Tuesday, September 13, 2016


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.