I want to wear blue wings and soar

above the screaming

tantrums of today

I will take you with me

(hold you)

as we gaze down

upon whispery earth

at tiny beings

scuffling about

checking their clocks

and bank accounts

Ah,

the life of a bird

who does not love so much

that it hurts

 

 --LWK

 

 

 

Blog Index

 

You are my 'son' shine 

my little 'son' shine;

you make me happy

when skies are grey

You'll never know dear,

how much I love you

please don't take

my 'son' shine away

 

I wish I was fine

It’s like my brain

is doing a freakin’ crime....

 

From a rap by Coby, age 11

Sunday
Nov052017

Adversity, Illness, Family & Hope

I recently held separate parent teacher conferences with divorced parents of a child in my class. One of the parents expressed anguish over the drama that had played out in the last few years, saying that the daughter even had her own lawyer for part of the time. 

This ignited my own memories, although I didn't share them. My parents had an acrimonious divorce. My mother blamed me for her "financial loss" as she saw it because I was 18 and contrary to my people-pleasing personality, would not go to court on her behalf. Bitter years followed, which took much work for me to overcome. 

Overcome them I did. I figured that I had paid back the universe. I had dealt with more than my portion of despicable behaviors and anguish. Friends had not known such difficult times; I saw that first-hand when I was invited into their warm, calm homes and treated ever so kindly. Hence, when, years later, my son first became sick, I wondered, as many of us parents do--why me? Haven't I endured enough? Haven't I already paid my dues?

This child in my class has suffered, yet to know her, to see her from the outside, one would never know. She's sweet, mellow, has kind friends, tries her best in school. She's likeable and well-liked. Her parents both deeply care for her although they continue to dislike each other. Why her?

But then again, I thought, why not her? Perhaps she will be stronger for all this than the adult she would have grown into someday. Perhaps she will be stronger than the classmates orbiting about her. Perhaps despite the angst and anxiety, or because of it, she has developed courage and fortitude that will protect her for the rest of her life. If so, what happens to the kids who do not learn how to climb above adversity? What happens to those kids with "perfect lives?" Will they fall apart when as adults, they must suddenly deal with job loss, a sick spouse, a child with Lyme?

Following this thought, maybe I needed to be kicked out of the house for no reason, as were my brother and sister. Perhaps I needed to be blamed for my mother's financial ills and be subjected to helping her lest she drive herself off a bridge. Maybe I needed to finally say NO to my own mother. Maybe I needed to be open to letting in people who were not blood-family. Maybe I needed to stop cringing when people went out of their way to do something kind for me. Maybe I needed to accept into my life a most lovely woman who called me her G-ddaughter because she said that G-d put me in her life. Maybe, in order to deal with the adversity that was yet to come, I needed to see that I could survive because I was strong enough with the help of people who were once strangers.

I took a self-directed trip to Italy once, alone, when I was younger and single. Each day, I met people from all over the world with whom I bonded for an hour or a day or more and I had an overwhelming sense that something was looking out for me. I went by myself and returned feeling that I was not alone. 

As parents of children who are sick, as parents who are sometimes ill ourselves, we question--why us? Why our babies? My son was healthy and happy before be became ill. Will he emerge from this with strength or with scars? My daughter, the healthier sibling, knows so much more than I ever did at her age, and not just because of the internet. Has she been affected? Yes. Her petals have been injured, but she continues to bloom.

Many of us parents of sick children have met through support groups, but the threads that keep us connected are not the shared feelings of being victims but of the determination to navigate this fight. We are drawn together from a sense of power and purpose. We struggle to make our families blossom despite the concrete weighting us down. We reach toward other parents through the cracks of the internet as we would toward the sun. 

Paul Tough is the author of How Children Succeed: Grit, Curiosity, and the Hidden Power of Character. According to Tough, "People who have an easy time of things, who get eight hundreds on their SATs, I worry that those people get feedback that everything they’re doing is great. And I think as a result, we are actually setting them up for long-term failure. When that person suddenly has to face up to a difficult moment, then I think they’re screwed, to be honest. I don’t think they’ve grown the capacities to be able to handle that."

Additionally, in an interview with Dallas News, Tough states, "There’s lots of evidence out there that growing up in a childhood that has too much adversity, too much stress, too much trauma is terrible for kids. It doesn’t make them stronger and more resilient. It harms them in all sorts of psychological, emotional and physical ways. But at the same time there’s also evidence that too little adversity can be harmful as well."

What significance does this have for our children who suffer from Lyme, PANS, PANDAS, other chronic or poorly-treated diseases? How does this help to calm our worries about the siblings who are also losing chunks of childhood due to family medical issues? 

The child in my classroom who has dealt with divorce will hopefully never have to deal with such adversity again. But if she does, she has already learned that she is not alone. Her teacher is just one person who is there for her. Our kids at home who endure years of treatments for chronic illnesses...some are already pursuing their dreams. For others, just holding on one more day to fight this illness shows perseverance. When that strength is finally used for something other than survival, whether it be for mere pleasure which has often been forsaken, or for a meaning in life, that child will soar.

As a parent, I can truly say that today, I survive because I am strong enough to accept the help and love of people who were once strangers. I am not formidable, but I have power. I may not be able to save my son, but I will not quit until he is better. Perhaps the difficult times I was forced to manage as a teen and young adult prepared me for this concrete path today. 

 

 

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