Rosalie’s Story
Julie and Doug relocated to Spokane from their home in the Midwest in 2017. Doug had finished his training as an Interventional Radiologist and had taken a position at Inland Imaging in Spokane. Julie left her role as a middle school principal in Ohio as they embarked on their new journey and took an assistant principal role at Glover Middle School in Spokane. Shortly after Julie and Doug relocated to Spokane, they learned that Julie was pregnant and their first child. After a healthy pregnancy, Rosalie, was born on May 29, 2018. Rosalie was deeply wanted and unconditionally loved.
From the time Rosalie was born, she resembled a little bird. As an infant, she looked like a little bird in search of food whenever she wanted to eat. Then, we noticed that her hair stood up like a mohawk, that despite our best efforts would not stay down, and we started calling it her birdie feather, thus the name "Birdie Babe" was born. Birdie was a sweet baby with a calm and pleasant demeanor. She loved being around her family and she took frequent adventures, making her first National Park trip, to Glacier National Park, at 2 months of age.
Julie returned to her role as an assistant principal in the fall of 2018 and Rosalie went to an in-home childcare facility full time.
As Rosalie grew, Julie and Doug began to notice that she was slower to meet milestones, and by 8 months old Rosalie wasn’t sitting independently, so they got a referral for a physical therapy evaluation. Rosalie was evaluated and began receiving physical therapy services at 9 months of age, and she was diagnosed with a global developmental delay, which meant that she wasn’t where she should be developmentally, but there wasn’t a specific diagnosis to explain the delays.
After being diagnosed with a global developmental delay, Rosalie was referred to a physician who specializes in pediatric genetics. The doctor did genetics testing and when the results came back in July 2019, Julie and Doug learned that their sweet Birdie Babe had an extraordinarily rare genetic disorder with a 5q33.3-34 deletion. At the time of Rosalie’s diagnosis there was no one else in the medical literature who had the exact same genetic deletion as her. Despite having a rare genetic diagnosis and developmental delays, Rosalie was healthy and strong and there were no medical concerns.
On the day that the genetic specialist delivered the news of Rosalie’s diagnosis to Julie and Doug, the physician told them that Rosalie would never live independently, would never drive, and would likely have an intellectual disability. Upon learning of Rosalie’s diagnosis and the struggles that might lie ahead, Julie immediately quit her job as an assistant principal to provide full time care for Rosalie and to transport her to her many appointments. Julie was familiar with the importance of early intervention because of her background in education and she and Doug were committed to giving Rosalie every possible opportunity.
After leaving her professional role, Julie called herself Rosalie’s full time “momager”. Rosalie quickly acquired many weekly appointments that took place throughout the greater Spokane region. Rosalie attended weekly physical therapy, occupational therapy, and speech therapy. She also saw a chiropractor and a craniosacral therapist on a regular basis. She participated in music class, gymnastics class, swimming lessons, co-op preschool, and the Parent Child Class at Windsong School. While it meant that Rosalie and Julie spent a lot of time in the car, Julie and Doug were committed to giving Rosalie as many experiences as possible, and when possible, they wanted Rosalie to participate in activities with typically developing peers.
Each of Rosalie’s therapy appointments came with its own home exercise program which consisted of activities that Julie and Doug could work on at home to help Rosalie gain skills. Even with all of the therapy, enrichment activities, and adherence to the home exercise programs, Rosalie was 14 months old before she started to crawl and 22 months old before she became an independent walker.
After Rosalie started walking it was like a switch had been flipped and she blossomed so much in her overall development. She quickly gained cognitive and language skills and she was eager to explore her environment. Rosalie still had developmental struggles and helping reach her potential and her developmental milestones was a full time job, but she was making promising progress.
As Rosalie grew and progressed, Julie started thinking about returning to work after Rosalie started preschool at the age of 3. Julie knew that Rosalie’s disabilities would qualify for preschool through the local school district; however, school district preschool was only a couple of hours a day, a few days a week, and there wasn’t an option to add before or after care to make it full time. Julie began looking for other preschool options in Spokane and quickly found that there were no full time preschool options that would meet Rosalie’s developmental needs and many would not admit her because she was not potty trained. It became apparent that returning to work was going to be difficult. At best, Julie and Doug would have had to cobble together care for Rosalie that consisted of public school preschool and someone or someplace that would be willing to take her despite not being potty trained. It was also possible that they wouldn’t be able to find anyone who would care for Rosalie.
Another consideration for Rosalie’s preschool was that Julie and Doug valued a child driven, play based preschool experience for Rosalie. With Julie’s background in education she knew that there would be times that school would be hard for Rosalie and she didn’t want Rosalie to be placed in an academic setting any earlier than she had to be. Further, Rosalie’s most significant developmental delay was her gross motor skills, which meant that she needed opportunities to move and play.
An additional compounding factor to finding a preschool was that Rosalie still had her multiple therapy appointments to attend each week. She was still receiving physical therapy, occupational therapy, and speech therapy on a weekly basis. Additionally, she still regularly saw her chiropractor and her craniosacral therapist. So, even if there was a preschool that would take Rosalie full time Julie and Doug would still have to find a way to take her to all of her therapy appointments, which would likely mean taking her to her appointments in the evenings, multiple evenings a week, thus leaving little time together as a family.
In going through this process, Julie recognized the need for a therapeutic, full day, child care center for children ages 3-6 in Spokane. Julie had started saying that someday, when she had the time, she was going to figure out how to serve families and children in the area by providing full day care for older toddlers who have disabilities, and while children are in their daycare setting, they would receive their individual therapy services and other enrichment activities.
Ultimately, Rosalie attended the multi ages kindergarten program at Windsong School when she was three years old in the fall of 2021. Rosalie was in Miss Renee’s class and she attended school three days a week for four hours a day. The wonderful staff at Windsong was willing to accept Rosalie despite not being potty trained and her unique developmental needs. Windsong was a tremendous fit for Rosalie, she gained so many new skills and her confidence grew. She loved to play outside, play in the water, dirt, and sand, and to color and watercolor with her classmates. Windsong was such a gift for Rosalie and thrived in her short time there.
Rosalie was a bit under the weather the week of November 8, 2021. She had a little bit of a cough and a runny nose. We decided to keep her home from school and therapy because we wanted her to rest and we didn’t want to risk her exposing other children to her cold. Julie and Rosalie had a wonderful, low-key week at home; a rare experience given Rosalie’s busy appointment schedule. On Wednesday, November 10, Rosalie was starting to feel better, but still had a runny nose, so Julie kept her home for that day, and Julie and Doug decided that if Rosalie woke up in time to go to school on Thursday that she would return to school on Thursday, November 11. However, Rosalie did not wake up on Thursday, November 11. She died unexpectedly and without a known cause, in her sleep. Rosalie was just shy of three and a half years old when she died.
After Rosalie’s unexpected death, Julie knew that she wanted to honor Rosalie’s memory by launching a foundation with the goal of providing enriching and inclusive early childhood experiences for children who have disabilities. Initially, the foundation will provide scholarships for enrichment activities, and the big, longer term goal is to open a full day, therapeutic child care center for children ages three through six who have disabilities.