Reaching for words

As I shared last week, I took a risk. I put my words out there and entered the writing contest for Children's Hospital Oakland. It is a place we grew to know very well, and I am forever indebted since they brought Makenzie back to life. Literally. Watching her fight and have no choice but take risks daily gave me a greater sense of determination and fight myself.  I've always been a risk taker; but this last year I've taken some risks inspired by Makenzie and Emerson that were intense, nervewracking, and heart palpating. I did them without any idea what the outcome would be. 

Today, I found out I am not a semi-finalist for the essay contest out of the 220 entrants. While bummed, it was an eye opening experience.  I realized I truly want to work harder at writing and reach for more words to help connect myself with others.  The essay I went with was a variation of my previous blog post about marriage and challenges.  Since it was so hard to write, I felt it was a better choice.  It pulled a layer of honesty back to share with the world.  I hope you enjoy it. Thanks for reading it, and thanks for sharing this last risk taking adventure with me.

With much love-
Erin

LOVE….

Love is the foundation of why two people get married. With love anything is possible, right?  Actually, it is with the love, communication and an understanding that you won't always see things the same way.  Throughout 8.5 years of marriage, through every challenge, Jack and I worked together as a team.  We’ve bounced ideas and attempted to jump through the unexpected hoops together. We’ve dealt with job loss, death, miscarriage, post partum depression, relocation, and both children facing life-threatening hospitalizations. When either of us had a struggle, we'd attempt to find a solution that works.  But herein lies the challenge; the challenge that’s been the biggest challenge this past “post hospital” year for me.  That is that people cope with horrible stressors much differently, and how they cope can affect you. BUT you CAN’T fault them. Damn, you surely want to, but you can’t fault them for how they grieve. Especially if it is not the same way you do.

How one copes is how they manage to breathe.  We’ve had weeks throughout the year that came and went with neither of us communicating effectively.  Avoidance, irritation and resentment built up. That led to long solo runs for me, and staying at work past midnight for Jack.  Our listening skills with each other broke as a default of coping with the exhaustion, intensity and digestion of all that happened. It was overwhelming. Once home with both of our daughters in their beds, we had time to talk about what happened....but it was too challenging to talk.  Jack doesn't want to talk about “what if's”.  While I don't either, I needed to feel a game plan for the "what if's" because Makenzie only has 1/3 of her pancreas left.  I need to know if hospitalization happens again, we can communicate to support each other better.  The hurt and anger of times when we needed to communicate best, but were communicating at our worst, haunted me.  You can't change what words you've shared and the splinters they’ve created in your soul, but you can learn and evolve from them.

Makenzie was hospitalized with Acute Pancreatitis and multi-organ failure at 6.5 years old. Upon being admitted, one ER nurse whom I am forever indebted, looked me square in the eye and said, “Your daughter is very, very sick.  I don’t know what is going on but it’s not good and it’s going to be a long journey. You are strong and must use all your might to just love her.”  Powerful words. They described her 3 month journey in 1 minute. Any percentage, relating to a medical condition, Makenzie would defy, and not always in the right direction. However this did start with her beginning too, since she was the 2% of babies born to Moms on the birth control pill.  For some reason, she’s been ready to prove her strength and headstrong ways since the beginning.

The heaviness of hard conversations and feelings of not being heard are heartbreaking.  When you experience tragic times with someone, only the two of you can relate about those moments. While you don't want anyone to understand, it would almost be healing if there were someone else who could.  The pressures mount, especially while trying to "keep calm and carry on" for your children. And even harder...nobody talks about it.  Nobody who is married truly talks about the challenges of communication, and the hard work that goes into a marriage and partnership. Why not? I’m not saying air all components of intimate spousal fights, but if we feel the need to talk about some elements and ask for advice, why aren't we? Why do people feel they can only show their Facebook image...meaning they only share the most gorgeous moments of their marriages.

