‘nuggs and Deep Breaths

Sometimes, you just need to take a deep breath and let it flow.  No thinking.  No analyzing.  No pondering on deep thoughts.  When I can’t think of anything to share, I just sit down and start typing.  Tonight is one of those nights.

Saturday starts, what we’ve come to call, hell week.

The 12th.

He basically died that night.

We didn’t know it until after he was transferred.  I never imagined when I saw him pass out at 10:20 that night that it would be the last time he would ever be conscious.

The next few days were full of EEG readings, IV meds, insulin as his pancreas wasn’t working, deep sedation, paralytics, seizure like activity, a ventilator, no sleep for us, breakdowns, MRI, swelling, neuro storming, despair, helplessness, and a brain death declaration.

They were also full of hope, peace, blessings, comfort, amazing friends and family, kindness, tears of purpose as organs were placed, calm, focus, drive, love, the most amazing care team and staff at UICH, and light.

I’ve been in darker, scarier places over the last year than I’d ever care to admit.  This is the hardest battle of our lives.  So often, the odds have felt so very much stacked against us.  That’s not all, though.

In this new normal, we’ve developed a deeper understanding and appreciation for life, family, love, time, friendship, and not worrying about the trivial things.  I’ve had a lot of negativity to let go of over the last few weeks.  It was consuming me.  My anger and desire to punish, pass judgement, and seek public retribution was growing faster than I could control.

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It was okay for me to go there.  I needed to move through those feelings and stop trying to bury them.  I’ve needed to be angry.  Now, it’s time to fight hard to find the light in dark places.  Thankfully, this time of year affords extra opportunity to focus on giving, serving, and forgiveness…for self and others.

Tonight, I take a deep breath and remember my lovie’s sweet voice saying, “What matter, Mom?  You k?  I ‘nugg you?”.  He never wanted anyone to be sad or upset.  Even when he lost his temper (all the time), went into full on Hulk mode, or just played too rough, he’d immediately stop to offer sympathy and kisses to anyone in need.

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Let us all honor Caleb, his upcoming birthday, and the spirit of the season by listening, serving, loving, ‘nugging, and being kind…to one another and ourselves.

-Jenelle

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