Showing posts with label ARPKD/CHF. Show all posts
Showing posts with label ARPKD/CHF. Show all posts

Taking a Break, Need Time to Focus. Back Soon

I began this blog as a way to inspire more writing.  It has, it does.  The problem; not the right/write kind.  Thank you to those who have elected to follow, comment and inspire.  I have a goal to have a working manuscript done by end of 2011 for my non-fiction/memoir, yet I have found the blog to be.... well-a distraction.  I must however pat myself on the back for the determination to "blog regularly" as evidenced by my archive. (I honestly did not think I could do it)

So, I will temporarily sign off.  Some call it 'blogging without obligation' or just plain, "Got too much stuff going on and my priorities are a bit eschew." 

I will check in later but for now will focus on filling the pages of my well worn journal, filling another journal or two, transcribing complete chapters to the computer, revising and revising---(raising my two boys, tending to a busy husband, working full-time, taking care of our youngest son's health and being a hockey/music lesson mom.. oh, and finishing my Master's).  Of course, I will continue reading as inspiration.  I will push forward with my story I so want to tell.  Parenting, indifference, sacrifice, selfish human nature and of course, hope.  "A Mother's Purpose" (or TBD)

Bye for now.

Yes it is Friday but Don't Forget the Rest

Once in a while it hits me.  We are all here only for so long and damnit, you better enjoy every minute of it.  I think anyone who knows me would agree, I am a relatively happy, upbeat person.  I rarely am as you say, down in the dumps, sullen, blue or long suffering.  I believe my children are a big part of this and especially my youngest who has by far seen far too much "unhappiness" is his seven years. 

I must remain light on my feet.  I must be the one who "brings the party", the one who gives in to Top Ramen and cake for dinner, the one who reads just one more chapter of Diary of a Wimpy Kid and the one who is the first to know exactly when Cars 2 and Zookeeper are in the theaters.  My husband, is a great daddy.  He is ultimately the party in the pool where I usually am off in the play area or swimming around while he initiates his own game of "wrecking ball" with the boys- a rather fantastic sport where he dons goggles and slinks under water waiting for the perfect moment to catapult forward toward both screaming boys, their legs splashing with explosive energy.  He finds an ankle, a leg, an arm of a boy and drags him back where the wriggly victim is quickly consumed in belly farts and finished off with a toss in the air only to return for more.  What fun. 

I love every day.  Every moment and just this week as one of the employees in my building sighed, "Just tell me when its Friday", I stopped him and said, "Now what about the rest?  What about Tuesday at 1:26 p.m. and Thursday at 7:13 a.m. Remember, you don't know how many Fridays or Mondays or even Wednesdays you have left.  Don't forget.  Every day is Friday to me.  They're all good." 

He nodded and agreed I was right.  Our youngest son has taught us that every day.  Every day I line up his meds on the counter, one colored syringe after another.  The injections we give him weekly are expedited with a combination of a tactical stealth approach by my husband while he holds him down and I prep the spot, quickly sinking the needle into his soft skin.  This brief but traumatic event is followed up each time with much hugging and tears and "mommy is so sorry but we have to.."

And like today.  We will drop our oldest; his sensitive, attentive older champion brother, off at day camp and then head to the Phoenix Children's Hospital for an echocardiogram.  We need to check his heart.  His blood pressure has been creeping up. 

So enjoy your Friday, enjoy your days as they lay out ahead of you like balanced domino soldiers and appreciate every day you get.  Be happy  and above all love every damn minute of it. 

ASU Desert Nights Rising Stars Writer's Conference Experience!

I am well into the conference now and just found the perfect wi-fi spot as an ASU guest user.  I am on lunch break.  I have one hour to eat and attempt to blog about a wonderful evening at the welcome reception at the DNRS Writer's Conference at ASU in Tempe, Arizona!!  What an experience and a class act. 

