Family Views – by Michelle Hensman

I like to think of the parenting journey like a road trip across the country. There are major highways and interstates where the majority of us traverse. We all inevitably take a wrong turn and have to turn around or get lost and require directions (this is most difficult for dads—wink!). Some parents have car trouble or even break down in an unfamiliar/unpleasant neighborhood; where a good, trustworthy mechanic can be hard to find. More often than not there are traffic delays where it seems we’re just not getting anywhere. And occasionally parents happen upon a detour; some parents may know how to navigate around the disruption without delay, while others may get lost in the process.

I liken childhood disease/illness to the detour metaphor. Nine times out of ten you don’t expect it and therefore didn’t plan for it. You certainly would have avoided it if you possibly could; but there you are, forced to alter your course one way or another. Most of the time the detour is short, noninvasive and getting back on course is simple. Other times it’s like driving from NY to LA and you just learned the entire length of I-70 is under construction. The GPS suggests I-40 as an alternative; a bit out of the way but you will still get to the final destination. So you set a course to Durham, NC where you learn that the entire length of I-40 is being repaved (your tax dollars hard at work!). Now what do you do? Here’s what you can’t do: you can’t go back where you came from or give up and settle in No Hope Town, USA .

As parents we are the pilots/navigators of the journey; therefore those of us with children battling disease progress through a myriad of emotions. Sometimes we blame ourselves for the diagnosis, feel guilty for dismissing early symptoms, other times we are absolutely confident our child will beat the disease and occasionally anguish as we try to cope with the possibility of our little darling living a life with disease…or worse. Despite bad news or despairing statistics we try to stay positive for everyone else, busy ourselves by keeping up with the latest research and investing in as much natural supplements and treatments that our budget allows. We work hard at keeping our worst fears at bay for as long as we possibly can and confronting them only when the walls crack and only when we’re alone.

Back to the question, what do you do? All you can do is pray hard, cry alone, love deeply and keep on truckin’. For the children, coming to terms with an illness or disease that affects them daily for an extensive amount of time is like a roller coaster ride across the country as opposed to a road trip. And it can be exhilarating and nauseating at the same time.

The best advice I can give as a parent with a child fighting a disease is as follows: Educate your family and close friends whom you know love your child on the various characteristics of the disease; you need a good support system. Encourage children with disease or disabilities to go after their dreams and instill drive, hope and ambition even when their condition contradicts their dreams. If necessary, when the time is right and the veracity of their disease is clear, guide them towards alternatives that can be equally fulfilling. Help your child to understand aspects of their illness that they can control and what is beyond them. Allow them to be angry and occasionally just listen to their concerns without a positive, uplifting rebuttal; it can sometimes feel patronizing. Strive to help your child to understand the world around them through their lens and their role in it; teach them to be the best they can be with the talents and gifts they have been given. Finally, keep in mind that statistics are averages, if there are outliers your child could be one of them.

Posted October 4, 2013