“When We Knew We’d Be OK”

Parents discuss coming to terms with their child’s diagnosis


Published:

The Comer Family of Apex

For most parents, the moment when a child is diagnosed with a serious condition or disability probably feels like the end of something — of family life as they know it, of their dreams for the future, of their sense of security in a world that, up to that very moment, was beckoning to them with its promises.

And yet, in a show of resiliency that can seem astonishing to outsiders, many families find their way back from that place of fear and anguish to reclaim a sense of normalcy, finding satisfaction in daily victories, both great and small, or community among others who walk a similar path. They embrace a new purpose. They cherish unexpected milestones. They find reasons to rekindle hope.    

We asked three such Triangle parents to share with us how they made that journey. Here are their stories.

 

Finding a New Normal

“The human connection was so important.”

Gwen Comer, Apex

My husband, Scott, and I have a blended family, including three college-age children, Slade, Alexis and Sloane; Mackenzie, who is 4½; and Libby, who is 2. When Mackenzie was 22 months old, she was diagnosed with Rett syndrome, a neurological disorder that is first recognized in infancy and seen almost always in girls.

Until she was 12 months old, Mackenzie developed normally, had a handful of words and was meeting typical milestones. We became concerned by her sudden loss of speech and inability to walk independently at 16 months. We visited a developmental nurse and subsequently saw our first physical therapist for evaluation. The PT said Mackenzie had hypotonia, or low muscle tone, which she described as a neurological issue. I nearly panicked at that very moment. I requested a visit with a pediatric neurologist, who ordered some diagnostic testing. Then came the diagnosis. We could not have been less prepared for the shocking news that day. 

Rett syndrome (named after Andreas Rett, the doctor who discovered it) is caused by mutations on the X chromosome. It causes problems in brain functions that can include learning, speech, sensations, mood, movement, breathing, cardiac function and even chewing, swallowing and digestion. Symptoms appear after a period of normal or near-normal development until 6-18 months, when there is a stagnation of skills, including communication and purposeful hand use. Other problems may include seizures and disorganized breathing patterns. There currently is no cure for Rett syndrome.

For the first month post-diagnosis, I was numb. Getting my arms around this information was overwhelming and confusing. I was four months pregnant and terrified not only for Mackenzie but also for our unborn child. Over the next few months I found myself reading until I fell asleep every night, trying to soak up any information I could find, to understand what this meant today and what it would mean for us going forward. I wanted desperately to connect with other families, just to know what life was like on this “other side” that we never expected to be a part of.

I will never forget the first Rett parent I talked to. He said, “It will be OK. You will find a new normal.”

The words “It will be OK” will resonate with me forever. This was my first realization that the human connection was going to be so important to me. I could read scientific articles for nights on end, but the actual contact with another family, another parent and another life unexpected — that was going to be an important coping mechanism for me and my family. So the quest began, to reach as many Rett families in the area as possible. To learn from them, share with them, connect with them, feel with them. To ask, how do we find our new normal? And with every new family connection, despite their daughter’s severity of symptoms, mutation or current family challenges, I began to feel that it would be OK.

We are grateful to have a lot of support, including our medical team, volunteers, family and friends, to ensure Mackenzie is as “typical” a 4-year-old as possible and that her future is a bright one. While we worry about Mackenzie’s future and the future of all girls affected by Rett syndrome, we focus our energy on how we can effect change by fundraising and raising awareness of Rett syndrome, by living our “new normal,” and by doing what most parents do: pave the way for the best possible future for their children.    

 

Accepting a Different Pace

“This is not a sprint — it’s a marathon.”

Kimberly Burrows, Holly Springs

After close to three years trying to get pregnant, my husband, Dave, and I were so happy when we found out we were expecting our son, Zach. He was born in 2002 and, despite being four weeks early, was a perfectly healthy child.

Zach was always very active, but by age 5 his activity level had intensified. He started kindergarten, where behavior and focus problems soon followed. We had a new baby at home, and initially we thought that this may have impacted him. However, he was finally diagnosed as having attention deficit hyperactivity disorder. Over the next six years, we received additional diagnoses including autism, Tourette’s syndrome, anxiety, sleep issues and a possible seizure disorder. Our lives quickly became multiple monthly visits with doctors and specialists, calls from school and meltdowns at home. As hard as it was for us as parents to cope, it was even harder to see our child in pain. Zach had very few friends and was struggling to fit in.

