Allergy-free workshop available at 11 a.m....

Cost: $40

Where:
Family Preschool
4907 Garrett Rd
Durham, NC  27707
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Sponsor: Family Preschool
Telephone: 919-402-1500
Contact Name: Sue Henson
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Family Wildlife Series: Holiday Habitat Helpers Saturday, December 14, 2-3 Attract winter wildlife to your backyard by providing or improving their habitat.  Create simple outdoor decorations...

Cost: Free

Where:
Blue Jay Point County Park
3200 Pleasant Union Church Rd
Raleigh, NC  27614
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Website »

More information

Embark on a wild ride with favorite Disney characters Mickey, Minnie, Goofy and many others in this fun-filled getaway featuring unexpected hijinks and character interaction. Purchase tickets...

Cost: $15 and up

Where:
PNC Arena
1400 Edwards Mill Rd.
Raleigh, NC  27607
View map »


Website »

More information

Embark on a wild ride with favorite Disney characters Mickey, Minnie, Goofy and many others in this fun-filled getaway featuring unexpected hijinks and character interaction. Purchase tickets...

Cost: $15 and up

Where:
PNC Arena
1400 Edwards Mill Rd.
Raleigh, NC  27607
View map »


Website »

More information

Join us as we watch for meteors during the Gemenids Meteor Shower. Local astronomers will help us observe these shooting stars and other phenomena in the night sky. As a bonus we may see or hear...

Cost: Free

Where:
American Tobacco Trail
1309 New Hill-Olive Chapel Rd.
Apex, NC  27502
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Sponsor: Harris Lake County Park and the American Tobacco Trail
Telephone: 919-387-4342
Contact Name: Joanne St. Clair
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Favorite Christmas songs are presented in authentic Nashville country style with dazzling guitars and fiddles along with soaring harmonies. Purchase tickets online. 

Cost: $25/person

Where:
Wake Forest Renaissance Centre
405 S. Brooks St.
Wake Forest, NC  27587
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Website »

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See the choir perform beloved Christmas songs with guest vocal group AVANTE. Purchase tickets online. 

Cost: See website for fees

Where:
Cary Arts Center
101 Dry Ave.
Cary, NC  27511
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