Post Hospital

Friday by Rieshy
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As usual, after my son has a hospitalization triggered by his Fatty Acid Oxidation Disorder, I process things in writing and by doing a little extra research.  It's how I'm built.

I found Chronic Illness and Disability Through the Life Span, edited by Eisenberg, Sutkin and Jansen and perused it.  This startling insight made by a team of researchers made me laugh:

"Since parents of chronically ill children must cope with extraordinarily difficult life circumstances including compromised finances, restrictions of career mobility and the demands of treatment regimes, it is not surprising that they find the experience stressful.  Subjective feelings of depression and worry are common features of parental response to chronic illness."

Who would've thunk it?

As a word junky I was interested to read a description by researcher Prugh and Eckhardt, including handy new labels, for something my husband and I had noticed in our son's behavior every time he's "post-hospital".  They categorized response to illness into three, "sequential phases of impact, recoil and restitution."

"Impact encompasses the behavioral regression, bodily preoccupation, needs for nurturance, and massive denial of future outcome which accompany fears of death or annihilation of the self."  We've seen this time and time again with every post-hospital experience in the form of nightmares, the fear of sleeping alone, and the avoidance of playing alone.  This is when he's asked us questions like, "Mom, if a little kid is about to die and he cries out really loud for God to save him, God will save him- right?"

"Lessening of the child's denial and regressive self preoccupation mourning for the loss of self and attempts to reestablish control over his or her environment mark the recoil phase."  In our son this phase is evident when our son suddenly acts impatient when he sees that he's being treated with extra vigilance, or when he begins joking about something that happened in the hospital.

"Finally restitution brings increasing acceptance of the illness outcome, altered self-image and the implications for an uncertain future. "  This is the phase when we get questions like, "When will big brother have to start taking medicine like me?  What would happen if I didn't take my medicine?"

The special thing about chronic illness is that a child goes through these stages every stinking time their illness goes from chronic to acute.  With each flare up the child is older so their journey through the stages looks different each time, different to the observer and different to the child.  

It's dizzying.  I just flunked the "What would happen if I didn't take my medicine?" question by hedging so much that my son smelled deception.  Of course it didn't help that the question was asked in a crowded van while I was negotiating rush hour traffic after a long school day, nor did it help that my 5 year old immediately yelled out, "You would DIE!" as his succinct answer to his brother's question before I had time to say anything.

Which leads me to another quote from Chronic Illness and Disability... , "Our experience indicates that siblings also can be significant sources of support for the chronically ill child over the entire course of the illness but only if they are informed and involved."



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2 comments:

Melanie said...

There is no hedging when siblings are involved! Blessings to you and yours. Love you all!

JoAnn Hallum said...

Well, perhaps between the two of you there was a healthy balance?
I think as long as everyone holds onto their sense of humor things will not be completely dark. Praying for you.

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