Wednesday, September 30, 2015

Preemies rock!

I've long believed that babies who were born in distress...whether that's prematurity or any other kind of medical trauma...have a truly unique wisdom and a love for life. They often seem older than their years, even if they have developmental delays. Yes, they face much higher chances of problems later on, and the media usually glosses over these risks by highlighting "miracle babies." But there's a spark inside of awareness of how lucky they are to be alive...that is rarely found in full-term or healthy babies.

Check out this beautiful article featuring gorgeous photos of preemies holding photos of themselves in the NICU. Here are a few samples:

Mom and son, both preemies!

And my own preemie, shown at 24 weeks and age 18 (he's now 19):

Preemies rock! I am in awe of what they overcome.

Wednesday, September 23, 2015

An angel in comfortable shoes

Karen on the far left, with 2 other favorite nurses
The cooler weather, falling leaves, and sweaters of autumn always take me back to the NICU. On this day 19 years ago, Chris was one month old, still on the ventilator and battling for his life...still weighing less than 2 pounds.

In the midst of our family's crisis, we had many angels. An incredibly calm and competent nurse named Karen kept us grounded. She somehow found a way to get assigned to Chris whenever she was working, a true godsend for these worried parents.

In the beginning of Chris' NICU stay, he was in Level 3...initially with one nurse assigned to him, 1:1, around the clock. As he got a little older and more stable, his nurses took care of two babies instead of one. When your son is fighting for his life, knowing that he's in the hands of a highly skilled nurse can make an enormous difference in your sanity! Each time we would check in at the door of the NICU and hear that Karen or one of our other favorites had Chris, we would breathe huge sighs of relief.

Karen did so many special things for us, beyond just being a reassuring presence and taking extraordinarily good care of Chris. She gave him a heart-shaped rock to start his rock collection (any gifts to him in those early days gave us such hope). On my birthday in early October she made a card with Chris' footprints and signed it from him. She lent us a book written by a grandfather of a 24-weeker, Dear Zoe, when Chris was the only 24-weeker...and the sickest, smallest baby...on the unit. In 1996, it was the only book in publication that mentioned 24-weekers and gave us any hope for his survival. Exactly what we needed.

And most memorable was the horrific few days when Chris nearly died, after he had lived for a month and we thought we had already faced the worst. After a surgery to insert a catheter, a perfect storm series of things went wrong. When the neonatologist called us, concerned, one morning, we rushed to the hospital. Mike wrote this in our journal:
"We hurried to the unit where, to our surprise, we found Christopher to be stable. Karen—kind, calm Karen—was the nurse. Her calmness entered into us and made us believe that everything would be okay. We even inked the soles of Christopher’s feet and pressed them onto the pages of the journal we were writing. We’d seen other babies having their handprints done but, what with all the surgeries, hadn’t gotten around to doing Christopher’s. At the time, I didn’t worry about it being a bad omen, and insurance along the lines of  'if something goes badly wrong…if we lose him…at least we’ll have something to remember him by.' I didn’t suspect a crisis until the crisis was upon us."
That evening when we returned to the NICU, we knew something was wrong. All of the medical staff swirling around Chris' bedside could not stabilize his blood pressure. They tried a drug called Captopril, but he had a bad reaction to it, which sent a blood clot to his kidney. The doctor ordered a paralyzing drug to keep him still overnight.

The next morning when we called early to check in, the nurse practitioner told us we should come in right away. “Christopher’s had a rough night,” she said. “I think you should come in. Things aren’t good.” It seemed clear: he was going to die. When we walked into the unit, nurses seemed to be avoiding eye contact or scurrying away at our approach.
"The small group around Christopher’s bed greeted us tensely. The nurse practitioner, her face strained, explained that Christopher’s blood gases had been horrible. He was on the highest ventilator settings and still highly acidotic. They were doing all they could, but Christopher wasn’t responding.
What were we going to do? What was the outlook? No one could guide us. I called Father Matt and told him. Today the church was installing our new Lutheran pastor. Obviously we couldn’t attend the ceremony. I asked him to let people know and to ask them to pray. I wondered if I should also ask him to come and baptize Christopher. I mentioned it to Marie but her response was an unequivocal no. 'That would be giving up hope,' she said."

