And while she is off playing cupcake fairy/ belle of
the ball at school, Goo and I will go to the grocery store to get supplies for
dinner. She has requested -and I am NOT kidding here- "fritteroni". Go
ahead, I'll wait while you try to suss that one out. Took her father and I all
night last night. Turns out she wants apple fitters and pasta (macaronis,
actually she means rotini but it's all macaronis to her because that's more fun
to say). We can blame my folks for the fritter obsession she has developed.
(That's the aforementioned "emergency doughnut.") When my father is here, he
always goes out and gets doughnuts for breakfast for everyone. (Coffee and
sweet rolls is the Pennsyvanis Dutch breakfast of champions.) She has not told
us what sauce she wants on the pasta but we will get the makings of several and
let her pick. Then, we will wrap presents and finalize dinner plans more than
likely answer phones allllll night as relatives start calling to sing at her.
Her big present (the live barking, drooling one.) will not be until next week,
and while she knows a present is late, we didn't tell her what it is. So no
finking, guys. Her big party weekend with all the relatives will be later
on. She actually does not seem to mind. She gets more parties and more
fussing over her that way. Feisty Pants is all sorts of things, but a fool is
not one of them. She knows a good deal when she sees it. Two parties is more
fun than one.
And finally, when the day ends and she is asleep,
her father will probably catch our breath and watch her sleep for a few
minutes. We will probably ponder the journey thus far. People call us the
time and say, "Wow, she's that old?!? Where did the time go?". People who have
NOT worked 18 hour days or held her hands while she got stabbed and poked and
prodded. Or spent endless hours sitting beside a sedated kid on a ventilator in
far flung PICUS. People who haven't spent eons in waiting rooms and arguing with
insurance workers. So, you will all have to forgive me if what I feel, what
her father and I both feel, is not wistful and pensive but defiant and
triumphant. This is another side of being a parent of a special needs child
you don't hear about often. Getting my beautiful, vulnerable daughter to this
point of fun, quirky feistiness was a hell of a lotta work. Endless sleepless
nights and often crazy decisions that you second guess for a long time. Endless
amounts of professionals from therapists and teachers and nurses and dcctors and
respiratory therapists and paramedics who work really frigging hard alongside
you with one astounding goal- to make your child's life better. Endless crazy
nights that seem to never end as you rush to other states and other hospitals
hoping she is not scared and in pain without someone who cares beside her until
you can get there. Endless moments when you hold your breath too scared to pray
or breathe until she breathes just one more effing time. So tonight as she
drifts off to sleep, her father and will stop and watch her breathing for a
moment in the quiet darkness. And we will be silent, because what we will
really be doing, on the inside, is beating our chests and howling defiance at the
universe, because dammit, we made it this far.
Happy Birthday Feisty Pants. We love
you.
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