Jessica Burdg is the volunteer editorial chair for The Brain Possible, a website that serves as a resource for parents and caregivers of differently abled children. Jessica writes the Stories of Hope series for the site, which is a collection of stories from real families who are embracing hope and possibility for their children instead of focusing on their limitations.
While interviewing these families for the series, Jessica became close to them, and she decided that she wanted to go one step further in sharing the gift of inspiration that these stories can bring to the world.
Jessica just launched a new book, More Than a Diagnosis: Stories of Hurdles, Hope and Possibility From Parents of Children Who Are Differently-Abled.
The stories in this book are raw, real, and will change the reader forever. Jessica recently noted on The Brain Possible podcast, “It’s been a gift to do this. … It’s made me a better parent and a better person, and that’s why I’ve continued to do this.”
Here are just a few excerpts from this collection of stories that will uplift, inspire, and encourage people everywhere to look at any situation they may be facing and ask, "What's possible?"
Gabe
Gabe is sweet, affectionate, and kind. He is a joy to be around and an expert at connecting well with people — whether that’s his mother, Nicole; her partner, Caroline; or a person he’s never met. One of his favorite activities in the world is listening to music, so much so that some type of music or another plays all day in his home. He often hums along, communicating his emotions through music and sound.
Though his affection for those he loves and his affinity for music are common human experiences, there is something about Gabe that is a little less common: He has autism and ADHD.
Today, Gabe understands everything, but has difficulty following multi-step instructions. He doesn’t have an awareness of dangers and needs help with almost everything. He is nonverbal and uses a communication device to interact. He is in an Applied Behavior Analysis (ABA)-based 2:1 class at school, where he learns, socializes, and furthers his motor planning.
While Nicole acknowledges the challenges of raising a son with autism and ADHD, she is also quick to acknowledge that her family chooses to fill their days, while sometimes more difficult than others, with fun, love, and positivity.
“Even though Gabe is nonverbal, his receptive language is strong,” Nicole says. “He’s incredibly intelligent because he’s able to figure out a way to get his needs met nonverbally. That’s amazing.”
Piper
Ashley Wood and her husband, Tim, were overjoyed to discover they were pregnant with twins, after another successful round of IVF. (Their son, Owen, was another success story, born two and a half years prior.) After a bumpy start, Ashley's pregnancy and delivery went smoothly: Piper and Mimi were born vaginally, with no complications. All early testing for the girls was clear.
Then, at 4 months old, Piper had her first seizure. It was a simple partial seizure, where her right arm started to rigidly pulse and pump.
At 6 months old, Piper had what would be her first grand mal seizure, one that would forever alter the lives of her entire family.
When she was 8 months old, genetic testing confirmed that Piper had Dravet syndrome, a condition caused by a random genetic mutation in the SCN1A gene. Dravet syndrome is medication-resistant and characterized by frequent and sometimes catastrophic seizures, making it one of the most devastating forms of childhood epilepsies.
"Piper is constantly teaching me," Ashley says. "She's put me on the fast track for personal growth and transformation I needed. When a seizure hits, it's an instant reset of knowing what is important. It is a reminder that now is a gift. And no, I wouldn't mind if a cure came along for Piper and all kids like her. But, until then, I'm going to take the lesson every day."
"If we listened to the doctors describe the prognosis for Piper 10 years ago and look at Piper today, there's no comparison," Ashley adds. "She's so full of joy, resiliency, and grit. She wears this cute little soft helmet every day, which is the only reason people know anything is different about her. She can have a seizure that literally knocks her down, she'll pass out, then she'll wake up and ask to play a game. She's a miracle."
Sammy
Sammy is 6 years old. He loves music, laughing, and being silly. He enjoys being active, especially going to concerts, visiting playgrounds, and swimming.
Another fact about Sammy, something his parents, Anna and Joey, address as simply another attribute about their son — is that he has cerebral palsy (CP) with global delays.
“We don’t talk about it as a disability, but rather as just something that’s part of him, like having brown hair. You are not a person with brown hair. You are you, and you have brown hair. You may have defining characteristics, but they don’t define you wholly as a person,” says Anna.
Sometimes, when parents see Sammy crawling on the playground, Joey will explain that his son has CP and can’t walk yet. He often hears, “Oh, I’m so sorry.”
“If I could change anything about the world around any kind of brain injury diagnosis, I’d say it’s not a ‘sorry’ situation. It’s a starting point. Yes, a different starting point than typical children have, but a starting point. They say sorry, which stops their ideas about Sam, relating to him and seeing him for who he is. They think it’s an endpoint. We never have,” Joey says.
He adds: “If you have hope, you have the tenacity to keep going. That’s one thing that you need as a special-needs parent. To learn to accept who your child is and that their life will improve in many ways. Their circle of friends will grow. They will get to play. They will get to go to the beach. Just … life. They will have that."
Beau
Beau, who turned 2 on New Year’s Eve, started to pull up to stand last Christmas — a gift you can’t wrap. He loves human interaction and animals. To say hello, he’s fond of grabbing people’s faces and staring into their eyes, smiling sweetly. It’s that sweetness, in fact, that his mom, Kim, calls his hallmark.
“Beau is definitely the sweet one in the family,” she laughs. “My daughter, [Beau’s older sister Sutton], is the wild one, so they balance each other out nicely.”
Beau is also hearing-aided and nonverbal, and it’s unclear so far as to his level of understanding. There are many unknowns, in fact, because Beau has an extremely rare genetic condition called 16q11.2-12.2 microdeletion. There are only a handful of other children in the world who have this condition — one that causes kidney disease, hearing loss, low muscle tone, developmental delays, sensory processing issues, and perhaps autism.
Kim’s advice to families facing a challenging diagnosis is to go heavy on the grace. If you don’t get everything done in one day — all the cleaning, all the treatments — it’s OK. Sometimes, Kim says, it’s good to just enjoy your child and not get stuck in caregiver mode.
Being in caregiver mode is a big part of raising a special-needs child, though, and Kim knows that all too well. Beau may need lifelong support. He will always have medical issues, and there are many unknowns around whether he may someday develop benign brain tumors, a potential complication of his genetic condition down the road.
“For some reason, I just know that all of this will be worth it,” Kim says. “In fact, it already is. It’s hard for someone who hasn’t lived it to understand. This isn’t the journey I would have chosen, but now that I’m on it, I feel like my whole life has led up to being Beau’s mom. This is where we’re all meant to be.”
