Tuesday, January 16, 2018

The terrible cost of becoming little

If you all had ESP, you would have known about all of the mental posts I have written you in my head.  And not to toot my own horn, but the ones written in my mind that never touch paper seem to be the best.  Of course, I'm the only critic, so I suppose that assessment may be biased. 

Really though, it just seems like too much.  How many times can I talk about the same thing?  I bore myself with my circular thoughts so it seems silly to write them down.  But then another mom who I presume has a child with Dominic's condition asked how he was.  It's for you Bonni I'm writing this update.

This may sound terrible and morbid, but I spent much of the first 3 years of Dominic's life waiting for his death.  With the prognosis he had, it's really all I could do.  I prepared, and waited, and prepared, and got angry.  I yelled at God, I cried at him.  But nothing.  Those years were such a powerful growing period for me, where God gently led me to accept His will, not what I thought His will was, or should be, but what it actually is.  I realized that I put my trust in the doctors, the grim prognosis, the worlds whisper that he's not fit to live, the allure of the "easy life" I secretly coveted.  Oh, to go camping like my friends! 

But somewhere in these years I finally was able to see that despite my thrashing and planning and torment, I do not decide God's will.  He gave me a fiery spirit that needed to be cultivated to bear the fruit he meant for me to bear.  Still, that process continues, and I suppose it will until my last breath, but he has softened my heart and helped me to accept his will, however it comes.

Over a year ago Dominic had his third bowel obstruction that required emergency surgery.  This surely was it.  The time had come for him to die.  But to my surprise the robust and beautifully honest Greek surgeon met me in the waiting room that early Christmas morning, flailing him arms in frustration, to tell me how scarred up his insides were from the repeated surgeries.  But, to my happy surprise, he made it through, once again. 

Three weeks later, after another brush with death when his body wouldn't accept food, Mike and I, along with our palliative care team, explored all the terrible possible ways he could die and decide what measures we would accept and which ones we wouldn't.  But once again, His will.  He lived.  At discharge, the same surgeon told me to watch Dominic close, because the obstruction will happen again.  I appreciated his honesty.

This past Christmas Eve marks one year since his last obstruction.  The first six months after surgery Dominic was tormented with horrendous pain from the scarring in his abdomen.  With the help of an amazing pain doctor, and an obstruction that untwisted on its own, his pain ceased almost six months to date after the surgery.  Those six months through were some of the hardest days we've had.  He would have happy days, and then without warning would begin screaming this terrible, tormented scream that could only be alleviated by heavy narcotics.  He would arch back, tears streaming down his red cheek, his neck in full extension so that the trach would be coming out.  He would scream those terrible silent screams until his lip were blue, the ones where you brace yourself for the piercing noise to start again, and would gasp and it would all start again.  I balanced between wanting him to be happy and alert and pain free, medicated, and praying for his death so the pain would end.

From pure grace, I was spared from ever getting angry with God about his pain, but the questions of why a child who can't understand what is happening to him mounted.  Again and again, I was reassured in various ways that this is Dominic's way and to accept.  I must believe that somehow Dominic has consented, as I know he is being used for the glory of God.  It was difficult to maintain relationships with friends, and even hard to talk with my family at times.  I felt a constant void and nauseated feeling in my gut.  The constant threat of sudden profound pain and screaming seemed to lurk like a demon and rest was elusive.

Just as suddenly as it began, the pain stopped.  We seemed to have gotten our happy, silly boy back.  We had a good six months of calmness.  We all recovered from the anxious feelings the time of pain seeded in us, and we were able to return to some sort of normalcy.  In October, we were granted a Make a Wish trip that changed our hearts.  I'll write more about that another time.

Recently, Dominic was diagnosed with a growth in his middle ear called a Cholesteatoma.  Its a growth of skin cells that though it's not a tumor, is aggressive like a tumor.  It produces an enzyme that dissolves bone.  So far, the growth has encapsulated two of the three hearing bones in the middle ear and it seems to have traveled up into the air pockets in the skull.  He will have a surgery to remove the growth and with it will have his hearing destroyed in that ear.  Incidentally, the imaging we needed prior to surgery also showed he will continue to loose hearing in both ears until complete deafness.

During a recent hospitalization, we also discovered that Dominic needs home urine catheterization.  We've had to add this to his already long list of daily duties. 

Though Dominic has started at a disadvantaged state as far as his capabilities, it seems he is slowly loosing what he does have.  This can be looked at in two ways it seems.  First, we can look at it with pity.  We can say "what a shame" or perhaps "how could God?"  Alternatively, we can attempt to look at it through the eyes of God.  Being unable to sin, baptized, and confirmed, Dominic has a pure soul that pleases God very much.  As his little abilities begin to diminish, it doesn't affect his pristine soul.  We however, have a chance to grow in love and holiness by happily, or willfully at lest, serving the least among us.  Because of my proud and rebellious heart, God is showing me great mercy in giving me an opportunity to become little, like Dominic. 

 Remember Dominic when the little ones around you demand more than you have.  The least tear at your sanity and threaten to destroy you.  I feel God inviting me to become little, and through Hope, I know he's inviting you all to the same.

In all things, beautiful and terrible, God be praised now and forever.