First let me start out by saying I predicted something earlier in my blog as I anxiously turned the days of the week leading up to the conference over in my head; would I make it?  Would I actually be able to go, freely and without distraction to a 3-day conference where I may at times not be home until after 9 or 10 at night?? Really? 
Well my friends, at 4:07 am on the morning of the first day, our youngest son woke with fever.  My husband took his place as the sacraficial parent to stay home while I trudged off to a full day of work and an evening among writers and readers.  Much to my dismay, as I sat in a contract bid pre-conference, trapped by heat and 40 people firing questions to me about what I expected from the bidders, I began receiving texts my husband was on the way to the hospital with our son. 
Our youngest has ARPKD/CHF and was transplanted 3 years ago today to be exact.  So on the day before his 3 year anniversary of his transplant, he is carted off to the ER with high fever.  This was only after struggling to break the fever into the late morning.  I left the contract meeting asap and headed to the hospital.  Thankfully and as predicted, this was a routine measure due to his transplant and we were aware of that.  He has croup (learned today after recognizing "the bark") but when you have a new kidney, you  must protect it, at every cost including convenience.. the ER visit is not new to us, we were just praying he would not be admitted. 

Whew.. finally later in the day as I left work, boarded the train headed for the ASU campus, I relaxed.  The frustration was now in my dear husband's lap as he waited, and waited and yes, waited for tests, reports, IV fluids and antibiotics just a precaution.  I started to loosen the guilty pull on my internal "mommy hard wiring".  The parent child bond is as tight and as predominate in my core as breathing is natural to most people.  I had to fight this drive to flee and return to my babie's side that was really just being overplayed in my head.  Guilt is an incredible mediator...  What allowed me to let stay on that train headed for ASU were the reinforcing words from my hubby, "Hey, he's fine.. we should be home soon.  Go to the conference.."

I made it..

I walked the campus in the direction I knew Old Main sat and passed the glorious Virginia Piper Writer's Studio on the way.  Its solid bungalow style porch, invites you in to have a seat in the overly stuffed chairs, take a stroll through the rooms with their narrow doorways and enjoy the creaking of floorboards that have welcomed many a writer before. 

I came upon the impressive stair leading to the second floor of Old Main and novelled at the two or three conference participants snapping quick pictures of a mocking bird calling out from a scrawl of dead tree branches.  Half a dozen other attendees seated around the massive fountain just outside, hunched eagerly over their conference materials.  The night could not have been better for an opening reception.  The sun was just setting and the song of the fountain and soft chatter of passerby lended an inspirational mood and after checking in, I broke out the journal. 

Once inside, we were met by friendly staff and faculty who greeted each attendee with a choice to either sit at any of the marked eight-top tables or, "if you would like, you may sit at one particular table with an author of your choice."  How grand!  "Who would you like to sit with?" she asked, clipboard in hand with names and numbers listed in neat rows.  "Well, I am working on non-fiction memoir"  "Well then, you may elect to sit with Gretel Erlich, she is here at table 12"  How convenient.  Among the 22 or so tables, table 12 was to my left. 

This was like a first date.  I even carefully chose my garb.. Dark jeans, low at the waist, my favorite comfortable hiking boots, a t-shirt with a tasteful, pink long sleeve polo, untucked.  A little shabby chick or just mid forties comfortable.. Whatever.. it was better than wearing my police uniform work pants, a black t-shirt and my army style black work boots..

The table and room filled quickly and we soon went around the table with greetings including, "wherefroms and whatareyouworkingons" and besides all working on non-fiction, we were from varying areas.  One all the way from Virginia!!  Wonderful, I was born there.  We all chatted, attempting to hear ourselves and each other over the mix of similar conversation in the room.  So far the first date was going well and I felt remarkably comfortable, open and as usual, very talkative. 

The welcome remarks came from Peter Turchi and set the stage for the atmosphere I anxiously awaited.  Imagine, a room filled to the brim; about 185 in all, women outnumbering men 3/1 and varying age ranges from maybe 25 to 65, all here in various transitions in their craft of writing.  A defying struggle to do what many and most cannot: take a person somewhere they have never been through the magic of words. 

Dinner was served and the wine, yes Wine, flowed.  Gretel, a gritty, down to earth, welcoming soul, put it perfectly when our young server inquired,
"More wine?"
"More wine?  I am writer, of course, more wine!" 
We had a great laugh after that as we chatted the dinner time away with sharing of stories, travels and challenges to get the written word to transcend into reality.  It was wonderful. 

Readings followed dinner.  Lovely.  Each author was introduced by MFA students and represented the school and MFA program well.  And to think I say all this as a University of Arizona graduate!!! Yes, I am a Wildcat, on Sparky territory.............. shhhhhh

The evening ended with handshakes, nods of heads, wine in the blood and motivation in the bones.  Gretel was gracious enough to open her Master's Class to me however I had not pre-registered.  We promised to meet and chat more later. 

