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

 

 

 

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I wish I was fine

It’s like my brain

is doing a freakin’ crime....

 

From a rap by a child, age 11

Monday
Jul162012

The One Who Got Away: The "Well" Child

When my kids were 4 and 2 years old, we took them out for Sunday morning bagels. Much to our embarrassment, they'd sit at the bagel shop table and greet everyone who came in. People would smile and wave back. Life was sweet.

My oldest child was born with a "party-personality." He is now the one ill with Lyme Disease and PANDAS. My littlest and healthy one was gifted with confidence, clothes-sense and people skills. Her pre-K teacher said that she had a "magnetic personality."

But everything changed with her older brother being so chronically ill. That confidence has been replaced with anxiety. Her cheeriness is mingled with sadness and anger. Her sense of well-being has been replaced by the experience of having one of the people she loves most in life strike her down with harsh words. These words might be sightly more accepted if this were a normal sibling relationship and spoken in the throes of a brother-sister disagreement. But hearing, "I wish I didn't have a sister!," and, "She makes things worse for me," again and again, despite our efforts to halt them, is too much.

And that experience translates into the outside world. It's incredibly painful to see, especially as girls experiment with cattiness anyway. She tends to gravitate to girls who can be nice, then nasty. And she responds back quickly, impulsively. Which then causes other girls to choose sides. And not hers.

Daily, she comes home saying that so-and-so is being mean to her. And we haven't always believed her. But maybe we should? How many times do we contact a school to let them know that she thinks she's being bullied?

And there's more. Her room is a mess. She cannot stay organized. She doesn't realize her own behaviors when she reacts to her brother. She cannot see that he is sick at times. She worries that she will also get sick. She craves the attention he gets, even though we give her hours of time and affection. Nothing is ever enough for her in our little world. She feels guilty that she's ok and her brother is not. And he resents that she is a "regular kid" and has it all, when he doesn't anymore.

So many families who have children with PANS are struggling with more than one child being stricken by it. That's our anxiety. Might both our kids be invisibly sick? Her waking up at night is stress and sadness. Her cutting the hair off her dolls is a cry for help. Her twisting her lips is NOT a tic after all. Oh, we've had her tested. Could she have PANDAS? Lyme? No and no.

She calls this, "The House of Stress" and cries when her brother yells, stumbles because he's off balance, or wakes her up in the middle of the night with loud tics. She's angry with him, especially because he doesn't like her when he's in the midst of a low-spell.  She plays with him when he's feeling good and loves her again.  What am I teaching my child? What kind of relationships will she have in the future?

We attempt to keep the two of them as separate as possible in order to protect her. But to really protect her, I need to let the world know about what she must endure, and how she reacts now to other children as well. She has become accustomed to one she loves being downright verbally mean to her. And the only way we can truly save her, perhaps, is to get her ill brother out of the house. Which would teach her that if she misbehaves enough, we will get rid of her, too? 

Not an option, though. There do not exist any Lyme or PANS-literate schools and hospitals. And my sick son needs his parents. You don't kick out a child who suffers from cancer. 

So, we have her work with a thoughtful therapist who specializes in the "well" child. We have joined a wonderful program, maybe the only one of its kind: Sibshop, wherein children who have ill siblings meet together in a guided program to share experiences, sympathy and FUN. We educate her teachers, her school. We found a teenage tutor to work with her on math (since she had no patience for parental support in that area--plus, she goes to her tutor's house--an added bonus, especially as she's much loved there.) And we load her up with the activites she wants to do and learn so that she's out of the house a lot, with one of her parents by her side.

This is one resilient girl.  She is full of love and empathy. Someday, she will shine. But it sure ain't the childhood we wished for her.

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