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

Believe & Peace

Soak it in...

Believe:

Trust your intuition

Leap Fearlessly

Embrace Your Truth

Take Flight Toward Your Dreams

Feel the Abundance of your life

Collect Moments of Kindness

Do the think you never thought you could

Celebrate the gift of today

Never give up. Ever.

Peace

Noodle Swimming

I can still visualize the moment I looked over and saw the sea turtle staring at me.  That turtle made me think a lot about focus and swimming through the "noodles".

Two weeks ago tomorrow, I was training in Poipu, Kauai, and my body was getting limp.  I had done 100 burpees in the sand, 100 sand liners, countless push ups/squats and dive bomb push ups.  The beach was quiet at 6:30 am, it was the surfers and me.  Nobody else on the beach, the waves were nice and not to intense.  After doing sand training, I dove into the water to swim 7 lengths back and forth in the bay at the Wai 'o Hai.  I figured time wise it was equivalent to 1.3-1.5 miles and the Pacific Grove Tri is 1 mile.  Thus, perfect distance for training and for being in my happy place.  Swimming in open water is much more challenging than the pool, but incredibly powerful for the spirit. At least it is for mine.

I was born with the love of open water, started swim team at age 5 since I couldn't wait to hop whenever in my swimsuit...or without. I didn't care but for as long as I know water has been my healing place. It's where I feel strong, powerful, at one with myself and at peace.  It is different than running for me.  When swimming the methodic rhythm of moving one arm in front of the other, with only my inner thoughts to hear, eases me.  Jack learned this early on, and on days when I seem a bit stressed he encourages me to run to the Club and go for a swim, knowing that after I am bound to come home depleted like a wet noodle but with incredible inner peace.  My husband knows me to well and as often as I want to fight it, is right in regards to knowing what my body needs at times more than I do.

Thus, I dove into the water on this morning, stroke by stroke was feeling my lats and deltoids work.  My core felt strong, in addition to my hamstrings as I was kicking.  While swimming I was lucky enough to look at Parrot Fish, Angel Fish, the Hawaiian State Fish-Humuhumunukunukuapuaa, and many other fish and sea cucumbers.  During this time my mind started going to the question that seems to be on many of our dear friends and acquaintances thoughts these days.  The question of, "It has been almost one year since Makenzie got sick.  How is she doing and aren't you so happy it is all behind you?".  What they don't realize is how loaded the question is.  While I want to jump up and down and scream, "Life is perfect and she is forever healed!!!", it is not the case.  Is it as bad as the hospital days, heck no! We are beyond blessed and grateful for the rest of our lives that we are a solid family of four.  We have both our daughters at home with us, stronger each day, and getting more and more independent than we want to admit.  But is it all behind us, not yet, and it will be a process before it is entirely, if ever.

While we came home from the hospital right before Christmas, we have fought a long battle since.  We have learned how to live together as a family of four again.  We have learned what our real schedule of life is like with a preschooler and elementary school kid.  We learned that we all cope with stress and the various medical concerns of Makenzie differently...and it is OK.  We learned that medical bills suck, and 8 months of attempting to work hard at paying them off combined with still catching up on Emerson's medical bills when she was sick combined with a few lay offs and relocation will take a while to overcome, but is our life.  Are any of these situations horrible and horrendous in our opinion - heck no!!!  Are they trying- heck yes!!! Is that a bad thing, no, but a challenging thing when people assume months at home equal easiness of day to day life again. We are all forever changed.

Thus back to swimming.  I started to get tired on the 6th out and back. While a competitive person, I began to question if I could make it to the 7th out and back. My arms felt like wet noodles and my mind was following.  I started to feel physically and emotionally spent.  I continued my freestyle towards the sandbar and looked over at a moving object.  At that very instant I saw a sea turtle look right at me.  This turtle, I'll name him Fred, looked me directly in the eye.  He started to swim towards me and I swam a bit deeper to look right at him.  Fred swam towards the rocks and then swam back towards me.  For those of you who know me, you know I love sea turtles like I love my family.  I even have a  sea turtle tattoo that my own daughters want to emulate (when they are 30 I say!), on my back and will swim with them at any chance.  This turtle got me.  I was depleted, so depleted. And he came to me at that moment just starting me down. He went out and came back, almost to make sure I was there. He was peaceful, and I swam up and down with him for a while. Fred, the turtle, was playing in his own way.  He also, without realizing it, stood for something.  That is inspiration.  The inspiration to never give up home and to always be at peace. To me, that is what I felt.

