The secret to surviving—thriving—is acceptance
Aurora and Steve Richards have spent eight years watching their daughter, Karen, live with pain. They have dealt with depression, anger, and an intense desire to fight to make their sweet girl better. But what they have learned through the journey is that they need to accept it.
“Without that acceptance, you forget to live your life,” says Aurora. “Now we have settled on acceptance and living the best we can. We continue to fight for treatment and a better quality of life, but our focus on a cure is secondary.”
After Karen’s first bout of reflex sympathetic dystrophy/ complex regional pain syndrome (RSD/CRPS) went into remission, her parents were hopeful that life would return to a typical routine. But then Karen’s shoulder started dislocating. They discovered after her second episode of RSD/CRPS that she also had Ehlers-Danlos Syndrome (EDS).
Aurora and Steve had to come to terms with a harsh reality: with her combination of diseases, Karen would most likely always live with some type of constant pain.
Strength and courage in the face of suffering
Karen began physical therapy to help with the RSD/CRPS, which soon became an intense treatment—but it wasn’t enough. With a co-morbidity of diseases that include RSD/CRPS, EDS, dysautonomia and neuroinflammation, Karen’s pain constantly changes—so modifying therapies must be an everyday occurrence. She relies on medications, surgeries and sometimes, short infusions of ketamine.
Like many children with pain and chronic invisible illnesses, Karen is extremely strong. In fact, her strength can be detrimental as her pride pushes her to hide the agony and struggle from almost everyone.
“I always know when she is in pain because she becomes irritable,” says Aurora. “Instead of crying, Karen tends to fight it. She can become short-tempered, but I understand. She is—and will always be—my hero.”
Overnight, their world became consumed with therapists, doctor appointments, medications and vitamins, and fighting disabilities while living with endless pain.
While they strived to maintain a sense of what society considered “everyday normal”—when Karen could get up, go to school, play in the yard or just have a smile on her face—circumstances made that difficult.
Networking is essential
That is why as caregivers, Aurora and Steve encourage the public to remember to stay in touch with families in similar positions.
“It is easy for us to come and go in daily life situations. We do not mean to be isolating; we just get caught up in the everyday management of pain so we aren’t always present,” Aurora explains. “However, the more we can stay in touch, the better we all do. So never be afraid to visit, call on us, or just offer to be an ear. Help us not become more isolated.”
There is not one magic pill or program to ease a child’s pain, and it is easy to lose your way looking for it. “What we have learned,” says Aurora, “is how to manage pain so we can continue to make great family memories. We still have hope for better options in the future for Karen, but we are no longer stuck and unable to move forward until that occurs.”
For parents with a child with pain, a network can help navigate the medical journey. And accepting support is important. Aurora was lucky to find a couple moms who were going through similar illnesses with their kids. Since then, that network has expanded, and it is the best support she could ask for.
Reaching out to professional organizations
Support groups and other organizations can provide great resources, information and community. At the beginning, Aurora and Steve turned to the Reflex Sympathetic Dystrophy Syndrome Association (RSDSA) for help in learning more about their daughter’s condition, as well as with finding physicians.
They then turned to the Ehlers-Danlos National Foundation (EDNF) to locate specialists when Karen was diagnosed with EDS. In the end, Aurora helped form The Coalition Against Pediatric Pain (TCAPP) to assist other parents, because there was not a single group that took all conditions into account and focused specifically on pediatric pain.
Eight years into the journey, Karen’s parents have come to accept that the roller coaster of emotions—as well as good and bad days—is their “new normal.” They now have faith and patience during a downswing, because they know an upswing is coming.
Through their daughter, Aurora and Steve have learned how precious life is and the importance of remaining strong. They also discovered the need to stand up for what they believe in, and that they must continually be an advocate for their daughter’s health.
Always offering support
Despite their resilient attitude, watching their child suffer is incredibly difficult. A heart wrenching moment for Aurora came during a conversation with Karen about why her daughter’s favorite number was seven: because that was the last year of her life before pain.
Telling their daughter they can’t solve her pain or medical problems is one of the hardest things to say. “I wish we had answers to all her ailments,” says Aurora, “but no one has those answers yet. This is why we focus so much on living, laughing and loving while we look for better modalities to help her.” But her parents will never give up the search to find ways to make Karen’s life the best it possibly can be.
In Karen’s own words, “Life is to be lived.” And that is what her parents are helping her do. As a family, they support her dreams, and join her in fighting the pain. They know their daughter is not alone in this struggle. Karen’s indomitable spirit, tenacity and strength give them hope. “If she can come out on top after everything she has been through, then there is always hope,” says Aurora. “She is our hero.”
The Coalition Against Pediatric Pain (TCAPP) – www.tcapp.org
Ehlers-Danlos National Foundation (EDNF) – www.ednf.org
Reflex Sympathetic Dystrophy Syndrome Association (RSDSA) – www.rsds.org