Raising an ambitious, precocious young pain warrior.
In the beginning, Laurie and Shawn Dickens were hopeful their daughter Melanie would overcome her pain disorder. They learned as much as they could about reflex sympathetic dystrophy/complex regional pain syndrome (RSD/CRPS) so they could help Melanie understand the pain cycle. Researching pediatric RSD cases, they consulted doctors and therapists, all of whom preached the same message: quick diagnosis and intensive physical therapy were key to recovery.
Advised that regaining function in her leg was imperative to resolve her pain, her parents implored her to not ignore the pain. They wanted Melanie to use her foot as much as possible in order for her brain to stop sending pain signals to her body.
“We explained it wasn’t going to be easy, and it would be weeks of hard work before she could be pain-free,” says Laurie. “As her parents, we now regret ever using the term ‘pain-free,’ since it wasn’t obtainable in her case and led to a lot of disappointment.”
A diligent patient, but less-than-optimal results
Melanie did exactly what she was told. She attended physical therapy appointments daily, vigilantly doing her home exercises and desensitization protocols. While she rarely complained, the pain and hypersensitivity remained.
When Melanie did regain her ability to walk, it was still impossible for her to return to her normal life attending school. She continued to face additional symptoms and limitations. Her parents sought out other treatments that also failed to bring relief. Ketamine infusions reduced the pain, but Melanie was far from the pain-free child Laurie and Shawn had been hoping for.
Melanie’s typical happy demeanor began to change. With a heightened emotional state, loss of interest in enjoyed activities, erratic sleep patterns, and poor eating, she cried a lot. During one visit to the Magic Kingdom, she even asked to go home an hour after arriving at the park because the pain was too much.
This was a 10-year old who loved Disney! She was suffering so much that even being in her favorite place on earth didn’t make her feel any better. It was at that moment they realized pain was very likely going to be a permanent part of their daughter’s life . . . and the Melanie they knew seemed to be slipping away.
Parenting through the fear
It was all very scary for them. Googling the disease was a big mistake, says Laurie: “It led to some daunting and conflicting information. We didn’t have the wherewithal to know where to search and to determine what sites were credible, like we do now.”
Pain is a rollercoaster with ups and downs. The Dickens’ have learned to manage these twists and turns through distraction therapy. They also have a bag of “tricks” (divined through much trial and error) specific to Melanie’s needs that help her get through the roughest of minutes, hours, or days. Humor and laughter have become a must in their household; it has been vital for them to reduce stress and survive.
Creating a support network
Early on, Laurie and Shawn found the Reflex Sympathetic Dystrophy Syndrome Association (RSDSA) to be a helpful resource for better understanding the disease and learning about potential treatment options. Finding an online support group of parents raising children with RSD/CRPS was invaluable; this group was a network for them so they could connect with, lean on, and learn from others in similar circumstances. It is therapeutic for Laurie to offer assistance to new members of the group.
G-PACT (Gastroparesis Patient Association for Cures and Treatment), TCAPP (The Coalition Against Pediatric Pain), and Dysautonomia International have been great outlets of support as well. For Shawn and Laurie, it has been powerful to find a community that understands their challenges while embracing the small-yet-large-in-meaning triumphs with them.
This is why they both encourage parents entering this realm to network with others, research, trust their gut, and remain positive. “If you do not feel you are getting adequate care from your health care provider, find another one. The new ‘normal’ is truly a rollercoaster and, as a parent, you need to help guide your child to focus on the positives,” says Shawn. “Having chronic pain or an illness does not have to take away one’s ability to make a difference and fulfill their dreams.”
Throughout Melanie’s journey, Laurie and Shawn have realized how much we all take for granted and how important it is to live life one day at a time. They learned to embrace the moments when Melanie truly overcomes her pain in order to accomplish a goal, like participating in her Crazy Sock Walk or going to a school dance. While they know she will suffer the consequences later, they are prepared to help her deal with subsequent pain. Most importantly, they are proud of their daughter for choosing to participate in such activities, knowing full well the activities will cause her to suffer more pain.
Wishes for the world
One wish Laurie and Shawn have is for people to understand the invisible nature of chronic pain and illness: the ever-changing state of baseline (by the hour, week, month, or year) and the mere fact that distraction is not always easy or enough.
They wish others recognized pain as a real condition. Just because Melanie may appear to be having a “good day” doesn’t mean she is fine. Instead, it is a sign of the strength and courage of their little girl whose desire to be a “normal” teenager is outweighing the constant pain she endures.
“There is no worse feeling for a parent than to see your child suffering and know there isn’t anything you can do to make her better,” says Laurie. “We embrace the good moments and take nothing for granted anymore. We also put on our own masks so Melanie doesn’t see the ‘pain’ we endure watching our child struggle to do things she used to take for granted.”
Making room for the “new normal”
Laurie and Shawn’s lives inevitably changed through caring for Melanie’s health needs. The family has altered activities to suit her abilities within her “new normal.” Melanie used to love going to the beach, but the sand and wind cause unpleasant sensory experiences—so while this used to be one of her regular pastimes, they save going to the beach for vacations. The same is true for trips to Disney World. Instead of spending a whole day at the park, they go for a few hours.
They also keep in mind the needs of their two other children. Like Laurie and Shawn, Melanie’s siblings also struggle through many of the same issues that come with the day-to-day pain. “Initially, Melanie’s needs were the focus. Yet we quickly understood that wasn’t fair or right. We had to find a balance,” says Laurie.
It has been a priority for them to ensure all three of their children receive the attention they need. Thankfully, Melanie’s older brother and sister have been amazing, offering her the support and love only a sibling can share. They include her in activities, raise awareness about chronic conditions, and shower her with encouragement on dark days.
Taking care of the caregivers
It’s sometimes difficult for Laurie and Shawn to take care of their own needs and health. Says Laurie: “A parent’s natural inclination is to put their children’s needs above their own, and it becomes 10-fold in a situation involving a sick child. Time and finances were overburdened by chronic health management and necessary care for our other kids. We would feel guilty if we did anything for ourselves.”
With time, they both realized the toll of stress. They now make a point to rest, attend personal appointments when needed, and spend time alone as a couple whenever possible. “We also try not to hold ourselves to an unobtainable standard. This means we stopped comparing our lives to others. Life is different now, and that’s okay,” says Laurie.
Melanie uses creativity to adapt and improvise and, thus, overcome obstacles. Repeatedly telling her family she will not give up, she continues to find a way to do what she loves and dreams despite her pain. Her ability to cope with such grace and strength is something we all should strive to attain.
“Melanie’s attitude and resiliency have given us hope,” says Laurie. “At a young age, she has proven she is capable of finding a way through life’s many challenges. She’s already learned that believing in herself is far more important than what others say or think, and she’s chosen to look for the positive in all of the adversity. How many adults can say they have achieved the same?”
Gastroparesis Patient Association for Cures and Treatment (G-PACT) – g-pact.org
The Coalition Against Pediatric Pain (TCAPP) – tcapp.org
Dysautonomia International – dysautonomiainternational.org
Reflex Sympathetic Dystrophy Syndrome Association (RSDSA) – rsds.org