After we played for about 7-10 minutes Fred swam away and I continued on.  That little bit of Sea Turtle inspiration gave me the energy to swim the rest of the 6th out and back and finish the 7th out and back.  It also gave me the strength to allow myself to think all of my thoughts through in regards to the question "Are we OK, and it is it all behind us now?".  Yes, life has grown and moved on. But in the past 8 months, Jack and I have learned to fight and love each other on a deeper level, both healing in our own ways.  Emerson has developed night terrors crying for her sister to stay home, and not lose her pink blanket.  She has developed a fear of doctors offices and all things attached to them...even going with me to a knee MD appointment.  She thinks doctors equate her family going to the hospital. Makenzie is stronger than ever.  She is also fearful that when she shows symptoms of distress it means she will be back in UCSF in minutes. She downplays the smallest cold (with highest fever), and on the days leading to our plane trip to Kauai she had stomach issues but said they were nothing. My inner core was full of nerves but I tried to downplay it on the outside for Makenzie's sake.  I was on the phone with her medical team and she was almost admitted.  Jack has been working tons and doesn't like to talk about when Makenzie was sick, about how it has affected our life, but only when she is well. He doesn't wants to discuss the potential(most likely reality) of Type 1 Diabetes right now, nor think that anything else can happen.  We are all coping differently and growing as we move on.

That being said, we really know how to LIVE each moment now. We know not to sweat SMALL things and to have faith that things will work out. We know that money is money, and keeping up with the Joneses isn't part of who we are or want to be, even though we are in the busier Bay Area and it's easy to get caught up in that.  We again learned LIFE is the most important thing, as are the MOMENTS we have with each other.

Yes, I thought of all of that when swimming.  I know, my mind can be on overload quite a lot. But it is at these times that life gives us moments of inspiration.  And that is what the Sea Turtle, Fred, gave me.  He inspired me to keep moving on and keep moving my body. He gave me focus again on what I was to do and where my place was at the moment.

MY own life is evolving, as is yours, every moment.  Sometimes I want to hold onto the moment where I am at for fear that moving forward means potential for more questions that go unanswered.  But after swimming and feeling my inner strength, I again felt the notion to always move forward with noodle arms and all.  Even in moments of weakness, an inner deep strength will pull through and make all of us stronger in the end.

Christmas Eve

** Emerson and Makenzie doing the Happy Dance in front of UCSF - 12.23.10 **

We are really home, Christmas Eve!! We had Makenzie's ultrasound today and got the best news that her pseudocyst is getting smaller! The nerves riding on this ultrasound brought my stomach to knots every day, Jack calling every bit to hear results, and Makenzie nervously talking a mile a minute to the ultrasound tech about everything ranging from her scars to Santa. When we hopped out of the car leaving Emerson with my sister, Auntie BB, Emerson started screaming since she was scared we were staying in the hospital again. All of us were waiting for the moment to hear the pseudocyst was smaller...and it came at 3:57 pm. While we knew we would deal accordingly if it had grown or stayed stagnant equating a visit to stay at UCSF for Christmas, we are so very grateful to have been given the gift of time together at home.

Some people think that when you get to go home, you are "HOME" and able to just move on to life as it was. But 3 months have passed, and we have a new life that has shifted in so many ways we can't describe. We are all forever changed....forever knowing that life is more precious and the biggest events can happen instantaneously. I will take all those ways though because I sit here in my favorite red chair, drinking mint tea and looking at our Christmas Tree with twinkle lights in our living room I know my two little beautiful babies are asleep upstairs in their own beds. We are lucky and while for whatever reason Makenzie was picked to endure an ultramarathon of medical challenges, we are all stronger and more deeply alive than ever before.

Little stressers of the holidays are just that, little! The big stressers are the kids unable to go home from UCSF for the holidays if ever. But also to me, the big stressers are people who never understand how precious life truly is and cherish the moments of sleeping cherub sweeties, mint tea and twinkle lights in a small house. They complain about what is not happening instead of relishing the life that is happening. One thing I am more sure than ever before is we can't control life, but can control how we appreciate and enjoy it.

Embrace every moment making silly messes in the kitchen with your family, being up with a sleeping baby who is in his/her own crib, sitting at a dinner table with disagreeing family members who make you laugh inside knowing why disagree when you know you won't see eye to eye ever but love each other...and linger longer in every twinkle light moment than you thought possible.

Merry Christmas to you and yours. Let the love of each other fill you up as my family has filled me up. With peace, love, and eternal gratitude - Erin Kreitz Shirey