Percentages

This week I became part of a percentage of people who entered Children's Hospital Oakland Notes&Words contest.  The challenge was to write an 800 word essay about your kid being sick, illness, life, parenting, divorce, adjustment, and everything in between.  Two of my favorite writers, Kelly Corrigan and Anne Lamott, are two of the judges.  Thus, a new percentage to add to my runner up essay title "Percentages"(it is the essay that I didn't submit).  The one I did submit is titled "Love". Crossing fingers they like it. ;) 


Enjoy....and thanks for reading.  xoxox Erin
 

Percentages-

Less than 2 percent of people get pregnant on the pill.  Ding, that’s our Miracle Makenzie.  Less than 2 percent of children get diagnosed with severe Accute Pancreatitis and mutliorgan failure. Ding, that’s Makenzie.  Less than 5 % of these cases get psuedopsysts that don’t drain independently.  Ding ding ding…that is Makenzie Christina Shirey.  To say that she defies the odds is an understatement. When every doctor, nurse, and Medical Director whispers they’ve never seen a case quite like your child, it is not a  percentage you want to be in. Especially when your child is at a hospital known for dealing with rare pediatric cases. All the while, every concerned family and friend says, “You know the percentage of parents who get divorced over hospitalized kids is huge”. Really, that percentage too?? Can’t there be a guaranteed percentage we fall into titled, “The percentage of families who face unfathomable situations and come out stronger defying every odd?”.  We’ve embraced the phrase Embrace Life’s Challenges because we don’t know how to live otherwise.

ICU- Day 6

Brilliant eyes came back- out of ICU, 3rd floor

Bug eyes, it’s what Makenzie had when I walked in the room. Who knew that 18 hours of stomach flu would evolve into a hallucinating 6.5 year old who looked like she just took acid.  I’ve never dropped acid, but I’ve been around friends who have, and their eyes reminded me of my innocent daughter’s. How was that possible at age 6? I know the time would come in the teen years to discuss drugs and bug eyes, but not in first grade.  Eyes as big as saucers, extremities frozen with body warm, and foam coming out of her mouth like a dog carrying rabies.  My Miracle Makenzie morphed into a manic child who didn’t recognize me, her Mother who has been her biggest cheerleader since seeing the two pink lines 7.5 years before.  In the ER waiting room, she seized in my arms and was rushed into the OR.  One doctor, another, whispers, tubes and hushed words filling a bubble cloud in the room full of “brain damage, meningitis, dog bite, rabies, organ failure, spinal”. But no words directed towards me, the Mother of the sweet little girl splayed on the operating table in her favorite yellow daisy nightgown. She looked like an actress auditioning for the tv show, “ER”, not my kid. I shared stories hoping she’d be soothed by my voice. Instead she was paralyzed by all going on around her and couldn’t give me eye contact.  I was craving that connection; the comfort that “she” was still there and would continue to defy odds.

Week 3.5- Emerson and Makenzie finally got to see each other! Sister love.

In the ICU for the 10 days after, we finally got the diagnosis of Accute Pancreatits.  Really, what adult alcoholics get is what brought my daughter to the hospital? “We may be Irish, but not that Irish!” was all I could say to help create laughter.   We needed laughter.  From the ICU she was hospitalized and had 3 surgeries and countless procedures.  Picc line infections, daily vomiting, NJ tubes, IV’s, blood draws, nurse strike, chapel, wagon rides, pole races, sibling visiting hours, ultrasound, MRI, small percentages and new normal were our “new normal” phrases.

music therapy

Makenzie finally recognized me with her dynamic Hazel eyes on day 2 of the ICU, and from there we connected each moment with eye contacts.  Words spoken through looks raised brows, fishbowl-full tear eyes, frustrated narrow brow, and exhausted red streaked eyes.  She’d close her eyes for peace, but listen to every word spoken around her. She wanted to hear that she’d be the winning percentage to make it home unscathed …so did we. 

How do you know you’ve made it to the other side of a winning, “made it”, percentage, when each day is a struggle to continue plugging forward? We know we can’t live in daily fear of Makenzie getting sick again, but it is ever-present.  And how one copes with that is different; the stressors of a hospitalized child and a young toddler eager for her family to come home.  What is the guarantee for a family fitting back together, once all grieve and cope the lost feeling or normalcy? There isn’t. You’re never guaranteed that.  But you have to work your arse off for it to happen, and work incredibly hard allowing yourself to live in the moment. 

You aren’t guaranteed when saying “I do” that you’ll experience horrific stressors, with the ability to cope and nurture each other the way you need to be treated.  Odds are it won’t happen. Odds are you’ll have to work incredibly hard on your relationship, while simultaneously nurturing your post hospitalized family.  Honestly, these elements are almost as challenging as having a sick child. Why? Because as an adult, you wish your partner could have superpowers like a mind-reader.  The depletion from medical bills, keeping peace, and maintaining balance is there and you can’t bear the energy to nurture someone else too. But you do. You do because you want to defy another percentage and make IT. You push through the post hospital trials to make it to another percentage the doctors can tell new ICU families. That of a family who had every odd stacked against them and is now thriving. The family whose daughter once had bug eyes but ended with big brown hazel eyes shining brightly.  Because beating the small percentage was what they were supposed to do. 

How we knew normalcy could happen again- weeks between CHO and UCSF at HOME! November 2010