When the night shift ended, the unit closed for report and we sat in the viewing room while the day shift was briefed.
"To our great relief, Christopher’s nurse was Karen. Her calming presence was exactly what we needed. She dealt efficiently with the vent, the ever-beeping monitor, the continued horrible blood gases—and the only sign of crisis was that she was even more focused than usual."
Under Karen's practiced care, Chris seemed to stabilize that day, but in the evening, his oxygen levels were still low. But by Monday, once more grave faces greeted us in the unit. He was too quiet, not responding to lights in his eyes...neurological concerns. Karen told us that a head ultrasound had been ordered.

In the late afternoon, the results of the ultrasound were in. The head neonatologist, Dr. Lewallen, called us into a conference room with my parents and physician sister. Karen found another nurse to cover for her so she could join us. Dr. Lewallen told us that Chris had experienced something catastrophic...cerebral edema (brain swelling) and low flow to the brain...and that we should discuss how we felt about sustaining life artificially. "At this point, it appears that he has suffered massive brain damage and will not recover neurological capabilities.” He had ordered a neurological consult to confirm his diagnosis.

We were all stunned, and Karen looked like she was holding back tears. Mike held onto hope, but this was my greatest fear, and I lost it.

But when the neurologist stopped by later, he clearly saw the spark in Chris. His examination showed doll's head reflexes, a good sign, and he thought he was having a pharmacological reaction. “Call me a crusty old neurologist, but I don’t put too much faith in ultrasounds. I’d say wait a few hours and see how he reacts. He’s a tough little kid. A fighter.”

Over the next few days, as Chris eventually stabilized and rose back to his fighting self, we had a few nurses that really challenged my patience. One of them, clearly a heavy smoker who had a rough touch, even told me she was concerned he was going to become addicted to morphine! Another seemed barely out of nursing school and very nervous. I was not fond of every nurse!

I still remember my great relief when we returned to the hospital a few days later, relieved to find that Karen was back again. We knew she had been requesting to have Chris, because she was his nurse every single day that she was working. "As we would soon find out, Christopher responded in what would be his typical way: to surprise us out of our gloom."
"Karen appeared by the bedside later in the morning clutching a little white sheet of paper. She turned it around so we could both read it together. It said 'NORMAL HEAD GETTEL.' It was the ultrasound report, and it showed that Christopher’s brain was completely normal. We could not believe it, and had to restrain ourselves from whooping in the unit." 
Those few up-and-down days were not the last crisis Chris would face...but reading back over our journal entries, I'm reminded by the fact that Karen was with us during our most somber moments as well as our most happy ones.

We haven't seen Karen for years, and sadly she had to step down from NICU nursing after a head injury. Such a loss to parents and babies everywhere! The photo above is from Chris' baptism, which several of his nurses attended, and we had Karen do a reading at the baptism.

We will always be grateful for how tremendously well she took care of our very, very sick baby...and his very, very worried and highly engaged parents. Happy birthday, Karen! Thank you!

Tuesday, September 15, 2015

Walking out in peace (dear Roy)

My friend Roy retired today, after 29 years of working at my company...and as he turns 65 tomorrow. He posted on Facebook a few minutes ago:

walking in peace
into a new moment
always a miracle
just breathing in
just breathing out
love smiles

I first met Roy back in 1996--when I was just 31--shortly before I got pregnant with Christopher. I had just taken on a huge new job as publications manager of our newly expanded Northwest region, and one of my first tasks was to lay off three people in Roy's group. It was not an easy start to our working relationship...I was not a popular person in Seattle! But Roy has a huge heart and gave me a chance anyway.

Through earlier years of working together (see if you can find Chris in this collage!)
Roy's portrait of Chris, 2015
Roy has known Chris since his birth, and he's made two drawings of him--one as a baby and one this year for his graduation. He worked with me for several years as the Seattle graphics lead, and carrying the stress of being a manager in a high-pressure environment took the toll on his body. After he had a couple of strokes and heart attacks partly brought on by stress from his relentless commitment to client service, he turned his life and his health around. He teaches yoga, has become a Benedictine oblate (I call him my "Zen Catholic friend"), is a published author and committed dad and husband, and has developed a practice of visiting Starbucks and making portraits of people he sees.

Teaching yoga at my church, painting with the sustainability team,
and having brunch with Roy on Labor Day
Roy brings the fun--he's always my first choice for any kind of brainstorming, and he specializes in making people look brilliant. In recent years I've had the joy of working with Roy on our sustainability communications team, creating lively communications that move people to care for our planet. As part of this team, he's worked with and tried to keep up with many strong, fast-talking, and opinionated women (in addition to me) who send him in all sorts of different directions! 

