#video games provide stimulation which provides constant distraction but i need to sit with myself i need to make peace with Nothing again

[sovaharbor]

tomorrow i am going to bake and i am going to sit outside for my enrichment therapy and i am going to write more fanfic stuff and i am going to study and i am going to wear cute clothes and and and!!!

[sonsmoonstars]

Dear Jimmy, That Feeling Will Never Leave You...

Jimmy Kimmel’s monologue earlier this week stirred feelings in me that I haven’t felt in almost seven years.  It did in Tim too, he texted this morning to ask if I’d “heard Jimmy tell the story about his son” It reminded him and he needed to reach out to the only other person who had been as terrified as him. It’s easy to forget, in fact - it’s the easiest thing I have ever done to erase those days from my mind and instead concentrate on the vibrant, loveable, amazing child who runs through my house.  The first month of his life ceases to fully live in my memory in favor of savoring life with this child with the gentle soul.  I never wanted to be in that space, so I refused to live there.

I delivered Wyatt on June 10, 2010.  He was almost a month early.  My OB is a very clever man with a devilishly dry sense of humor.  With my epidural in place, he told me two great jokes, I laughed each time and Wyatt made his entrance into the world at high noon; fitting for a boy named after a cowboy who was about to begin a gun-fight for his life.

There are only a couple pictures that exist of these moments.  Like Jimmy, I didn’t notice the bluish-purple color he had become, I was too enamored of him.  I watch the video Tim took of the birth and the few minutes after, knowing what I do now--I see myself in a fog of ignorant bliss, cleaning his little eyes, touching his little hand, talking to him, holding him to me, admiring him.  What I didn’t notice then, but is painfully obvious now-- the wave of urgency that slowly overtook the room.  The growing cluster of medical professionals observing him.  I was told he needed “a little supplemental oxygen” and he might have to stay in the RNICU overnight.  I remember thinking “How on Earth will I survive the night without holding him?”  

Just like that -- the boy born on a laugh with the name of a cowboy was gone.

The next time I would see him would be in the RNICU, in that isolette, under the orange blanket.  I was later told every piece of equipment they had available to them had been used to save our boy.  He came incredibly close to being airlifted to U of M.  Not only would I figure out how to go 24 hours without holding him, in the end, I would go 360 hours without holding him--15 days.  The little piece of paper on the orange blanket said: “NO STIM” which meant he was not to receive any stimulation. I couldn’t touch him, I couldn’t talk to him.  The only way I could help him was to pretend I wasn’t there.  He was in a morphine induced coma for much of that time while it appeared to my untrained eye; the doctors tried valiantly to recreate my womb.  At 7lbs 1oz and 21 inches long, he was not able to escape the myriad of health issues premies experience.

Our only concern was our boy, THANK GOD.  Tim and I profiled a few parents who did not appear to have health insurance and whispered something like “I can’t imagine having to worry about that too.”  For a short period after that I tried to make the “Cha-CHING” sound in my head when I heard “We need to perform a procedure...” or “We need to try a new medication...” or even as I listened to the constant hum of the High Frequency Oscillator (the machine in the far right of the photo) that kept our baby breathing.  All of this kept Wyatt alive.  I became too distracted with the other issues that demanded my attention, authorization forms for blood transfusions, to insert a broviac tube, for x-rays, a chest tube.  I had the luxury of being preoccupied with my baby because “Cha-Ching” was a game I played in my head while I couldn’t sing to my son.

As time went on, our boy grew stronger.  I knew he would be alright when the NICU nurses gave him a nickname “The million dollar baby.” Watching him withdraw from Morphine was heartbreaking but it had served a greater purpose.  In the end, he spent 24 days (CHA-F-ING-CHING) in the RNICU and in dramatic fashion was released on the 4th of July, his original due date.  Shortly after his release, we received an explanation of benefits from Blue Care Network -- the nurses were almost correct -- it totaled a little over a half million dollars.  $524 thousand and change, if memory serves; my eyes strolled to the patient balance and saw a sight I will never, in all my life forget... “$0.00″

Just over a year later, my little boy who had already survived so much, contracted a severe case of the croup.  I remember sitting on the back deck the night before Halloween in the cool, night air trying to shock his lungs into calm as the nurse in urgent care had instructed me.  Without speaking, Wyatt looked me in the eye and I knew immediately he needed help.  I ran to the nearest emergency room, he was too sick for their small hospital so he was quickly transported by ambulance to the hospital in which he was born.  He was admitted and we spent the next 24 hours trying to keep him hydrated, cooled, and alive.  Cha-ching, cha-ching, cha-ching.  I never worried if we could afford any of it.  I worried about my boy.

While we have private insurance provided by our employers, not everyone has that opportunity.  Having worked in the insurance industry for several years I know first-hand that they are in the business of collecting premiums, not paying claims. The ACA isn’t perfect, but it’s a step in making the industry accountable.  It’s an effort to make insurance available to many who couldn’t have touched it before.  It has kept people alive.  No one wants to plan for Cancer or an ill child but they are realities.  We were lucky enough to bring Wyatt home both times we almost lost him, I can’t imagine my life without his long legs draped across my lap or his silly smile.  I can’t imagine Anthony not being a big brother.  Worse than all that would have been if we had lost our boy, hadn’t had insurance, and also lost everything we had worked so hard for to pay bills we would have been desperate to not have incurred in the first place.