On the Mend... Weight of a Life (cont) and ARPKD

Went to work today only briefly.  Believing I had meetings and that today was Thursday, I learned by 10:00 a.m. that I was in a fog.  It must be the fact that I have not had much sleep and came down with a bit of a cold.  I came home, crawled into some sweat pants and proceded to lay supine watching reruns of SNL.  Never really dozed off but eventually pulled myself together, picked up the kids and got them to music class.  Now catching up on homework and thought I would at least produce something today besides a lot of mucus.  Thank you for reading!  Here is the second to last post of Weight of a Life.... and as always, your friendship and comments are welcome.  Like most bloggers, I anticipate each visit with the hopes of finding another follower.. (smile... shrug...)

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In 2001, I became a mother for the first time.  We welcomed a son and I felt from the moment I reached for him I had known him all my life.  I was born to have him.  I envisioned the shape of his eyes, the puff of his hair, saw him in reflections and merely bided my time to take in his scent, his physical presence.  I celebrated in his buttery softness, coveted the defenseless nature of him and was in awe of how his cry settled at the tone and pitch of my voice. I knew having him was testimony I had done good things. 
A brief two years and four months later, we welcomed his younger brother.  The size of my heart, the space of my soul grew effortlessly.  We would go to any extreme to guide our lives to give them the best possible future.  I knew what the opposite looked like.  I knew ugliness and absence and what that does to a child, how it guides their future to unknown dead ends, misguided paths and dangerous drops leaving them to fill painful voids as an adult and in some cases, only to repeat the cycle.  Much like Margaret, they are left struggling with life, searching to find beauty or hope with little promise for the future, a fact society as a whole bears little witness or connectivity to as some of the world’s inconveniences.
A life changing reality came for our youngest at the age of one month when he was diagnosed with a chronic recessive gene trait, Autosomal Recessive Polycystic Kidney Disease/Chronic Hepatic Fibrosis (ARPKD/CHF).  Translation; his kidneys and liver would deny him a normal, healthy life.  This angered both me and my husband in the early phases.  On the day in question, I followed the pediatrician from corridor to office, carpet to tile struggling with his words, desperately hopeful he was not talking of my son.  We landed down the hall, my feet suspended off the floor as I floated out of my body.  Behind a closed door he explained his theory of why my son’s tummy was distended, why his belly button was not just an “outie” but the cause of some unknown growth or strange business going on within. 
“I am going to send you to a specialist; a Nephrologist.” 
Emergency ultrasounds would disclose massive cyst filled kidneys pushing up under his stomach and other organs.  His liver was enlarged and his tiny ribcage struggled to hold it all inside. 
The day we were told to go to the emergency room for dangerous low levels of sodium discovered during a prioritized blood draw, we grasped the reality square in the jaw.  We announced to no particular entity but to ourselves as we paced the bathroom floor that the news was admittedly upsetting and removed us from the normalcy of parenting two boys.  The predictability of skinned knees, flu like symptoms or even broken limbs, was replaced with words like portal hypertension, alkaline phosphates and organ failure.  I had the sudden realization it was us who had been chosen to have these boys.  I was looking at the face of parenting through ghosts of past blunders by others and I had the appreciation of our situation. I could think of no part of me that was not forever changed. 

Wednesday, February 09, 2011 | Labels: , , |

 

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I figured things out late in life, like what I wanted to do, getting married (age 30), having kids, (36 and 38) and changing degrees about 3 times. Now as a cop of 19 years and in my mid 40's, I am finally figuring out some things. My first career or dream of becoming a writer is playing more in my head and daily life than ever. I love it. Thus the blog. It is all mine. I also love being a mother. They are all ours. I love my husband and as a cop, wow.. have I seen some things. Street degree. I got it. Let us learn together. I also am on She Writes.

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