I remember many years ago when he had to have surgery, he told his wife goodbye before going under the anesthetic....just in case he didn't wake up. He said he was ready to die because he was at peace. I've never forgotten that stunning statement. That's the way he lives his life. Shouldn't we all live that way?

Roy has deeply influenced my life as a spirit friend, artist-inspirer, and constant cheerleader. He's touched so many lives through his yoga, artistic expression, and spiritual inspiration, and he is an amazing soul. His goal in retirement is to use up his art supplies and write two more books!

A Starbucks painting

Beautiful lettering

I already miss working with him...he's just one more long-time close colleague who has migrated to the pleasant retirement shores. Thank goodness for social media, though, as he maintains an artistic Facebook page full of paintings, letterings, and beautiful words to go with his art...and I hope to collaborate with him on a future project, if he can fit me in!

Happy birthday and happy retirement, Roy! As another coworker said, you have changed my life for the better. I'm sure your retirement will be just as rich--if not richer--than your 29 years working for the world's greatest consulting engineering firm.

Here's a video our sustainability team put together for Roy, to go with his retirement book:

Saturday, May 30, 2015

Happy Graduation, Wonder Boy!

Last night my little one-pound, six-ounce 24-weeker graduated from high school! This kid, who was put on an IEP for attention-deficit disorder and math, ended this phase of his life with excellent grades and a rich, full high school experience--receiving two letters for band and drama, serving on student council for 3 years, working as a "peer helper" for 2 years, and doing over 100+ hours of community service in the past year. Last year he received his school's award for academic achievement in Algebra 2. And he's a warm, happy, resilient, outgoing, and considerate person--the best success of all!

Even though it was a financial sacrifice, I'm so glad we made the decision to send him to Edison High School, which is geared toward students who have learning differences (mostly ADD/ADHD and dyslexia). The magic is in the incredibly small class sizes and amazing, gifted teachers. Chris also took great advantage of the opportunity to participate in activities and take classes at sister school Jesuit High School. During his senior year, he took three classes there--band, drama, and pre-calculus. In the fall, he's off to study theater and English at Pacific Lutheran University, my alma mater.
Edison's graduation is also special--with a class size of 23 (one of their most accomplished and largest classes ever), each student made a graduation speech and was introduced by one of their favorite teachers. My eyes were constantly flowing, not just through Chris' speech!

Each student also received a bulging packet of letters and cards, called "palanca." Palanca is Spanish for “lift” or “to rise,” and denotes a lever used to lift and move heavy things…so these words of encouragement have the power to lift him as he moves into this next phase of his life. I was lucky to have this opportunity when I attended Episcopal Youth Encounter in high school. Here is the letter I wrote to Chris.

Dear Chris:

Welcome to palanca, Chris. I received palanca when I was in high school, and I will never forget the deep glow in my heart. You have so many people who love you and cherish you.

Early in your life, milestones became important to me. But we celebrated different types of
milestones than most parents. While they celebrated taking their babies home from the hospital, giving first baths, and visiting friends and family, we celebrated each week you survived. Every Sunday, I made an anniversary sign to put in your isolette, and we bought a new balloon in the hospital gift shop. By the time you left the NICU after 17 weeks, the nurses joked that you would float away with your 17 balloons!

So here we are with an enormous milestone: you’re graduating from high school. Of course I think back to those NICU days full of crises, fears, and joys as you overcome so many obstacles. I recall how I went into premature labor at 24 weeks gestation and my obstetrician offered me a choice: I could have an emergency c-section and you’d have a 50% chance of survival…if I chose to give birth the regular way, you would die. I didn’t miss a beat, and I chose the c-section. I knew in my heart that you were meant to live.

When I woke up from surgery, your dad told me that you were alive and you were a boy! I couldn’t believe you were alive and couldn’t wait to go visit you in the NICU. You looked like a tiny, fragile bird, with translucent skin and bruised eyelids, and with multiple wires and probes attached to your body. Your whole body was shaking because of the high-frequency ventilator breathing for you. But I thought you were the most beautiful baby I’d ever seen.

The medical staff tried to prepare us for what could happen. They said you had a 50% chance of dying in the first few days, and a 50% chance of having major disabilities if you survived. A normal life seemed beyond what we could hope for…we were just hoping for survival. But still we had hope, and we held on to it with all our might.

