By Chris Rogers | January 16, 2023
The gentle reach of his hand asking to hold hers, resting his foot on her leg, a smile as he looks her way – Kelly Satter has grown to appreciate the little signs of gratitude and love from her son, DJ.
The now-five-year-old was born in 2017 with Dandy-Walker and numerous other co-occurring conditions. Since his birth, Kelly has transformed her life to become not only DJ’s full-time caretaker, but a fierce advocate dedicated to raising Dandy-Walker awareness in her community and on social media.
Her Facebook page, Rocks-N-Rainbows, gives more than 4,000 followers a “Daily Dose of DJ,” chronicling his ups and downs as he navigates seizures, mobility limitations, feeding tubes, and more. But through it all, Kelly and DJ are usually wearing smiles in their pictures.
Kelly and her husband, David, learned of DJ’s Dandy-Walker diagnosis in utero. At 28 weeks they were sent to a high-risk doctor who listed six abnormalities found on the latest ultrasound, including Dandy-Walker.
The Satters had previously suffered a stillbirth, so despite knowing the challenges ahead, they were excited for DJ’s arrival.
“We were going to ride this journey out with him and bring him into this world,” Kelly said.
Throughout her pregnancy, they worked with the same doctor who guided them through the stillbirth process, so they had a level of comfort and familiarity. Kelly took time off work early and went on bed rest, knowing that DJ was a high-risk pregnancy and there was a chance of an emergency c-section.
Ultimately, she gave birth naturally, and was able to hold DJ for a few seconds. Then, doctors whisked him away to the NICU, where he stayed for 42 days. He needed six surgeries in that month and a half, including fixing a recessed chin that made him unable to breathe on his own and a double cleft palate. Throughout this time, Kelly stayed in the Rainbow House near the Omaha Children’s Hospital, visiting him daily.
Finally, DJ came home in December 2017, six weeks after birth and just a few days before Christmas – a perfect present for two parents who were beyond excited to have him.
“We’d had so much loss before he came, and he’s actually here now.”
In the five years since, the Satters have experienced wild variability in his day-to-day outlook –– what Kelly calls the “revolving door of DJ.” Sometimes he’ll have a stretch of a good few days or weeks. Then, he might have a seizure that requires a hospital trip or wake up in the middle of the night needing more oxygen.
In 2020, he had a serious bout with (respiratory syncytial virus) that led to double pneumonia. He flatlined twelve times in front of his mother, and ever since then it’s been a different journey, she said.
DJ still has not yet gained back all the skills he had developed in the first three years of his life. He’s slowly gained new skills in place of the ones he lost, and his parents are hopeful that as time goes on, he’ll continue to hit milestones and regain many of the old ones. But, more importantly? He’s still here.
To this day, he still sees his fair share of specialists and therapists. He regularly goes to occupational and physical therapy, as well as intermittently going to speech therapy. But many of his other appointments – his pulmonologist, neurologist, plastic surgeon, and ENT, among others – have transitioned to annual check-ups.
He needs to be fed through a gastrostomy button in his stomach. For a while, his dietician would give Kelly recipes that she could make at home – she would cook from scratch using fresh ingredients and then blend up to a point where he could consume it through his button.
As DJ has grown, Kelly has grown as a parent and caregiver as well. Along the way, she decided to start sharing their family’s journey on her Facebook page.
Not only has this provided a space for her to share her thoughts and feelings as she and DJ navigate each day together, but it’s built a community where she and other families in similar situations can share stories, experiences, and ideas with each other. Perhaps most importantly, it’s created an avenue for her to show the beauty and value that a child with Dandy-Walker can give the world.
Kelly often thinks of what DJ’s original geneticist told her just weeks after he was born: there’s nothing wrong with him, he’s just unique. She’s carried that forward, making it her mission to help those around her understand that DJ is human in all the same ways that a neurotypical child is.
“They are people too. Whether they can talk or sit or walk or respond, they can feel it all,” she said. “You can see it in his eyes, there’s more going on up there than a lot of people give him credit for. The biggest thing is to slow down so you can see it and appreciate it.”
Through all the ups and downs, the spark in his eyes and the subtle demonstrations of affection reaffirm Kelly’s unconditional love for DJ and drive her to keep finding solutions to help him grow and thrive.
“I just want to keep him around,” she said. “I just want to give him everything I can give him.”