Ode to a PANDAS dad
Saturday, June 15, 2013 at 09:33AM
Editor

Who woulda thought
when we fell in love all those years ago
(riding the subway together around the city
going out for bagels--sesame with cream cheese and tomato--
or the Wok-n-Roll Chinese restaurant in the Village--no longer there)
that our future would include a strange disease with a fuzzy animal name?

I wanted kids.
You weren't as committed but agreed.
We had fun together, those early years, just the two of us
traveled, had date nights
Everything fell into place--my new job, a cute old house
the German Shepherd puppy you wanted
a first child
a second child
We found a good babysitter and bicyled together. 

Jump forward.
you who doesn't really cry
will look at pictures of the kids from years past
and get almost-teary eyed
almost

life isn't the same anymore
something is missing from the days of cheery-eyed children 
you call it the "new normal"

You amaze me.

And I don't say it often enough.
I don't thank you often enough.

You, who are so creative, opening up your own business from home
only to be left tending to a sick child
driving him to and from school
staying with him when he's homebound
dragging him to doctor appointments
again again again
to the point where you don't even know which doctor you're talking to anymore

cooking for him and us
(a fusion chicken with coconut milk and turmeric--healthy turmeric)
and avoiding all dairy, egg yolks, gluten, yeast, olive oil, peanuts
making sure he has protein and allergy drops
administering the meds I leave every morning

taking him on bird-watching trips
bicycling, talking with him about cars and ancient Greece,
politics, world news, girls and SEX

waking our daughter up every morning and getting her off to school
going on class trips
soccer practice therapeutic horseback riding drum lessons playdates girl scout pick-up
pharmacy runs, soy creamer runs
making coffee with caffeine for the boy with the migraine
and decaf coffee for those of us who can't handle our caffeine
going to every football game
videoing them and making the end of year football dinner movies 
taking our kid to the emergency room when you suspected he broke his arm
(he did) 

washing the dishes by hand when the dishwasher breaks
cleaning the house before the homebound tutor comes
getting the grass to come back in the front yard where the kids bicycled last year
setting up the blow-up water slide in the backyard
mowing all around it
buying a huge ladder to do the gutters

designing BAD PANDAS t-shirts
and the flyer for our first PANDAS Family Fun Day

understanding our son's rages
holding him down if need be
rejoicing in his good days
always paying the doctor bills
even when it means borrowing more from a credit card
arranging a babysitter so you can go out and do your professional job

yeah, you're not pefect
and neither am I
you calm me down when I need a hug
and take over with the kids when I need a break

every day you GET Lyme and PANDAS even more
you can now talk about the controversies
(not that you want to)
you can take apart our son's bicycle after he tries to escape on it
and just as quickly put it together again when he's calm

You can fix a flat bicycle tire in minutes
and make us all laugh and get silly 
you can cuddle our daughter while I get our son to sleep
but you can't take away her night-time anxieties 

And you can't fix our first baby

Guys like to fix things
how frustrating, how disempowering
It's been four years of not being able to fix things
but with a simple hand on my shoulder,
your big hugs, your sense of humor, a word about love
that morning cuppa Joe for our son
that final, "Have a good day and be safe" before we leave,
you're always being there for us
you make a difference
we are a team

You, who never knew if you'd have children
who love your children beyond anything now
would do anything for them
and are so loved in return 

you are the world to our little family

Article originally appeared on PANS life (http://www.panslife.com/).
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