Zach Burrows of Holly Springs

There were so many times we wondered, “Why is this happening?” or “How can we get through this?” Our saving grace was a wonderful therapist who reminded us that there was hope. He would often tell us, “This is not a sprint — it’s a marathon.” He helped us find the right doctors and therapies.

The other person who helped us through this was Zach. Despite his disabilities, he is such a caring, loving child that he inspired us to keep going.

In November 2013, we moved to North Carolina. We hoped the move would be a fresh start for our family and that we would have better access to healthcare. We were pleased when Zach adjusted well at his new school and started making friends.

Then, in May 2014, Zach was dealt another blow. What started as a stomach bug turned into a five-day stay at Duke Children’s Hospital. He recovered, but a week later the symptoms were back. He was readmitted and diagnosed with a rare metabolic condition, glutaric acidemia, which inhibits his body’s ability to process fat and protein. At the time he was admitted, Zach was in metabolic crisis. Fortunately, he recovered, but it has meant drastically changing his diet. Imagine telling a 12-year-old he can no longer eat meat, have pizza with friends or go out to eat with his family. His diet now consists of 12 servings of fruit and fewer than 50 grams of fat and protein per day. He can’t run or exercise for long periods of time because he doesn’t have energy reserves like other people.

My husband and I dealt with this diagnosis differently. Dave is a scientist, so he dove into the research, determined to read everything about this disorder so it could be treated better. I had a more emotional reaction: I got mad. For a week, I was upset with the world, angry that Zach had to face another challenge. However, my “mad” got me through and allowed me to move to the next stage, which was acceptance.

But Zach’s diagnosis also came as a relief. It helped explain why Zach had had so many problems with medication for his other disorders. We finally had the answers we had sought for so many years, and we saw there was a plan for the future. That is not to say it is easy, but it is better. He still struggles and there are times when his new diet frustrates him, but we are so proud of him. Zach has overcome so much, and he refuses to let his disabilities define him. He is truly remarkable!

 

Readjusting Expectations

“The thing about Tucker…”

Bill Baragona, Cary

We were at the doctor’s office halfway through my wife’s second pregnancy when the doctor told us there was a 50/50 chance of a major problem. That’s when it all started. It was 2001, and life was never the same.

In our case it was tuberous sclerosis, a rare genetic disorder that causes benign tumors to grow in many parts of the body.  In some cases the tumors are in harmless places and do nothing. In Tucker’s case the tumors are small knots in his brain that cause seizures and prevent typical mental development. When he was first born we had no idea how bad it would be, but the doctor told us upfront that any number of knots in the brain over eight would be a problem. Our hearts were torn out when the MRI came back with a number of 32 and counting.

For us this means we have a child who will never talk, who eats his clothes and anything else he can get in his mouth, and who can never be left unsupervised. A child whose room can only have a bed with a special box built around it so he doesn’t eat the sheets, and whose pajamas consist of a wrestling singlet safety-pinned to his shirt and shorts, because without the pins we will come in and at least one article will be gone, down the old gullet. A child whose only sign of real intellect is in his ability to beat whatever system we come up with to keep him out of that sort of trouble. At least that’s something.

Tucker Baragona

But the thing about Tucker is that he never smarts off or is disrespectful. He never underachieves, and we never get so fed up with him we want to scream. As the father of two other children who are typically developing, I know that is a normal feeling with most kids. Tucker can’t make you mad, and he never needs to be punished. He will never say he hates you, and he will never leave.

When I consider when it was that I knew we’d be OK, I can honestly say that, for me, it was not a single incident or time I can recall. It was more the growing understanding of the role expectation plays in our own happiness.

 

The other day my older son Gabe’s coach came up to Tuck, who’s now 13, and reached out to shake his hand. Now, Tucker grabs everything and everyone, so naturally he took the outstretched hand. It was his first handshake. I almost cried. He didn’t realize he was “shaking hands,” but the moment just seemed so normal. If you hold out your hand right to his face, he will lean forward and kiss it. It feels the same as when my other sons get an “A.” When we wake him up and he has not eaten his clothes, or if the baby gate is down and he didn’t get in the shower fully dressed and turn it on, it feels just like when a typical kid does his chores. It feels good. He has almost learned to hug and he knows what peanut butter is. I feel a sense of pride when he catches the pantry door open and brings me the jar. 

