Staying Grounded in Reality Laced with Hope

I am working on my master’s degree in Family Life Education. As I learn new things about families, parenting, and raising children with health issues, I’ll share them with you.

In our textbook, “The Expanded family Life Cycle” by McGoldrick, Carter and Garcia-Preto, there was a section that talked about families lacking a time perspective when having problems. “They tend to magnify the present moment and become overwhelmed and immobilized by intense feelings. Or they become fixated on a moment from the past or the future that they dread or long for. They lose awareness that life means motion from the past into the future with family relationships continually transforming.”

Having worked with families dealing with a child’s chronic illness, and in fact experiencing this myself, I really resonated with this statement. The newly diagnosed stage is overwhelming and shocking, bringing on the stages of grief. Interesting new research suggests parents also experience post traumatic stress disorder symptoms in varying degrees. Many parents (and other extended family members, of course) become overwhelmed and immobilized for a time at least. But some can be overwhelmed to the point of denial about the diagnosis (especially with newborn screening where the child’s illness might not be so obvious yet) and refusal (or inability) to care properly for the child’s medical needs.

It’s interesting to note, in the context of the Family Life Cycle, that extended family members can have very unhealthy responses to the diagnosis that set into motion “negative processes” including serious family dysfunction- even in families that were operating relatively well prior to the diagnosis.

As the newly diagnosed stage “wears off” and family members redefine and accept their “new normal” (see “Welcome to Holland” by Emily Perl Kingsley), I think we (and I am speaking for myself here but see it in many others) can become fixated on a moment from the past- whether it’s the diagnosis moment especially if traumatic or perhaps even look with longing to a simpler time before the child was affected by the illness.

Or, we can become fixated on a future we dread or long for. For me, having two children with cystic fibrosis (CF), a life-shortening illness (median life expectancy of 40), I have to work very hard at staying grounded and balanced in reality laced with hope.

I can too easily become fixated on the “not-so-bright future” of my children’s possible death or progression of their disease. This fear manifests itself in very tangible ways. Parents of children with CF- and all other serious medical issues- tend to be highly over-protective or, as I call it, turbo charged helicopters. This impacts and retards the normal social and emotional development of the child. See the movie “The Secret Garden” for an example of this.

Or, I can become too fixated in the hope of a cure or new treatments that will prolong life and delay progression. When such things don’t come quickly enough, it’s easy to lose hope. I have seen this happen often within the CF community and experienced a great letdown myself when a new drug in trial did not have the positive affects that we all had hoped for.

It takes conscious awareness and diligence to stay in a “healthy” place. And if I am in a healthy place, my children will be as well for I am their greatest teacher and role model. This is why I am so passionate about educating this population of families. And myself. :-)

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Lisa C. Greene is a national public speaker, writer, certified parent coach, and mother of two children with cystic fibrosis. She is also the co-author with Foster Cline MD of the award-winning Love and Logic book “Parenting Children with Health Issues.” For more information, see www.ParentingChildrenWithHealthIssues.com.

For more Tips for CF Parents, visit Lisa’s website at www.TipsForCFParents.com.