Tulipanes

 tulipanes

Mañana empieza el mes del Autismo. Lo más seguro entre todas las cosas que circularán en el mes, aparecerá el famoso ensayo de Holanda. Es un ensayo que compara el tener un hijo con necesidades especiales con dar un viaje a un país exótico. Aprendes el lenguaje, la cultura, te pompeas y el avión se guilla de Malaysian Airlines y aterrizá en otro país dónde estas más perdia que un juey bizco. Pero al final te acostumbras y das gracias por los tulipanes bellos que hay en Holanda porque en el otro país dónde originalmente ibas no tiene...o algo así, yadayadayada.

Ese ensayo me hastia.

¿Qué tulipanes ni que madre?

Tener un hijo con una necesidad especial es cómo ser escogido en la lotería para Vietnam. Ahí estas en tu sofá chillin' con planes y BINGO modelfukel...salió tu número y pa' la jungla es que vas.

Sin la más mínima idea, ni entrenamiento, ni nada. Toma tu pistola y gud luc.

Sumergido en una jungla con gritos y tiros y disparos, todo el mundo dándo instrucciones y tu rogándo alguna semblanza de humanidad y dirección

Y llegan esporádicos momentos sublimes, en el silencio de la noche, contemplando lo que pudiera ser, en otro momento, un lindo paisaje, sólo para ser interrumpido por detonaciones del caos.

Y en momentos, tus piernas serán cargadas por personas que en otras circumstancias, sus vidas jamás se cruzarían. Y también los cargarás a ellos. Sin medir muchas palabras pero con un voto en silencio de que nadie se deja arroyao' (el equivalente a mi Alianza de Autismo).

Y el combate físico termina y regresas a una vida que ya no existe y que no tiene lugar para ti. Y tienes que ajustarte y tratar de seguir con los fragmentos que quedan. Y sufres de PTSD y escuchas gritos dónde no los hay. Cómo las tantas veces he corrido al cuarto de la kid pensando que estaba llorando para encontrarla dormida. Los gritos y llantos eternamente incrustados en mi mente.

Y vas a grupos de apoyo de veteranos, dónde muestran sus cicatrices y de vez en cuándo historias de momentos de felicidad y heroísmo.

Y así es. Cómo Vietnam. Y el que ha ido a la guerra, sabe que NADA jamás será igual y que la apreciación de la felicidad se convierte en genuina y valorada. Y nuestro circulo se cierra e incluye a tu corillo de soldados que han batallado contigo. Y nos damos cuenta que la vida es muy frágil y corta para lo que no compone nada en ella.

Así que pa'l carajo los tulipanes.

Corazones púrpuras es lo que hay.

(C) 2014 Enix Ramos

Edge of Seventeen

Edge of Seventeen.

Yes, one of my favorite songs from Stevie Nicks.  Also what we are on.  On Tuesday, she turns 17.

SEVENTEEN.

When I was that age, I was enjoying the most spectacular days of my youth with tons of friends, going out to high school parties, crushing on boys.

She spends most of her days in her room. Half hair headed.

Our days our counted.  And this year, as last year and the year before last, I hate her birthdays even more.  It is a reminder of the ticking clock. It is the time that is running out. 

It is all the things we haven’t done and will never get to do.  (and yes, I mention them often)

But you will ever understand, unless you share a similar path.

It is the long nights awake wondering if I have done enough?  If the decisions that have led us up to this point, were the right ones? What stones have I left unturned? What if I would have chosen differently? What if I die tomorrow?

These are the things that shake me.

A few weeks ago I went to the last dance recital of my niece.  She is in 6^th grade.  I saw her dance and my heart was so full of joy and pride.  Then halfway through, I had to bat tears away.  Things I never had.  When she was small, I stopped going to birthday parties, because it was hard going and avoid comparing her to other kids. 

Yes, emotional police, I know.  I shouldn’t do that.  But we do, do that.  We compare. I see people with their teens getting licenses, and driving and hanging out…And although I hold no envy, it stings.  17 years later; still stings.

She yearns for normal.

And as overrated as that is, I know “normal” would make her happier.

Which would in turn, make me happy too.