It’s that kind of thinking that will get you through the challenges of your child’s disability with your heart intact.

 

Karen Lewis Taylor is a freelance writer and editor and has served as project editor for Exceptional Child since its inaugural issue, Special Edition, in 2010.

 

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Calendar

November 2017

Step back in time with a 19th-century costumed interpreter and watch the millstones at work grinding corn into meal. Registration encouraged online. Tickets available at the...

Cost: $5/adult, $3 ages 7-16. Free for ages 6 and younger

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


Telephone: 919-856-6675
Website »

More information

Celebrate the wonderful world of exotic animals and reptiles. Enjoy live specimens, presentations, raffles, vendors and much more. Purchase tickets online.  

Cost: $12 ages 13 and older, $5 ages 5-12.

Where:
N.C. State Fairgrounds, Kerr Scott Building
1025 Blue Ridge Rd.
Raleigh, NC
View map »


Website »

More information

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
View map »


Sponsor: Babies On The MOVE
Contact Name: Rebecca Quinones
Website »

More information

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 »

More information

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
View map »


Sponsor: Babies On The MOVE
Contact Name: Rebecca Quinones
Website »

More information

Kicks off the holiday season with local art, music, food, and family activities at various locations in Durham’s historic downtown district. Presented by the Durham Arts Council with support...

Cost: Free and open to the public.

Where:
Downtown Durham
120 Morris St.
Durham, NC  27701
View map »


Sponsor: Durham Arts Council
Telephone: 919-560-2719
Contact Name: Susan Tierney
Website »

More information

Participants develop their naturalist skills and understanding of local nature. Ages 5-8 with parent. 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

Celebrate the natural world and where favorite Thanksgiving foods come from. Make a craft. All ages with adult. Register online.

Cost: $1/person

Where:
Crowder District Park
4709 Ten-Ten Rd.
Apex, NC
View map »


Telephone: 919-662-2850
Website »

More information

Search the preserve for hidden holiday-themed clues and learn about native wild turkeys. Make a turkey decoration. Ages 5 and older with parent. Register online. Choose course code...

Cost: $1/person

Where:
Horseshoe Farm Nature Preserve
2900 Horse Shoe Farm Rd.
Wake Forest, NC
View map »


Website »

More information

Search for salamanders, owls and more. Ages 10-13. Register online.

Cost: $12/resident, $16/nonresident

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


Telephone: 919-387-5980
Website »

More information

Park West Village hosts Winter Wonderland in the District. This year’s event will take place the weekend of November 17th. Take the family to enjoy train rides, magical winter lights, live...

Cost: Free; $5 donation for sledding

Where:
Park West Village
3400 Village Market Place
Morrisville, NC  27560
View map »


Telephone: 919-234-6710
Contact Name: Conner Dixon
Website »

More information

See ponies, hunters and jumpers compete in an event that benefits Duke Children's Hospital. Visit the website for hours and fees.

Cost: See website for fees

Where:
Gov. James B. Hunt Horse Complex
4601 Trinity Rd.
Raleigh, NC
View map »


Website »

More information

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Children ages 18 months-4 years and their parents enjoy free creative movement and music classes. The creative movement class focuses on the development of gross motor skills and...

Cost: Free

Where:
Saint Raphael Preschool
5801 Falls of Neuse Rd.
Raleigh, NC  27615
View map »


Sponsor: St. Raphael Preschool
Telephone: 919-865-5725
Contact Name: Sarah Rapp
Website »

More information

Make crafts celebrating turkeys. All ages with adult. Meet at the Cardinal Shelter. Registration not required. 

Cost: Free

Where:
Crowder District Park
4709 Ten-Ten Rd.
Apex, NC
View map »


Telephone: 919-662-2850
Website »

More information

Show More...
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Children ages 18 months-4 years and their parents enjoy free creative movement and music classes. The creative movement class focuses on the development of gross motor skills and...

Cost: Free

Where:
Saint Raphael Preschool
5801 Falls of Neuse Rd.
Raleigh, NC  27615
View map »


Sponsor: St. Raphael Preschool
Telephone: 919-865-5725
Contact Name: Sarah Rapp
Website »

More information

Kids ages 6 and younger enjoy stories. Take part in an optional arts and crafts session after storytime for $5.

