"Should-have-been"

It's easy to say during certain times that you're going to be an open book, that you'll share your life with abandonment, but then that time comes when you are too vulnerable to expose yourself.  Writing for me feels more humiliating than that dream where you go to school naked. It's not just your flesh that is exposed, it's your soul, with all the dirt, the marks, the darkness. 

During a crisis, it has always been easy for me to write.  I want you there with me dear friend.  I want to share these times with you- to let you live through Dominic a very special, called life.  During times of great joy I want to share the happiness with you, to let you feel that joy bubble up at the moment of triumph.  But it's during the ordinary, everyday tornado of happiness and grief that I become paralyzed.  In that paralysis I want to protect you.  And me too.

There's a fine line on which I teeter between the real, honest truth about the joy and pain of having a child with special needs and the desire to protect myself and all of you from the brutality of it all.  And it is brutal.  This life, this calling, pounds on your soul in a way I could have never imagined.  You are in an almost constant state of laughter and sorrow, acceptance and forsakenness.  So, in the meantime, I've chosen to hide, I've become a coward.

But then God spoke, as he always does, through someone I would not have been listening for Him.  And I heard Him loud and clear.  This is Dominic's vocation- do not let your pride and fear get in the way of his work.  So with that, here I am.  I can't hide who I've become though, and I hope that's okay with you. 

No longer am I the she-hulk who runs into the clinic fighting.  No longer am I the loud advocate prideful in proclaiming the truth and forcing all to see his dignity.  I've been broken down a bit, in a way.  I'm gentler, quieter.  I do fight when needed and I still fiercely protect him, but I can listen now.  I cry more.  I laugh with greater understanding of true joy.  I'm more private in my friendships.  I'm tired.  I well up with tears at the drop of a hat.  I celebrate and mourn all at the same time.  In all, I've become more human.

I've always been able to see the "should-have-been" when I've treated children with profound disabilities in my work.  I've always felt great sadness when I would catch that look, the angle I would see that child's face and know what he "should-have" looked like, if only.  If only he had muscle tone.  If only his jaw had been developed by being able to chew.  If only the facial muscles were formed as they were intended.  I see their little frail bodies and think of what their arms and legs would have looked like if only they could walk, run, jump, and play.

And now, I too have a "should-have-been."  There is a sadness when I see Dominic's little deformed foot with the curved bottom; it should be developed and flat from walking.  Or his little hip bones that stick out way too far- they should be deeply seated in the pelvis from running.  Or his little hands and bony fingers atrophied from lack of use; they should be supple, covered still with a bit of baby fat.  No longer is he the little chubby baby that may develop into what he should.  He is now the 5 year old that hasn't.

And through all this, the weight of my heart when I ponder these truths, the holding back of sorrow so as to not allow it to overtake me like a tidal wave, I now see the truth.  He is not a "should-have-been" at all.  None of them are.  He's made perfectly, in the image of God, just as he was meant to be made.  He is a pilgrim, just like the rest of us, on our way to the Promised Land, where his soul will shine with the perfection he was gifted from his conception.  I believe it assaults the dignity of each of the "should-have-been" children to look for the way they would have been "if only."  It is them who will be the happiest to reach the Kingdom, and it is them with their purity, who are more alive than all of us.

This is a reality I know and believe with every ounce of my being.  I know God is good.  I know He is all-knowing and I know He could make Dominic into the boy he "would-have-been" prior to The Fall, and yet He doesn't.  He chooses to let Dominic live like this.  The allows the deformities to continue to grow with Dominic.  I trust Him, hiding myself in His Sacred Heart  and say "yes," as long as He desires. 

I've learned that it's okay to hurt, okay to say "no" sometimes, begging for mercy; okay to yell and scream and wish for the life you planned.  But we can't live there.  We have to allow ourselves to have our feelings but then we've got to stand back up and let the joy overwhelm us that comes along with this great life.  Sorrow?  Yes. 

But also joy.

He is our teachable moment

There is an article circulating out there on the blog-o-sphere which in so many words patronizes its readers, and all of humanity for that matter, for being drawn to people whom look different.  It asserts the notion that we as individuals are not connected and thus have no responsibility towards one another's formation.  The synopsis of the article is "I'm not interested in teaching you why I'm the way I am... so move on."  Though I understand the writer's desire for autonomy, I found the general theme of having no responsibility for our neighbor absurd and sad.  From people with different lifestyle choices, to people with green hair, to people with disability, the author wanted the reader to know it is not their responsibility to teach others about themselves.  Look away and carry on.

My mind has been swimming with the ideas this article puts forth for several days and I've come to the conclusion that if this writer is correct, that we exist only for ourselves without going out to others, then Dominic's life, and those like him, are worthless.  I mean really, what is the point of someone who can not speak or "do" much of anything in this author's view of reality?  Clearly, they burden society with their substantial medical costs and inconvenience.  And let's face it, it's unpleasant to see a contorted "should-have" of a person.  So, what's the point really of their existence if they are looked at through this lens?

But that author is wrong.  Thank God, she is very wrong.  Who are we if not one body, placed here on this earth to teach, love, and build up others?  What would our life look like if we didn't go outside of ourselves to reach others and share our very beings with them?  Is this not exactly what we've been asked to do: "Love your neighbor as yourself?"  We love others through the sometimes uncomfortable and difficult task of reaching out and being open to know someone and let them know you.  However, our spirit is willing but our flesh is weak.

Don't we all go around immersed in ourselves, hardly able to pry our eyes off the screen in our hand?  Wouldn't we all rather not be bothered with the needs of others?  How often do we parents answer a child's demand with a sigh and reluctant half-hearted gesture?  It's human nature after all, the state of our poor souls after the fall.  And it is because of this tendency towards selfishness that I believe Dominic and those like him are teachers.  They are here to make us look up, make us go out of ourselves, out of our comfort zone.  Make us serve.  Make us love. 

The author of the article ended her rant with "I'm not your teachable moment."  That last line left me so sad for her.  I wanted to yell through the screen, "But, you are!  We all are!"   I wanted to tell her about Dominic and how people know him when we go out in public.  People I've never even met know Dominic.  They come up and touch him, smile at him, love him, and greet him by name.  And often even those who have never met Dominic and do not know our story touch him as they walk by.  Their light brush of his cheek or rustle of his hair is them going out of their comfort zone, out of themselves for another and learning to love.  Sometimes they look, stare really, at him, shocked, then look at me and smile a genuine smile of compassion, as if to say "ah, at first I was sad for him, but now I'm happy for you."  He is their teacher.  He says nothing, does nothing, but in his inability, he teaches them to love.  He is our teachable moment.