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

Thursday
Jan042018

Top New Year's Resolutions for a Lyme - PANS - PANDAS Parent

Top New Years resolutions of a strung out PANDAS parent, constructed by a few harried moms. And, in no particular order, here they go. Can you add something witty to the list?

  • To write sad country music about holding back tears or alternatively, hard rock about OCD
  • To breathe. Ohmmm..... breathe out fear and breathe in less chocolate
  • To clean out my child's compulsively messy room and actually throw it all away unless I see something I want for myself, that is
  • To get my kids’ medical binders organized
  • To be able to identify each medication by its size, shape, or color, and not by the label on the bottle
  • To compile a list of civil come-backs for those who criticize what they perceive to be my not ultra-amazing parenting skills
  • To not over-share with people who do not care
  • To corral the drama-llamas and stay far, far away, in another galaxy….
  • To not wait till 9:00 on a Saturday night to dole out medicines for the week...
  • To stalk every support group and doctor website for the next greatest supplement that could save my kid’s life
  • To read every PUBMED article ever published about autoimmune encephalitis
  • To be able to pronounce methylenetetrahydrofolate reductase. And say it 5 times fast (just kidding, even saying it once counts!)
  • To carry on an entire conversation using acronyms: PANDAS, PANS, MTHFR, CBS, COMT, MAO, VDR, HLA....
  • To finally understand methylation and the mother-father-shut-the-door gene
  • To be able to decipher a 23andMe and comprehend snips (SNPs)
  • To memorize the Lyme-specific bands on a Western blot. No, wait, I did that already!
  • To play Cards against Humanity: the PANDAS pack
  • To watch every Dwayne Johnson movie, because they have absolutely nothing to do with PANS or Lyme. And because Dwayne Johnson. Or to alternatively, watch every Avengers film because of Thor, who can save the world with his muscles and his hammer. The old movies, where his hair is long….
  • To play more board games as a family, so that we can create some pleasant memories. Once I bribe them all to sit there
  • To make gluten- and dairy-free more enticing, especially because I detest cooking
  • To get off all sugar--yeah, right!
  • To develop a non-toxic, Teflon-like skin, so that criticisms, complaints, and even well-meaning-yet-unhelpful comments roll off of me like water from a duck’s back
  • To win the lottery to pay off all of those medical bills
  • To go a whole day without mentioning Lyme or PANDAS! 

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