Kimberly and Steven are the loving parents of Justin, an 18-year-old living with Hunter syndrome. When their son was diagnosed at 3 years old, they embarked on an unexpected and challenging journey. Through it all, their love for Justin has fueled the determination and focus needed to help him live with his condition.
Finding strength through organization
When Steven found out that his son had Hunter syndrome, he felt powerless. There was nothing he could do to make the disease disappear. But he realized there was one thing he did have control of: making sure Justin’s medical records and information were organized. Developing a system to keep everything orderly and handy turned out to be therapeutic for Steven—and beneficial for Justin’s journey.
Organizing is a hobby for me, and it’s also very therapeutic. Thinking back to the diagnosis, I realized I couldn’t control everything; the only thing I could control was organizing his files. I started on day one.
It’s a hybrid world
When Justin was diagnosed with Hunter syndrome, electronic medical records were not as common as they are today. Kimberly and Steven began to carefully label and store their son’s health information in a filing cabinet. As the world became digitized, they combined their paper records with the convenient and easy online platforms that keep Justin’s medical history handy.
Even though Steven would like to go the paperless route, there are many reasons he and Kimberly still rely on their original method. One is that it allows them to write down information they consider valuable.
“What gets lost with an electronic method is any notes taken during a visit. We have always brought the pertinent paper file with us to medical appointments, and obviously for procedures. We also have specific notes that we write down.
Sometimes the electronic files we received didn’t have the level of detail we needed, but there’s information we’d like to know and keep a record of.
Another advantage of their paper records is that they date back to the very beginning, when Justin was diagnosed.
“For example, if we’re going to a hearing appointment, we can pick up the file and run. Some practices only have a few years of electronic medical records available, and sometimes we do have to go back to our personal files to look at some baseline tests.
“A lot of times we’ve gone to an appointment and they don’t have records dating back to a certain period. We’ll have at least a physical file—surgeries and anesthesia are a big one. That’s not in any [electronic] record, but I have the physical copy.”
Kimberly and Steven’s paper recordkeeping has also come in handy in other areas of their son’s life. Even though Justin has reached the legal age of an adult, he still needs close attention and care from his parents.
“When we filed for legal guardianship when Justin turned 18, we had to fill out a medical questionnaire about all of the procedures that he had. We needed to go back into our files, our own personal files.
If we had to rely on the electronic medical records, we wouldn’t have been able to retrieve all of that. So our personal paper records are not only useful for the medical community—we also need them for other aspects of Justin’s life.
Transitioning between doctors can also be an emotional and logistical challenge. Kimberly and Steven recently went through it when Justin’s geneticist retired. They were sad to lose the doctor who had seen their son for 15 years—somebody who knew the ins and outs of Justin’s medical history and who had established a great bond with him. Luckily, they quickly found a new geneticist they felt comfortable with. But starting fresh with her meant answering many questions about Justin’s medical history—and some of them could only be answered with Kimberly and Steven’s physical files. Once again, their years of discipline and order helped them through this transition.
Parents, caregivers, and care coordinators
Kimberly and Steven are passionate parents and caregivers, and they’re willing to wear as many hats as needed to ensure Justin has the best care.
“With so many doctors, keeping everyone in communication can be a challenge. So we as parents are the ones who help keep the entire team informed.
We are the care coordinators. So we might have to let one doctor know about A and another doctor know about B so they can talk and put it together.
“Everybody has their subspecialty, everybody has their niche, but sometimes you’ve got to look at the whole person, and that’s sometimes what gets lost. Justin’s geneticist is the closest we have to a doctor that’s kind of looking at him as a whole person. But when you go to a neurosurgeon, they’re looking at the brain and the spine, and they’re not going to really deal with the issues with the bones.”
Filling information gaps between Justin’s doctors has become part of Kimberly and Steven’s to-do list as caregivers.
“When you have somebody seeing that many doctors, you’ve got to communicate and coordinate. We’re lucky we do have all of his appointments at one hospital, which does help for the most part. But there are definitely things that we have to communicate between his primary physician and his geneticist.”
Fun is in order
For Kimberly and Steven, everything has its place. Just as Justin’s medical information is methodically stored in a filing cabinet in Steven’s home office, his toy collection is perfectly organized in a row of bins in the basement.
Justin enjoys playing with the toys he had as a child, so his mom and dad have kept them around for all these years. But chaos can easily ensue from having a lifelong collection of toys in the house. Knowing how much joy playtime brings to his son, Steven was happy to take on the challenge of keeping the toys in order.
Justin has toys from all different ages. He likes to play with wooden tracks, which he got when he was young. We have to keep those in one big bin and his electric trains in another bin. We’ve got all his toys from when he was little, and he plays with them all the time.
I love organizing his toys,” says Steven. “It’s definitely a huge challenge, but then again, being organized is a huge help with managing Justin’s disease and day-to-day life.
Playing with their son is one of the sweet things in life for Kimberly and Steven. It allows them to bond with Justin in a world built by him—a world where the key characters are Mom, Dad, and fun. Putting the toys away is also part of the game. This is how Kimberly explains it:
“When we’re putting things away together, we’re kind of being brought into his world, and he enjoys that. He’ll pick up something and I’ll say, ‘Oh, let’s put the blue train away,’ and he’s like, ‘Oh, do you like the blue train, Ma?’ So, it’s an opportunity for us to enter his world.”
Like any loving parents, Kimberly and Steven’s goal is to make sure Justin is as healthy and happy as possible. That’s what fuels the unwavering determination with which they keep important information and other parts of their home carefully organized. It’s good to remember that every family has their own style—but having a system that keeps all your ducks in a row can go a long way.
5 ways Kimberly and Steven stay organized
File physical records
It’s helpful to have a system for organizing physical files, including notes taken at appointments. These files can come in handy when details are needed that are not in the electronic records.
Take a hybrid approach
Digital files can be a good complement to paper records. They can save space and time spent on paperwork.
Keep track of doctor appointments
Calendars—whether digital or physical—are great tools for organizing and visualizing appointments and events. They’re especially helpful when seeing multiple doctors.
Categorize and label toys and electronics
Organizing toys and electronics in labeled bins makes them easier to find and put away. This is especially helpful for a child who has toys from all ages.
Make organizing part of the fun
Inviting family to help keep things labeled and organized can be a bonding experience—and even an opportunity for fun!
Tagged in: Parenthood, Caregiver, Medical information, Staying organized