Is that honest or real?  I remember when writing on Caring Bridge I wanted to discuss how hard it was …but every third person expressed concern about the divorce rate amongst couples with sick children. I wanted to share the on-going real life elements.  The arguments in the ICU, stress releasing runs that turned into fights over hospital bills, family conflicts about what was shared online and who was able to spend time with our younger daughter, Emerson. The conversations regarding, "What if surgeries don't work and she doesn't make it?". That is REAL and part of a marriage and children.  While horrifically tough, it’s the process of going through challenges together. 

You love the other person so much you power through the crappy times to endure the BEAUTIFUL and GLORIOUS ones! You power through moments of loneliness and those of screaming bloody loud that can happen when you cope differently. You do because you know in the end that you'll be part of the winning percentage by enduring and staying together.

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

1 More Day...

As I am searching for more luck of the Irish today, being the Irish girl I am, I wanted to share a favorite of mine.  Take a peak at your favorite Irish pal, bet their eyes are twinkling today too.

---Slainte!

When Irish Eyes Are Smiling

When Irish eyes are smiling

Sure it's like a morning spring.

In the lilt of Irish laughter,

You can hear the angels sing.

When Irish hearts are happy,

All the world seems bright and gay.

And when Irish eyes are smiling,

Sure, they steal your heart away.

 

 

First comes love...

When you are falling in love, you fantasize about spending all the wonderful time together. You  picture creating a home that is your own and waking up starting each day with the person you adore.  You giggle at the memory of each dinner date, moment of new experiences, and jokes that only the two of you can understand.  You visualize getting married, traveling, having a baby, maybe a few more and exploring each day together. While you know there will be tears, in the beginning you don't incorporate the arguments and life's challenges into your love story. Why would you want to think about arguing? About tears? About life and death? Why would you want to contemplate how you have to make a joke out of having your house flooded with water on your eldest daughter's first day back to school after being hospitalized for 4 months? Why do I ask...because you should!

2006- year 2

I have been married for 8.5 years.  We have had a good marriage that has evolved every year. Heck, evolved every month.  There are incredible, many incredible memories and life experiences and we have also yet to have a year of marriage that is "boring".  People say some of the most stressful times in life are getting married, having a baby, and getting laid off.  Jack and I experienced all of the above in the first 7 months of marriage.  Year two and three we experienced another job transition, starting a new business, 2nd trimester miscarriage, losing friends to become angels.  Year four was a doosy- baby #2, me-pneumonia at 6 weeks postnatal to E hospitalized with pneumonia-pertussis-rsv (in other words told she was fighting hard for her little life) and Dad hospitalized unexpectedly with a pacemaker.  Oy vey- not done! Starting business #2 for this mama and Postpartum Depression too.  Year five to six, Jack is laid off without any severance or benefits and leave our beloved Portland  to regroup in California. Year seven, oldest hospitalized for 4 months with life threatening conditions. Year 7.5-8.5 attempting to survive and breath and laugh at the unexpected.


With the first 8 years of marriage behind us now, I am craving a year of just having fun traveling the world together as a family with NO HEAVY responsibility.  Meaning, we get to save up and not use it for medical bills or debt but to put our life on hold for 6 months and take off around the world to PLAY.  I know it is a dream because being an adult = responsibility, but I fantasize.  I fantasize about the great feeling of escaping back to those pre family memories of what you have laid out for a charmed life.  The feeling before hurt and pain, before the heartache of talking but not hearing each other. The time of looking forward to a night alone sometimes instead of a date out with your partner just to breath.  But guess what, how you plan out life doesn't always happen in your timeline and the best thing to do is embrace it.  If you push it away, it will only cause splinters to every ounce of your being. 

2007-Year 3-4

Love is the foundation of why two people get married. With love anything is possible, right?  Actually it is with with the love, communication and an understanding that you won't always see things the same way.  Through the 8.5 years of marriage in every challenge Jack and I worked together as a team.  We bounce ideas back and forth and attempt to jump through the unexpected hoops together. When either of us had a struggle, we'd attempt to find a solution that works.  But here lies the challenge, the one that has been the biggest challenge this past year for me.  That is that people cope with horrible stressers very different and how they do can affect you. BUT you can not fault them.

