I used to be able to watch those pleas on television for money to feed the starving children in Africa and and be completely devoid of any emotion. You know those commercials, children with distended bellies, flies taking up residence in their eyes and some C-list celebrity trying to guilt you into donating “just a dollar a day.” Barely made an emotional dent. And I have to admit that I did feel just a wee bit guilty for not my lack of empathy, but not enough guilt to distract me from whatever I was watching before that damn commercial interrupted things.
But then we had kids.
Somehow the mere presence of these cuddly, screaming, adorable, sleeping depriving entities unlocked the emotions stashed in the recesses of my brain. Any TV show, movie, or commercial that depicted a child in any sort of distress induced that salty moisture in my eyes that I heretofore had hardly ever experienced.
As any parent will attest, the absolute worst is when your own child is ill or injured. The slightest fever could induce completely irrational fears of childhood leukemia. And don’t even mention the apprehension of flesh-eating bacteria that was induced anytime any sort of skin redness appeared.
Luckily, both of our children made it through the childhood and adolescence relatively physically and emotionally unscathed. Despite our best efforts, it did not appear that we caused and long-lasting damage to either of them. Our daughter graduated from the top fashion school in the country and and secured the job of her dreams in New York City. Our son was off to college as a pre-med with a high ranking GPA. While our arms were a little sore from patting ourselves on the back, we were just beginning to relish and enjoy our time.
And then it happened. February 23, 2013. Our daughter was at an ER in New York with searing pain in her neck and shoulders. Over the next several months, the pain migrated to her back, sides and hips. To make a very long story short, Erica had to quit her job and return home to live with us, exactly what a 24-year old had in mind for a career path. Rather than parties with the fashion gliterrari, she now got to experience leftover spaghetti and meatballs with parents. After months of poking and prodding, Erica was diagnosed with myofascial pain resulting from a genetic disorder, Ehler-Danlos Syndrome.
The worst was those nights when I had to witness Erica literally writhing in pain for hours. At that point, no medication or therapy offered any significant relief. This was, to me, a parent’s worst nightmare. Yes, I know her condition was not life-threatening. She is not confined to a wheelchair and her future still looks bright. These thoughts, though, provided little solace when she was coping with an undiagnosed condition over which we had little control.
As parents, Erica’s condition has provided us with some hard learned life lessons. We had to both learn how to be supportive and to cope with our collective changed circumstances. We wished we could have been more enlightened earlier in the process. In that vein, I would like to share what we learned as caregivers, with full recognition that there are exceptions to everything and what I suggest may not be applicable to all. The additional caveat is that Erica had resources that many lacked, such as generally supportive parents and good insurance. With that said, here is just a short list of what we learned.
1. The Pain is Real.
She’s not faking it. She’s not being dramatic. She’s not simply trying to get attention. She does want to get better. And, most important, it’s not all in her head.
2. Distraction Can be the Best Pain Relief
Most traditional pain medications, at best, did nothing, or at worst, had significant side effects that made Erica feel even worse. What did seem to provide some relief was just sitting with her and watching TV or looking at stupid videos on the internet. Netflix and Amazon were invaluable.
3. The Illness does not Define the Person
Erica desperately did not want to be known as the “chronic pain person.”The problem is that when dealing with a medical issue as all-encompassing as what she was experiencing, it is easy to let to her condition subsume conversation on any other topics. It dominated every interaction, including interactions between my wife and myself. We eventually learned to remind ourselves that we were the same individuals we were before the onset of Erica’s illness, with the same interests and eccentricities. The three of us made a conscious decision to talk about topics other than Erica’s affliction. My wife and I actually would agree not to talk about anything related to Erica’s condition while we went on walks or had dinners out.
4. Avoid Caregiver Fatigue
Recognize your limitations.There is no doubt that caregiving can be more than a full-time job. You can not always take a break when you would like, but you must take one when you can. Stress reduces your effectiveness as a caregiver. In addition, the unspoken truth is that stress can lead to resentment, which in turn leads to guilt. Certainly having a co-caregiver helps.Try to learn to recognize the onset of caregiver fatigue and take the necessary steps. It may be an afternoon nap or time away. Erica and I learned to recognize when my wife was bordering on stress overload. At those times we simply sent her away for the weekend. I recognize this may not be an option for everyone, but you must learn what is realistic and doable for you, And don’t feel guilty about taking a break. It will benefit everyone.
5. Nurture Your own Relationships
Caring for a child with a chronic condition can stress a relationship with a partner. When possible take time off together. As much as you feel to the contrary, you don’t have to include your child in every activity.
6. Timing is Everything
While your child is in the midst of a serious pain episode is not the time to try to resolve serious issues. It is not beneficial to discuss treatment options, simmering personal disputes, or future life choices in the midst of severe pain. When your child is suffering, her focus is not what job options she should pursue. Someone in distress does not have the desire, ability or inclination to deal with major issues. We have found that discussions on “big” issues were consistently unproductive at these times.
7. Adjust Expectations
Your child may not be able to do everything you think she should. Forcing someone to do something when they’re experiencing significant pain does not constitute good parental discipline. It merely exacerbates the pain. While there may have been times that I felt like I was being manipulated, I eventually that learned providing reasonable assistance was not synonymous with coddling. Instead, it helped Erica’s recovery and generally enabled her to take on more activity at a later time. While I am disappointed when Erica has to cancel a gym session, I realized that she is the best judge of her body. She has learned the hard way what she can do and when she can do it without adverse effects.
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