Cost: Free

Where:
Read With Me Book Shop
111 E. Hargett St., $110
Raleigh, NC  27601
View map »


Website »

More information

Learn what it was like to be a kid at the first Thanksgiving. Play games and make a food collage. Choose either the 10:30-noon and 2-3:30 p.m. session. Ages 7 and older. Register online.

Cost: $6/child

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


Telephone: 919-856-6675
Website »

More information

Show More...
Show Less...

Toddler Time is a special time for ages 5 and younger to bounce under the supervision of their parents, and without interference from the big kids. Purchase tickets online.

Cost: $7-$10

Where:
Sky Zone Durham
1720 Guess Rd., Ste. 90
Durham, NC  27701
View map »


Website »

More information

Children ages 18 months-4 years and their parents enjoy free creative movement and music classes. The creative movement class focuses on the development of gross motor skills and...

Cost: Free

Where:
Saint Raphael Preschool
5801 Falls of Neuse Rd.
Raleigh, NC  27615
View map »


Sponsor: St. Raphael Preschool
Telephone: 919-865-5725
Contact Name: Sarah Rapp
Website »

More information

Explore the woods and shoreline for signs of nature and collect treasures to make a craft. Take a full water bottle, snack and a bag lunch. Ages 6-11. Meet at the Cypress Shelter. Advance...

Cost: $16/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: Jackie Trickel
Website »

More information

Kids ages 6 and younger enjoy stories. Take part in an optional arts and crafts session after storytime for $5.

Cost: Free

Where:
Read With Me Book Shop
111 E. Hargett St., $110
Raleigh, NC  27601
View map »


Website »

More information

Listen for the sound of silver bells and climb aboard in your pajamas for a first-class journey on the Polar Express. Come early to meet Santa and enjoy kid-friendly activities and a traditional...

Cost: $14-$29

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


Website »

More information

Athletes improve their flexibility, balance, joint mobility, as well as body and breath awareness. Special attention will be paid to core strength and posture and its importance in performance and...

Cost: Call for fees

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


Sponsor: Little Guru Kids Yoga
Telephone: 919-345-5873
Contact Name: Jen Bluestone
Website »

More information

Show More...
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Children ages 18 months-4 years and their parents enjoy free creative movement and music classes. The creative movement class focuses on the development of gross motor skills and...

Cost: Free

Where:
Saint Raphael Preschool
5801 Falls of Neuse Rd.
Raleigh, NC  27615
View map »


Sponsor: St. Raphael Preschool
Telephone: 919-865-5725
Contact Name: Sarah Rapp
Website »

More information

Show More...
Show Less...

Celebrate what you're thankful for. Play a game and make a pine cone turkey craft. All ages with adult. Drop-in program. Registration not required.

Cost: Free

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


Telephone: 919-856-6675
Website »

More information

Shop more than 20 local vendors offering amazing gifts this holiday season. Enjoy daily raffles with proceeds benefiting local animal rescue Paws in the City. Kids can enjoy crafts...

Cost: Free

Where:
Cary Crossroads
333 Crossroads Blvd
Cary, NC  27518
View map »


Website »

More information

Children ages 18 months-4 years and their parents enjoy free creative movement and music classes. The creative movement class focuses on the development of gross motor skills and...

Cost: Free

Where:
Saint Raphael Preschool
5801 Falls of Neuse Rd.
Raleigh, NC  27615
View map »


Sponsor: St. Raphael Preschool
Telephone: 919-865-5725
Contact Name: Sarah Rapp
Website »

More information

A wonderfully kid-paced hour featuring music, play and dancing with toddler stars singing on the mic at Cotton's gently amplified & participatory music show. Children delight in...

Cost: Free with admission

Where:
Pump It Up Raleigh
10700 World Trade Blvd, #112
Raleigh, NC  27617
View map »


Sponsor: Pump it Up
Telephone: 919-828-3344
Contact Name: Owner/manager Kellie Paterson McHugh
Website »

More information

Read the story by Karma Wilson and make a Thanksgiving-themed craft. All ages. Registration not required.

Cost: Free

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


Telephone: 919-856-6675
Website »

More information

See a contemporary re-imagination of Tchaikovky's timeless music. Purchase tickets online.