I don’t know how to end this.  I usually have some poignant remark on all the odds we have endured and overcome…but frankly, none of that matters. What matters is the now. The here.  Sometimes I see glimpses of a teen that could be.  And sometimes it is bleak.  But nonetheless, 17 is right around the corner.  And we will have a few days off and we will hang out and bake a cake and maybe hit the beach and I will turn a blind eye to the gone hair and the other things that drive me up a wall.  And I will sing “Happy Birthday” to the only person in my life that breaks my heart and mends it up in a single swoop.  And when she blows out her candles, I will sneak in a wish.

Time.

Grant me more time.

Hair

What little hair was left, stood at my feet; just a few strands. She was so calm and cool and relaxed as the machine buzzed off what was left.

I, on the other hand, thought I was going to have a nervous breakdown. I felt the panic attack slowly creeping in. I could feel the glare of the people sitting in the waiting area.  There was one particular lady who kept looking and I swear I had to use all the strength in me not to yell: “Take a fucking picture, it’ll last longer!”

Why so upset? It is just hair. And anyone who knows me, really knows me, knows that I have never given a fuck about hair.  Never. Ever.

Why upset now? Cause it’s my kid. Cause, unlike me, she is not shaving it off for fashion or because she wants it that way.  It is because we must. Upset because since the beginning of time we were told that a crown of hair over our heads was the ultimate woman standard.  The normal standard; which at times, is what is needed to survive.

And I cannot wrap my head around this.
This week she told me she was trash.
TRASH.
Because she felt she was not worth anything.
And I stood in agony.
Wanting so many things.
I stood grieving. 16 years later.  Still grieving. Our grief never ends.

 So I suggested that maybe she should cut what little hair she had left, so we could work on getting it even again; start from 0. She said “No”.

“What am I going to look like? I am going to look ugly”.  I did not insist.  Later in the week, she announced that she wanted to cut it.

So today she sat on the chair and parted ways with what little she had that she considered “pretty”.
In the bravest, most fearless way you can imagine.

She walked out with her head high and when we got home to her new baby bird, who yet has no feathers, she leaned in and whispered:

“Now we look alike”, in the sweetest, most endearing way possible.

No one who is not in your shoes, will ever understand what it feels to grieve a child you still have. But also, no one who is not in your shoes, will ever understand what it feels to have so much admiration for a child. With or without hair.

And not today or tomorrow, but in a few years, kid, I want you to read this.  And I want you to know that while my heart breaks on one end, you manage to make me so fucking proud.  I know I tell you all the time, but you need to know how valuable you are. You are worthy.  You are exceptional. You have such a huge heart.  I am proud of you.  I am proud of how you carried yourself today, with such grace and poise and bravery.  I am honored to be your mom.

And for those who are still reading, please, PLEASE tell your kids how valuable they are. Let them know every day the impact they can make in this world and in your lives.  Telling them they are pretty or handsome is nice, but also let them know they are brave, caring and brilliant.  In the same say we are quick to punish and point out the bad, let us be equally quick to point out and celebrate the good. Make your homes safe places for them to be in, to confide in, to grow in.

The meek

We got a baby bird this past Saturday.

A tiny, tiny newborn love bird.  A baby that needs to be hand fed and looked after like a human baby.

We aren’t regular folks.

We can’t have regular pets.

That’s how we roll.

The kid has been asking for a bird for the past month.  She floods my feed with bird videos, pictures; her social posts are all bird related.  Like all our lives, her autism gives way to obsessions nonstop.  This being her latest.  We had not originally wanted a bird so delicate and tiny, but her face when she first set eyes on the bird, let me know that this HAD to be done.

Our home has never been a “normal” home.  Our pasts tarnished with spoiled moments; of “could be” moments.  These last few weeks have been stressful for me as a parent.  The uncertainty of the future, the inability to provide help, the frustration of trying it all and not have any results-stings.

We are close to taking the decision to have her head shaved once again.  The trichotillomania has gotten worse and I try to remain numb but it is impossible. Her self esteem beginning to falter and my heart breaking into tiny pieces, just when I think it's been broken enough.

So I caved in.

