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.

Between Brothers

It is a beautiful dance between them. I watch quietly and closely, willing my eyes not to blink in case I may miss a second of this magical moment. I feel my fears and anxieties melt into a shallow puddle beneath my bare feet, as superman looks deep into monchichi's eyes and patiently waits for his big brother to look back. They have a language of their own, my sons, these giant souls in preschool bodies. Unlikely friends in the real world, brought together by DNA, they do what comes naturally to them; hug and play, cry and fight. I witness their sibling drama daily, holding myself back from choreographing each encounter until I am pleased with the results. It is their dance, not mine, I remind myself.

Andrew smiles at Ian, nodding with so much enthusiasm I begin worrying now about his neck. It is a full sentence in this house, his nod. They have completed a perfect exchange of communication, and something electric passes through me. Years of training and therapy come together in a split-second. I feel a little less depleted; a little more hopeful. My mind rests, forgetting for now about the long list of Can’ts and Won’ts and Why’s.

This is my deep breath. This is what my mind and body craves as I wake each morning and struggle to make peace with a reality that can sometimes feel so unreal. I am stern with myself. It has been four years! You are not an amateur! Get it together!

But the heart hopes as the mind struggles to accept. And it is these exchanges, among two brothers, that makes this seem like such a misunderstanding. Look at him! He is nodding! He is smiling at his brother! They are making decisions! They are speaking a language! This counts!

So for now, only tiny glimpses into the potential future are allowed. Anything else would be disastrous. Anything else would poison what is happening now. Today. A perfect exchange of communication.

A miracle.