"Weight of a Life"- A visit with ARPKD/CHF

Please take a moment to read the following post.  It is a snapshot of my short story, "Weight of a Life".  I have yet to really dive into my family's internal struggle with our son's disease, ARPKD/CHF.  Some of you may have visited recently hoping to find more information and hopefully you have returned.  It takes time of course to write of things that touch a dense, sensitive spot inside.  Our son's illness; a chronic kidney disease that also effects his liver, has taken us on a journey we never imagined we would take.  I wish I had only overflowing dishwashers, dead car batteries or even stitches to worry about.  I worry about very 'heavy' things every day, most just don't see it.  I keep my resources close by and our family is very resilient. 
The pain more than anything, is the realization there are children who have no one to fight life's battles with them.  The first in line for the assignment should always be the parent, so you would think. I have seen too often children treated as inconveniences and distractions in my line of work.

Be a purposeful mother. 

Please leave a comment or critique.  I will be posting a couple of paragraphs at a time and look forward to your input. 

It was all I could do not to break into pieces.  I held my three-month-old son over the kitchen sink, his body tucked into the crook of my elbow, while his morning feed exploded from his mouth.  My urge to crawl into myself, search for some divine intervention was overwhelming and I processed all number of actions only to return full circle to this little boy who needed me.  Repeat offerings of his bottle only resulted in frantic suckling and a deposit back into the sink.   Confirmed he was dehydrated, I relented and reached for the phone knowing we would need to go to the emergency room again. 
I pinched the phone between my left ear and shoulder, waiting for the hospital answering service; the calm voice of reassurance that would direct me to the on call nephrologist.  My three-year-old sat on the kitchen floor, running cars along imaginary intersections, oblivious to the scene around him.  A fuse ran past him to my powder keg of emotions set off several times a day since his little brother and his broken kidneys entered the family. 
\My boys’ eyes told me they were born to their champion; a strong, resilient fighter, a mother not willing to give up hope because things get too difficult.  My struggle was to believe it.  With my return to work looming after several months off with the birth of our youngest, I dreaded the pending separation I knew so well.  The moments of early years were destined to be turned over to someone else. I could barely accept how anyone would be able to care for my children much less one born to panic a person with his vomiting, fevers and swollen belly.  Little did I know a story was revealing itself. Over time in my role as a police officer, I would gain a life lesson in the awesome multi-faceted role of earning the title of ‘mother’.  It did not lie only in shared chromosomes, or providing the basic needs even if those needs are a work of extraordinary complication.  It was a pull, an internal desire to nurture at any level and the heartbreaking fact as experienced in my work as a cop is some in life never have their champion. 

"S" Words

My #1 son said after school one day:

"Mom. You would not believe what one of the kids in my class said today!" Son #1 said to me as he swung his checkered back pack over his shoulder, eyebrows raised in two lower case 'n' shapes. 


"The 'S' word..."

"Which one?"

Please note.. the 'S' words in our house are not the standard version.  They include S*utup and S*upid.  These are our 'S' words. 

My son diliberated on how best to describe and dictate this particular 'S' word without actually saying it and his wheels began to turn in rapid succession.  Thinking, imagining, gesturing..

He stated the word, "Shut" then pointed directly with one finger toward the sky. 

"Ohhh." I say.  "That word.  Wow, who'd the kid say that to and what happened?"

He began to tell me with much detail the when and why this word was announced by his 9 year old classmate and in what context.  This subject may not register as jaw dropping conversation for most parents but I can guarantee you one thing, on some of the city streets I have worked as a cop, these two words render significant impact. 
Troubling as it may seem, the average person would be shocked how much this dialouge from parent to parent or parent to child alter a child's perception of the world and how they fit in it.  A child who hears these two words in my line of work are usually hearing them in a descriptive fashion to supply much needed emphasis to something they are or are doing.  This type of descriptive slap in the face is very hard to witness when standing in the middle of someone's living room, unannounced in most cases and carrying the confinement possibilities of criminal code in your pocket.

I do not have a problem now nor ever speaking up during public exchanges while on duty and these words are spoken quite often in my line of work.  I figure the least I can do is to object in the presence of others that while I am overseeing these activities on this call, those words will not be used to describe anyone.

Even in my most frustrating moments as a police officer, including one where a person in the back of my car screamed the 'C' word in my right ear about 1,239 times while I filled out paperwork, the most heard from me was "Would you BE QUIET!!!" (very loudly, I must add).  After about 2 of those attempts which were actually futile, I just laughed.

I will never call nor state the 'S' words to my children.  The lack of respect, degrading connotation and disregard for a person associated with those words are just.... well... they're just....... stu.... DUMB!

Now, I will be quiet........

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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.