I caved in and we got a baby, bald bird.

Who looks like her.

She cradled it in her arms and talked to it with all the tenderness in the world. I saw these two bald, tiny, vulnerable creatures looking at each other with amazement and wonder and love.

All this love.

She loves. She loves Big. She deserves all the happiness in the world.  She deserves to feel valued and beautiful and happy.

But sometimes even I can’t provide that.

And maybe this tiny little bird isn’t the solution to all our problems.  Maybe it won’t stop the anxiety or depression or the hair pulling. But my options are running out and I don’t believe in a lot of things, but I have to choose to believe in this; in this bonding of the small and meek.

In the feathers that start to grow and the wings that will eventually lead to flying. in the meek that shall inherit the earth.

Post Season

Those that know me well, know that I live for one thing come late March: Baseball

I am a hardcore baseball fanatic. I truly love the game.  I started a goal a couple of years ago to visit every MLB park.  So far, I've done 3. By the time the year is done, I will be checking off two more. My favorite team: New York Yankees. I saw that eye roll. Have we been losing? Yes. Does our pitching need a re-haul and reboot? Also Yes. But no matter how much they lose, I keep coming back.

On Wednesday I leave for a short trip to NYC, to go to the last home game between the Yankees and the Red Sox.  I will be traveling with my father.  "A Field of Dreams" type baseball pilgrimage trip. No children, no other folk; just us two. It is the first time ever in my adult life that I travel with him.  Needless to say, the trip means a lot to me.

My parents and I have never had a close relationship and of course you can argue that many people have this situation with their parents.  But you see, our relationship is strained. Very strained.  Just this week alone, I've had a million reasons to cancel this trip.  But I won't. I need to see the Yankees. I need this trip with my father; which was his idea in the first place.

He was never the doting dad.  Never will be.  Still, in my late thirties (very late), I struggle with this fact.  We hardly exchange words, much less embraces or affection.  We have little to nothing in common. But come March, something magical happens: Spring Training.

My father is a baseball fan. I am a baseball fan, because of my father.

March rolls around and it is like we are two different people.  We talk daily. We watch plays.  We watch games. We talk stats: ERA's and WHIP'S and magic clinch numbers.  We celebrate when the Yankees win and curse like sailors when they don't.  As a child, our living room was decorated with pennants and pictures of Gooden and Strawberry (he was initially a Mets fan).  He was happy and relaxed watching baseball.  I would join him in the living room.  We would go to the park on Sunday and play catch. He took me to the old, ORIGINAL, Yankee stadium. I sat next to him and I can still smell the hot dogs and feel in my hands the little tiny wooden bat he bought me, emblazoned with the Yankee top hat logo.  Baseball gives us a relationship; gives me a piece of normalcy, that I cannot have the rest of the year. I am beyond elated we play a long season; 162 opportunities for conversations. His coldness melted away by a triple play or a no-hitter.

Then in late October or early November, we settle back into our silence.  Each drifted apart into the cold, long winter off season. This past week we've acted like the off season was already here; bickering and distancing ourselves. On some days not even baring to be in the same room together. But this afternoon, he asked if I had packed and showed me the new Yankee shirt he plans to wear to the game.  We even talked about going to the Friday game vs Baltimore. But we never, EVER, speak of the things that happen between us; the things that haunt us and makes us as dysfunctional as we are. We will never speak of those things. We are only fluent in one language: baseball

The Yankees lost again (another blown save by Betances) and I should be used to it by now.  I really should. But it is the final stretch before post season and I detest being eliminated. My Boston friends tell me it's not too late to jump ship and join the dark side. They shower me with inquiries as to "Why do you keep rooting for a team that keeps losing?" Part of me wants to answer that it is because it is the only thing I know.  Part of me wants to answer that I will love them, no matter what. That they suck at times, that they disappoint me at others. That they make plays that baffle me and leave me bewildered.  But deep down, it is glorious to see that triple play, that win, that home run in the bottom of the 9th when we are down by a run.  That elation of a walk off, that fills you with utmost joy and you can only see if you are a true fan that doesn't quit.  Cause Berra said it best: "it ain't over, 'till it's over"