Another Reason Why I Eat Cheese-Its at 1:00 O'clock in the Morning

Among the mystery cans and salad dressing bottles in the bed
among the in-home therapy each day after school
the YouTube videos on repeat
the inappropriate squeals during church
the stims and elopement that always keep us on our toes
there is that other thing we don't talk about quite as often
because, after dosing you with what can only be described as a crapload of medication twice each day,
we rarely see it for months at a time, and end up taking the silence for granted
then
like an overlooked child starving for attention
it stomps its feet
and throws a good old fashioned tantrum
while I'm feasting on mini-pizzas and homemade guacamole

Your eyes roll in the back of your head
a split second of disorientation for you
a lifetime of anguish for me
and when I turn to hold you in my arms
it happens again
and
again
and
again
and by the time Your daddy comes home
I am struggling not to crumple to the floor
and throw a  #$#%%-ing tantrum of my own

Instead
we watch Princess and the Frog
and carefully tally the times
you are interrupted by
this neurological misfit
and I wonder what you're thinking
and what you would say to me if you could speak
and how I would trade places with you in a second

The beauty of your long lashes
pressed against your lids
don't make any sense
as you give in to this ugliness
and you are exhausted now
and so am I
but I wait until you sleep
before I let the weight of the world
consume me

Tomorrow
I will let you watch that part in Cars
as many times as you freakin want
and I'll let you snuggle with condiment bottles
and you can eat chocolate on my white comforter
and splash all the water out of the tub

and
while we cuddle on the couch
your breath steady against my neck
I'll have to really think about
how I'm going to accomplish
never letting you out of my sight
again

Somewhere In the Middle

That is where I am

I don’t petition the government
Or write threatening letters to drug companies

I don’t tape record IEP meetings or have a panel of attorneys at my side
I don’t demand that the school district pay for horse therapy or expect hard working teachers to perform miracles

I stay awake at night, counting my blessings
Cursing the autism and epilepsy

I linger at the bus and watch Monchichi get buckled in
Struggling sometimes not to climb aboard and pull him off
Because I am afraid
Because I am selfish
Because I have no control

I walk back inside
At least three times a week
With tears running down my cheeks

I love my job
Surrounded by laughing loud children
Where I can rest for a little while

Even though, I find myself
Making comparisons
Wishing things were different
Dreaming that my best friend was his teacher

I speak kindly and make jokes
And try not to burn any bridges

I put him on diets that don’t work

I pray
but maybe not enough
And sometimes even that doesn’t make me feel better

I apologize too much
Make excuses
And stress out at playgrounds
Trying to keep his feelings from getting hurt

I wonder what they will say when they finally figure this out
And how we will feel when there is a cure

I smell his hair and kiss his cheeks and make him promises I hope I can keep

I am devastated when his younger brother pushes him for the first time (tonight)
I try to hide my fears for the future
their friendship
loyalty between brothers
and whether it will be enough

I go to bed
Hoping I did a good job
Wondering how it’s possible to love him even more than the day before

And I forgive his brother
Because I love him just as much

I am somewhere in the middle
Of pain
And anger
Acceptance
And hope

I am somewhere in the middle
of clarity
confusion
a calm chaos
in the center of a crisis

I am somewhere in the middle

At least for tonight.

125mg + 125 mg = Too Much Medication

“I can get you in on the 12th of February at 4:15 p.m.”

“Wonderful. Thank you Dr. Marci. In the meantime, can we start decreasing some of the meds? It just seems like so much.”

“I want to decrease the Klonopin first, but in order to do that, we have to go up on the Depakote. So increase the Depakote evening dose by 125mg and in two weeks do the same for the morning dose and then we can talk about decreasing the other two meds.”

I am rolling my eyes now at the phone, trying hard not to stick my tongue out too.

Real Mature Jo.

Epilepsy came into the picture two months after Monchich’s autism diagnosis, almost five years ago. It started so innocently. We thought he was falling asleep in his highchair during meals and even giggled at some of the faces he was making.

But it wouldn’t stop.
It got much worse.

And one week later he was dropping in the front lawn, conscious but immobile, unable to fight against the seizures taking over his tiny two -year- old frame.

Helmets, homeschool, surgery, hospitals. Those were words we were throwing around eight weeks after they told us he was severely autistic. That's when the Merlot began to flow and I started to shut down.

Several neurologist consults later, monchichi was on his first of many medications, and we kept our fingers crossed, hoping this would do the trick. When the seizures progressed, the “Out with the old, in with the new” game began.

And we are still at it.

After his major seizure breakthrough in July, when he had over 100 episodes in less than 12 hours, we added a third drug, Depakote, to the mix.

Now you can barely see his morning yogurt or evening pudding through all of the pills. And each time he swallows them, I am struck with an odd combination of feelings….like I am curing him by poisoning him.

Which is the lesser of two evils?

Of course he can’t function without the meds. His seizures would take over his life. He would be so limited; it's not even a possibility. But three very strong drugs? With a zillion different side-effects just lurking around, ready to strike at any moment?

It scares me.

So we do blood labs
And renal ultrasounds
And make sure things are working properly.
And we wonder how much the medications are clouding his already fuzzy and fragile mind.

He is such a trooper.
And sometimes I am just getting by.

Like bittersweet gratitude with a strong dose of resentment.
Like
Enough Already!

So tonight I will add more chemicals to his thick chocolate pudding, hoping they do the trick so that I can start flushing the other pills down the toilet.

That will be a holiday in this house.

*Got milk? Monchichi's daily cocktail. In an imperfect world, these drugs give him a chance at a normal life, and I know in my heart we will figure the rest out*