Parents of kids with special needs deal with it every single day. Not only our children's pain, which is what springs to mind for most moms and dads when the topic arises.
But also our own chronic pain.
We all experience it. Our pain can be caused by the physical demands of caregiving. It can be mental and emotional pain exacted by sleep deprivation, the trauma of seeing our children suffer, or an unrelenting string of diagnoses and treatments. For Christians, chronic pain can be spiritual–sure, God says he's always with us and that children are precious to him, but circumstances make us doubt his promises.
We ignore the pain and push it down.
But it's still there. Bubbling below the surface and erupting at the most inconvenient times. Like when the receptionist at the doctor's office can't get you in at the time you requested, and you burst into tears. Or when your spouse makes an innocent comment about supper, and you rip into him with the ferocity of a Bengal tiger. Or when your child whines after being told to put away her toys, and you respond with a phrase you vowed you would never say when you became a parent. That's when you realize it's time to do something about your own pain.
I've been pondering and praying about that question for years. Not only concerning my own pain, but also that of other hurting parents who have shared their stories. Not too long ago God provided an answer, at least in part, during a conference workshop. The speaker was Dr. Stefan Friedrichsdorf, who is the medical director at the Department of Pain Medicine, Palliative Care & Integrative Medicine for the Children’s Hospitals and Clinics of Minnesota. Part of his workshop addressed treating chronic physical pain in children and adolescence.
Something he said has been niggling at my brain ever since.
"Treating chronic pain is hard work," he said. "And the first step is to normalize life." For children and teens, he explained, that means getting off the couch–even while the pain is still present and untreated–and participating in these normal teen life activities:
- Sports/Exercise: completing exercises those prescribed by a physical therapist.
- Sleep hygiene: re-establishing normal sleep patterns.
- Social: having daily fun with friends.
- School: attending school daily or following a re-entry plan.
Teens, Friedrichsdorf said, need to start participating in the hard work of normalizing first so other chronic pain-relieving practices can be implemented. Without the hard work, passive practices like massage, acupuncture, and medication, as well as participatory treatments such as mental health and family therapy will not be highly effective.
The last line is the nigglemeister.
Because what the good doctor said about the treatment of chronic pain in children and adolescents has profound implications for treating chronic pain in parents of kids with special needs, also. The first step in addressing the physical, mental and emotional, or spiritual pain we live with day in and day out as parents is to engage in the hard work of normalizing life.
Which sounds totally overwhelming. Impossible even.
But from experience, I also know this step is absolutely necessary. Because during the first four years of our son's life, when almost anything that can go wrong did, doing things that allowed me to engage in normal life was what kept me sane. Things like doing exercises for my back in the morning. Turning the baby over to my husband, who could conk out in the recliner while jiggling our fussy boy and wake refreshed in the morning, while I slept the night away in our bed. Accepting dinner invitations from friends who made us laugh. Going to work on days when no doctor's appointments, hospitalizations, or outpatient procedures were scheduled–because teaching school was so engrossing, I couldn't obsess about our child's health.
From experience, I would add one more item to the good doctor's list.
Find a godly believer who will help you address your spiritual pain. Someone who knows that for parents of kids with special needs, the thought of normalizing life can seem overwhelming. Someone who will listen to your doubts and questions without judgment. Someone who lives with similar pain and still considers God to be true and faithful. Someone who can point you to Jesus when you can't find him. Someone who has tasted the Lord and knows that he is good even when we hurt. Someone who can assure us that one day our chronic pain and our children's pain will be no more because...
...He will wipe away every tear from our eyes;
and there will no longer be any death;
there will no longer be any mourning, or crying, or pain;
the first things have passed away.
The Christian friends who gathered around my husband and me, who showed us the goodness of God, both in his Word and by their actions, soothed our chronic spiritual pain. They led us back to spiritual health, and for their kindness we have been grateful ever since.
"Friendship ... is born at the moment when one man says to another,
"What! You too?
I thought that no one but myself . . .”
~ C.S. Lewis
Jolene Philo is the author of the Different Dream series for parents of kids with special needs, as well as three other books about caregiving and special needs. Her latest book, Does My Child Have PTSD? was released in October of 2015. She speaks at parenting and special needs conferences across the country and hosts Different Dream Living, a blog for special needs families and other caregivers. You can connect also connect with Jolene via Facebook, Pinterest, or on Twitter at @jolenephilo.