Cost: $35-$55

Where:
Durham Performing Arts Center
123 Vivian St.
Durham, NC  27701
View map »


Website »

More information

See the classic holiday story brought to life onstage featuring favorite characters Santa and Mrs. Claus, Hermey the Elf, Bumble the Abominable Snow Monster, Clarice, Yukon Cornelius and...

Cost: $15 and up

Where:
Fletcher Theater
2 E. South St.
Raleigh, NC  27601
View map »


Website »

More information

See the classic holiday story brought to life onstage featuring favorite characters Santa and Mrs. Claus, Hermey the Elf, Bumble the Abominable Snow Monster, Clarice, Yukon Cornelius and...

Cost: $15 and up

Where:
Fletcher Theater
2 E. South St.
Raleigh, NC  27601
View map »


Website »

More information

See a contemporary re-imagination of Tchaikovky's timeless music. Purchase tickets online.

Cost: $35-$55

Where:
Durham Performing Arts Center
123 Vivian St.
Durham, NC  27701
View map »


Website »

More information

Catch this comedy classic on the big screen—as the symphony plays the charming and delightful score by John Williams live. Purchase tickets online.

Cost: $14-$29

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


Website »

More information

Show More...
Show Less...

Fit & Able Productions presents the Turkey Chase trail festival at Umstead Park. Take part in a 5K, 10K or 20K. After the race, enjoy fruit, brownies and other...

Cost: $25-$45

Where:
Umstead Park
8801 Glenwood Ave.
Raleigh, NC  27617
View map »


Sponsor: Fit and Able Productions
Telephone: 919-673-4689
Contact Name: Travis
Website »

More information

Celebrate what you're thankful for. Play a game and make a pine cone turkey craft. All ages with adult. Drop-in program. Registration not required.

Cost: Free

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


Telephone: 919-856-6675
Website »

More information

Toddler Time is a special time for ages 5 and younger to bounce under the supervision of their parents, and without interference from the big kids. Purchase tickets online.

Cost: $7-$10

Where:
Sky Zone Durham
1720 Guess Rd., Ste. 90
Durham, NC  27701
View map »


Website »

More information

Shop more than 20 local vendors offering amazing gifts this holiday season. Enjoy daily raffles with proceeds benefiting local animal rescue Paws in the City. Kids can enjoy crafts...

Cost: Free

Where:
Cary Crossroads
333 Crossroads Blvd
Cary, NC  27518
View map »


Website »

More information

The Raleigh Boychoir makes an appearance before its big Christmas concert.

Cost: Free

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


Website »

More information

Kids ages 6 and younger enjoy stories. Take part in an optional arts and crafts session after storytime for $5.

Cost: Free

Where:
Read With Me Book Shop
111 E. Hargett St., $110
Raleigh, NC  27601
View map »


Website »

More information

See the classic holiday story brought to life onstage featuring favorite characters Santa and Mrs. Claus, Hermey the Elf, Bumble the Abominable Snow Monster, Clarice, Yukon Cornelius and...

Cost: $15 and up

Where:
Fletcher Theater
2 E. South St.
Raleigh, NC  27601
View map »


Website »

More information

Take a 30-minute tour to view the main power drive and milling machinery. Tickets available inside the park's visitor center. Online registration encouraged.

Cost: $5/adult, $3 ages 7-16. Free for ages 6 and younger

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


Telephone: 919-856-6675
Website »

More information

Explore the historic nature of Leigh Farm Park with a friendly guide. Venture inside the historic farmhouse while being captivated by tales about life at Leigh Farm throughout the years.

Cost: Free

Where:
Leigh Farm Park
370 Leigh Farm Rd.
Durham, NC  27707
View map »


Sponsor: Durham Parks and Recreation
Telephone: 919-560-1116
Contact Name: Natalya Buckel
Website »

More information

See the classic holiday story brought to life onstage featuring favorite characters Santa and Mrs. Claus, Hermey the Elf, Bumble the Abominable Snow Monster, Clarice, Yukon Cornelius and...

Cost: $15 and up

Where:
Fletcher Theater
2 E. South St.
Raleigh, NC  27601
View map »


Website »

More information

Catch this comedy classic on the big screen—as the symphony plays the charming and delightful score by John Williams live. Purchase tickets online.

Cost: $14-$29

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


Website »

More information

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Show Less...
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