Raising a fighter, they won’t give up on healing…
Donna and Bob Sullivan know all too well the challenges and hardships faced by families with chronically ill children. Since 2010, these parents to three children have been navigating the medical system for their oldest daughter, Michaela, who has Ehlers-Danlos Syndrome (EDS). So when their son Aidan had a snowboarding accident in early 2014, Donna and Bob were proactive in seeking care.
Weeks after the incident, Aidan’s parents noticed his leg had turned dark, and his hypersensitivity to touch was making it difficult to put pants on. Going to school was taking everything out of him, and sleep became impossible. He went from being a very active, athletic person to someone who had difficulty with simple everyday movements such as standing up, getting dressed, getting into a car or going up stairs.
Seeking specialized support
They took Aidan to see specialists in Boston, where he began a CRPS pain program using nerve blocks, desensitization, physical therapy and psychological support. The goal was to keep the leg moving while also calming (or desensitizing) his leg to the pain signals that were misfiring.
Yet after Aidan’s second inpatient hospital admission for a nerve block and grueling daily physical therapy and desensitization, his pain was increasing. The temperature in his leg also remained ice cold. Donna and Bob knew things were not going well.
For nearly two years, his parents had already been immersed in the pediatric pain world, so sadly, they understand the roadblocks to help and answers. With a family history of EDS, they wondered if Aidan’s joints were subluxing or moving more than they should. This possibility made his case complex.
At times, Bob and Donna felt physicians didn’t know how to help Aidan, or worse, were not willing to look past the “established protocol” for CRPS.
“As a parent, you want to help your child when they are sick or hurting,” says Donna. “To not be able to stop his pain was devastating.”
Not letting emotions get the best of them
Donna and Bob have felt a myriad of emotions including fear, anger, sadness, helplessness, frustration and gratitude while caring for Aidan. Often, they find themselves surviving hour-by-hour or day-by-day. While they to try to set some kind of schedule each day to remain productive, and find fun or distraction, they have learned how to be flexible.
With so many unknowns, Donna and Bob make sure to maximize Aidan’s good days while accepting that a high-pain day means more time at home. Open communication has been helpful for the family; being able to discuss the good, the bad and the ugly has allowed Aidan to understand what is happening and know he is not alone. They continue to work hard to stay positive for Aidan while also finding new ways to redefine their normal to keep the whole family moving forward.
“It may sound cliché, but my husband and I have a new perspective on what is truly important in this world,” says Donna. “Watching your child suffer in pain and missing out on a normal childhood never gets any easier. But we work really hard to focus on all the good things we do have, and how blessed we are to have them. Any day that is close to normal, we embrace.”
Support fights isolation
Caring for sick children can be overwhelming. It is easy to become isolated because illness forces you to withdraw from many social interactions. Donna and Bob really appreciate when someone visits (providing Aidan a distraction from pain), offers to help with Aidan’s siblings, or simply sends a thoughtful text message. Knowing that others care goes a long way toward making Donna and Bob feel less alone.
The Sullivans feel fortunate to have dedicated and experienced physicians that have stuck by Aidan from the beginning, even when things don’t go well. They are also grateful to the physicians and rehabilitation specialists at Spaulding Rehab, who helped when Aidan was at his worst. Donna and Bob also appreciate the support of immediate family (especially Donna’s cousin, Amy) and close friends.
Finding an online support group of other moms whose kids live with CRPS and EDS has been a lifesaver to Donna; the group helps her and Bob be better advocates for Aidan’s health and school needs. “We share information and we’re there for each other, especially when someone is in crisis,” Donna explains. “They have sent care packages and provided us with medical research information that has helped us tremendously.” The Coalition Against Pediatric Pain (TCAPP) was a huge resource early on as well.
From one parent to another:
The life of a parent with a sick child can be lonesome, filled with worry, fear and questions. Through their experiences, Donna and Bob have gained insights that may help comfort other parents:
- Always remember, you know your child best. If a physician or treatment is not working, do not hesitate to seek a second, or even fourth, opinion.
- Connect with organizations or groups to help steer you to experienced doctors or offer you additional resources. The Sullivans like the Reflex Sympathetic Dystrophy Syndrome Association (RSDSA) and RSD Hope.
- Join an online support group for information, but keep in mind that every child is different. What works for one may not work for another.
- Stay organized and keep a timeline so you can help physicians understand your child’s background.
- Do your best to keep outside relationships intact by hosting play dates, if possible, so your child is less isolated.
- Never, ever give up.
An enduring spirit
Throughout Aidan’s journey, “I keep telling him to hang in there and not to give up, that we are going to find his path,” says Donna. Aidan once asked his parents why doctors weren’t able to help him. It was a heartbreaking moment as Donna tried to explain there are no clear treatment paths for CRPS: “That’s a terrible thing for an adult to understand in these days of modern medicine, and it’s even harder for a child to comprehend.”
While Donna left her career to become a fulltime caregiver, she wouldn’t have it any other way. Yes, there are things she misses about her profession (as well as her previous exercise routine), but her kids are her heart and soul.
“I never want them to think I am sacrificing my life for them. I would gladly do anything for them. We are all in this together.” As a team, she and Bob work to find a balance between the needs of Aidan and their daughters, as well as their own. They know that good self-care allows them to be better parents and caregivers.
Aidan has recently undergone surgery to address nerve damage, and is determined to continue this fight until he is able to walk again. Despite daily uncertainties and setbacks, the family has hope. And they are in awe of their son, who refuses to let CRPS define him. Even with extreme pain, Aidan keeps attending physical therapy, seeing new specialists and undergoing procedures in hopes of getting better. He pushes forward with humor and determination. Nothing is going to derail Aidan from reaching his dreams.
“We are so incredibly proud of the strength, courage and perseverance Aidan displays each day,” says Donna. “He has more perspective and grace than many adults, and we know he will grow to be a kind and compassionate man because of all that he has endured.”