I met wonderful people, survived an almost missed opportunity and battled the guilt for wanting to take a moment to go my selfish way.  I took the train home and recalled what I learned and joyfully wrapped my arms around my family, happy to say;

"You know what, for a first date, this was WONDERFUL!!" 
More tomorrow!

Disclaimer:
Please be kind on my typos, glaring errors or any obvious mistakes in this post.. It is now 12:05 pm.  I am late, have my sandwich next to me, untouched and I am in a hurry!! Don't want to miss too much!!!

The Weight of a Life (final excerpt)

Thank you again to everyone who has read this short story.  It is a living document and is constantly in revision.  I do not believe any piece of writing is ever really finished until it is finally released from your white knuckle grasp and carted away only to be returned to you over and over in your sleep.  It can always be better and as long as I am my own worst critic, I guess that is not so bad. 

****************

In 2008, I made the easiest decision of my life, a contradictory decision to Margaret’s to see her children as a product of recklessness; I donated a kidney to my son.  He was four years old.  Although not a cure, it would lend to him valuable quality of life.  I am not angry with Margaret or anyone in her position but I pity them for missing out on the soul enhancing love of being a mother.  I am disappointed they allow their cycle to continue, and for not accepting help when it presents itself but instead seeking escapes.  A mother like Margaret and the children she creates will never know the word “mommy”.   
I knew somewhere a cop would come across a child like Margaret’s.  A child with an absent mother and ask similar questions about their life since cops are routinely a bit curious about others.  Like Margaret, her own mother’s parental neutrality, a result of the call to the bottle, an abusive husband or just plain too much responsibility, won her mother over and Margaret came in second in that race, maybe even third.  She took to the streets to teach her everything about life, a belief that the world was contained within the four blocks surrounding her house.  I knew somewhere another cop would make an effort on a slow night like tonight to learn about another child like Margaret’s, her belly swollen with an unknown future, a cycle that continues from parent to child.  Somewhere in his questioning, he would ask, “Where’s your mother?” and I can, with certainty predict the answer; “Who knows”. 


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...)

**************

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. 

The Centurion and the Mother

Centurion: A commanding leader in the Roman Army guiding the foot soldiers in the battlefield. 

This describes the mother.  I am just begining my journey into the bloggosphere, so bare with me.  I have no previous experience and am only capable of writing in fits and starts.  I do however aspire to document in some form or other my experience in raising two wonderful boys, holding a household and a career oriented husband together all while working full time as a member of a very large police department.  Thus the title. 

I work in my personal and professional life as a champion of children; a police officer by day and a mother full time.  I maintain the household in working order, with bills paid, dog fed, homework done, husband happy and suffer very few "casualties" as my former leaders many centuries ago.  As Primus Pilus, I lead my foot soldiers and carry their burden into battle, guide them in the ways of the world and as a further challenge and at times very dibilitating, I manage a child with kidney disease.  Yes, one of my two wonderful children was born with Autosomal Recessive Polycistic Kidney Disease/Chronic Hepatic Fibrosis (ARPKD/CHF).

My experience as a police officer has offered me one thing most mothers may not witness, an opportunity to see mothering at its best and worst.  The headlines of parental indifference are easy to recognize and offer a bit of a pull into the seedy world of sub-culture we wish to disassociate.  They are the children who have no champion. 

If anything is gained from checking in with this blog it is to recognize and offer comment to your experiences as a Mother Centurion.  You must recognize you are a leader to your children.  You have a narrow window of opportunity to garner your child's respect.  You will forever have their attention.  Losing the respect of your children lends to them a confusing and at times risky period of poor choices.  I have witnessed those choices in my career.  I am not a parent expert, I claim no formal training in child psychology and can barely spell "psychology"... however I have street smarts and a dictionary.  I have learned from my advanced and well deserved "40 something" age that over time, including 19 years with the police department, I probably know quite a bit more than the average mom on what makes or breaks a child in choosing the right path.  I have mentored 3 wonderful children in my career and currently my husband and I battle the ups and downs with our youngest son's disease.  I most honorably will inform you that almost 3 years ago, I donated a kidney to our son and gave to him what any mother should, quality of life. 

Welcome.  I will share with you some insight into a parent-life less traveled for most and learn from you as well. 

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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.