It's so simple to be wise.  Just think of something stupid to say, and then don't say it.     Sam Levenson (1911-1980)

Monday, September 22, 2008

It's "Over" -- Now What?

A Family in Transition

When things come in waves, I'd like to believe it's not by chance.  More plausibly, it's a matter of suddenly paying attention to a person, feeling, event or idea that, until now, I let lie safely beyond my radar.  It took a long time for me to become attuned to the stage following treatment, usually less intense than the period during treatment, but often no less difficult.

Last week, two mothers of children had finished their treatments, independently approached me, wanting to talk.  This is a normal event in the hospital.  A central aspect of working with children with long-term, life-threatening illnesses includes getting to know the children's parents, who are their primary caretakers, the central figures in their lives.  Conversations with parents often focus on life outside the hospital, giving us a window into the part of their lives we rarely see.  

All too often, the only reason I ever have to visit a child's home is in a vain attempt to comfort the child's parents after she is gone.  Only then, and way too late, do I get a small glimpse into her real environment, the home she left behind to come to the hospital.  There, her siblings and cousins, her kitchen and family room, the place to which she constantly, urgently, begged to return.    How much longer do I have to be here?  When can I go home?  When?  

But here I am, focusing on the loss, while leaving behind the majority of children, the eighty percent who heal and move on.  

How can I explain the concept, when so many ways, there is no such thing as "moving on."   One conversation was with K's mother, an extremely organized, straightforward mother of ten. 

I thought, Here we are.  We've finished chemotherapy, finished with the operations.  K only needs to come to the hospital every once in awhile for her check-ups.  I just want to forget it all happened, go back to my regular schedule -- the laundry, cooking -- regular things.  But her brothers and sisters still want to hang out with other siblings of cancer patients, and I don't want them to.  

I want to move forward, but the strangest thing has happened:  I no longer have the patience I once did.  I don't want to just sit down and read my little boy a story at bedtime.  After all of this, you'd think I'd have learned to have even more patience, but I don't.  It's very frustrating.  Do you think I'm a bad mother?

I assured her that I do not think of her as a bad mother, because she's not. I think you're a normal mother who just went through an abnormal experience, I told her.  You want it to be over, finished, so you can go on to the next thing.  But it doesn't work that way.  Your children have chosen to be in the company of children who are like them, who can understand them the way no one else can.

The rest of our talk focused on her family's gradual transition back into "regular" life, which, in so many ways, will never exist for them.   We talked of how K must now shift away from being the center of the family's attention, back out to the periphery along with the rest.  How her brothers and sisters are clamoring for their mother's attention, making up for lost time, but she is occupied with processing her experience and no longer has all the patience required to deal with their every-day troubles.  How she herself goes from place to place, from duty to motherly duty, but she is isolated by what she has been through, by her thoughts of what could have been.  She interacts with others but remains apart.

K's mother:  Last night I went to my daughter's asifat horimI tried to concentrate, talk to the other mothers.  But I just couldn't.

ALN:  It just wasn't the same --   you now know something they don't know.  You've been through something they haven't, something they couldn't possibly understand. You know what it's like to have cancer hanging over your daughter's head, over her life.  Everything's different now.

K's mother:  Yes.


K's hair is growing back.  She remains a wonderful girl, beautiful, smiling, extremely popular and confident, a notably bright and creative student who will have no problem in school.  She spent part of the summer with a tutor, catching up on her math and computer skills.  Throughout her treatment, she approached everything with a directness that I envied.  Even her indirect, artistic modes of expression contained a straight-forward openness and optimism that impressed everyone around her.   

I give credit to her mother who is struggling to balance her own need to move on, with that of her children who, for now, are exactly where they need to be.

Keep the balance,



ProfK said...

I don't think there is a parent out there who has not thought to themselves, in the dark of the night, how would I make it if my child were c"v seriously ill. For those parents who actually do have such an ill child I can't even begin to imagine how they cope, how they balance family needs with the need to "put this all behind me." Thank you for your insights.

mother in israel said...

Beautiful post.

rickismom said...

When the unussual happens, whether a sick child, or a special needs one, there is no going back. One eventually will get into a routine, but the knowledge and attitudes gained, stick with you. (And this is not a bad thing.)
I know that after hospitilizations of Ricki (short), I wanted to "go back to normal", but it TAKES TIME. During the time of the hospitalization, one is too busy "swimming" (so as not to sink). After coming home you have to process it....

Baila said...

I very much relate to this beautiful post. My daughter had an obsession with Camp Simcha and I was very uncomfortable with her, two years after recovery wanting, and needing to go back to camp. I didn't let her know my feelings--how could I? If this is what she needed, I couldn't prevent her from going. But this summer she came home from camp saying it was amazing as always, but she doesn't feel the need to go back until she can go as a counselor (beezrat Hashem).

So I guess the children process their whole experience in their own time frame....