How one copes is how they have to manage to breath.  We had weeks over this past year that would happen and neither of us  were communicating well.  Thus avoidance and irritation and resentment built up. Sometimes that led to long solo runs for me and for staying at work to late for Jack.  We had a breakdown of listening as coping with the exhaustion, intensity and digestion of all that happened with Makenzie was overwhelming. Once home with both of our daughters in their beds, we had time to talk about what happened....but it was to hard to talk.  Jack doesn't want to talk about what if's and while I don't either, I needed to feel a game plan for the "what if's" since Makenzie does have only 1/3 of her pancreas left.  I need to know if hospitalization happens again, we can communicate and support each other better.  The hurt and anger of times when we needed to communicate best but were communicating at our worst haunted me.  You can't change what words you've shared or thought, but you can learn and evolve from them for future conversations.

2007- Year 4

The heaviness of the hard conversations and feelings of not being heard are heartbreaking.  When you experience tragic times with someone, only the two of you can relate about the challenges. While you don't want anyone to understand or relate to the challenges, it would almost be healing if there was someone else.  The pressures mount and steam comes out of ears, while trying to "Keep calm and carry on" for your children. And even harder...nobody talks about it.  Nobody who is married really talks about the challenges of communication and the hard work that goes into a marriage and partnership. Why not? I am not saying air all components of your intimate spousal fights with your best friends, but if you feel the need to talk about some elements and ask for advice on how friends cope, why aren't we? Why is it people feel they have to only show the Facebook affect...meaning they only share the most gorgeous moments of their lives and marriages.

2010- Year 6-7 - UCSF

Is that honest? Is it real?  I remember when writing all the blogs on Caring Bridge I wanted to be honest about how hard it was with Jack...but every third person who talked to us expressed their concern about the divorce rate amongst couples with sick children. I wanted to share more of the real life elements that were going on.  The arguments in the ICU, the fights when on runs together about hospital bills and who got to be with Emerson. The conflicts over communication with family, what was shared and wasn't shared online, nerves over finances and business. The honest conversations regarding,"What if the surgeries don't work and she doesn't make it?". That is REAL and part of a marriage, and while horrifically tough, it is the process of going through challenges together.  You love the other person so much you power through the crappy times to endure the BEAUTIFUL and GLORIOUS ones!  You power through the moments of loneliness that can happen when you cope differently with the cards you're dealt, because you know in the end that you'll have the best hand of cards by coming back together. 
 
Last weekend I found out of two more friends who are getting divorced.  We are at the age of first marriages ending.  Yes, rough way to start the weekend as you contemplate the heartache of others. Sadly one dear friend wants to communicate and her husband decided he is already done.  It made me think about this last year and how people who are married don't talk about the hard work that goes into marriage.  I have thought about this for a while, especially when people say about the last year, "You and Jack are so lucky to have each other. You are the best at being teammates."  Yes, they are right. We are great teammates.  We also work very hard and have lows that happen with all of the challenges we've faced. We've had times of eagerness to escape on solo trips to Hawaii, and don't feel that is actually bad.  They are real and true during some times of marriage.  Through those lows we're able to embrace the highs as we finally get through them. 

2011- Years 7-8

I guess I am writing about this to be honest. It is scary in some ways since it sheds light on another layer of who Jack and I are as a couple, but also might honor the hard work we try to put in to growing together.  Yes, we both LAUGH our arses off at life, the glitches, each other, and each little adventure.  However, we are both - now - open to therapy and working towards getting additional tools of communication to learn HOW to talk to each other so they other will hear better.  We look at our parents who have both been married for 41 years, and the hard work and love put into their time together.  They are all in love with their partners and smooch in front of us! They hold hands in public- oh my as Makenzie now teases - and look at each other adoringly. 

I ask you, how is it you and your partner communicate? How did you visualize being married and how has the vision evolved?  How is it you feel you have learned the most over the years and what is it you would love to share about real love? I know for me, I have learned so much and through each unexpected challenge know there is a light at the end that leads to greater sense of communication and support of loving each other...for all that we are and hope to be.

2012- St. Patrick's Day Family Dinner- 3.11.2012 - Our life