A few days later, I was released from the hospital. As we boarded the elevator near the maternity ward, a young couple joined us with their baby in a carseat…going home. I tried not to feel angry and jealous, but it broke my heart to leave the hospital without you…it was one of the hardest things I’ve ever done. Even harder was not being able to hold you until you were five weeks old. When you were finally placed in my arms, I felt so at peace…and so did you.

In your first four months, we prayed and sang to you each day and night. You received prayers from around the world…from people at church and your wide, extended family to people in England and even people you have never met. We prayed for your survival, your growth, and your thriving…and I imagined you as a healthy toddler running along the beach. That vision sustained me through the dark times. You almost died too many times to count…with breathing problems, infections, cerebral edema (brain swelling), and low flow to the brain.

Bringing you home after 117 days, we were terrified. You were on about seven different medications (which we had to mix up!), and you were hooked up to an oxygen tank, an apnea monitor, and a computer for a medical study. The apnea monitor told us if you stopped breathing. Can you imagine taking home a tiny baby knowing that he could stop breathing and you’d have to revive him? But at the same time, we were so happy to take you home right before Christmas in 1996. It was one of the happiest moments of our lives. When we got you home, all I wanted to do was hold you. All the time.

During your first months and years at home, it wasn’t always smooth sailing. You were such a good-natured baby, so sweet and easy-going, but you had some challenges. An MRI identified a mass of veins in your cerebellum, and a neurosurgeon told us you needed brain surgery or you would have a stroke. But when we asked for a repeat MRI six months later, it was gone. Then we had projectile vomiting, a few times a day…all over us, yourself, and our sofa. Poor you: your tummy just couldn’t handle food well enough. I remember my first Mother’s Day, trying to feed you, and we were both crying: me, because I was afraid you weren’t gaining enough weight because you kept throwing up, and you because I was forcing you to eat and it didn’t feel good. That was a hard time!

As you grew, we saw some delays in your development—mostly in speech. You didn’t talk until you were three years old, but we knew you were smart. With the help of good physical and speech therapists, you eventually got it! From the start, you did things on your own schedule. When you started wearing glasses at age three, you took it in your stride. When you had the grand mal seizure in third grade, you recovered far more quickly than I did! You began struggling with math in second grade, but last year you received your school’s Algebra 2 achievement award! With each hurdle along the way, you have leapt over it and become stronger in the process.

I am so excited to see where your life leads. I know you’ll be under pressure to decide what you want to do with your life, but here’s my advice: let life unfold. When I went to college, I thought I wanted to be a teacher. But when I actually worked in a school during my sophomore year, it was disappointing. When my Advanced Comp professor encouraged me to major in English (in my junior year), I realized that writing was my strength. But when I graduated, I had no idea what I was going to do with my English degree. Then I got the chance to teach in Japan. When I applied, I said to myself, “If I get this job, I am going to go.” I was scared, but I decided to take a leap of faith. And guess what happened? It was the best decision I’ve ever made. I had a grand adventure and met the love of my life (leading me to have you)!

In Japan
After I came back to the U.S. and married your dad, I still didn’t know what I wanted to do with my life…so I started temping and working at CH2M HILL as a receptionist and administrative assistant…then I learned about the editing department and applied to work there. After a few years there, my manager told me I’d be a good leader and made me group leader, even though I was the youngest. Then a few years after that I got another big opportunity, to manage a whole region of publications staff. I was intimidated, but a few mentors pushed me because they had confidence in my potential. Over and over again, opportunities have arrived and I’ve taken them. Success doesn’t always come in the form of a clearly marked path. Sometimes we need to follow the breadcrumbs in front of us.

Chris, I am so proud to be your mom. When you were little I called you my “wonder boy.” You are my hero. You are the most resilient and forgiving person I know, with a heart full of compassion, kindness, and enthusiasm. My heart is bursting with pride as I look back on your birth and childhood and see where you are now…graduating with excellent grades, a fantastic high school resume full of extracurricular activities, and a spectacular scholarship to PLU!!

After your last Jesuit play
Last month at your senior conference, your teachers all talked about what an inspiration you are—both to them and to other students. I believe this is a calling for you: to inspire others. You have done that from the day you were born. Your photo on the NICU wall continues to inspire families who fear for their babies’ futures. Anyone who hears your birth story, and sees who you are now, is inspired.

My hope for you, next, is that you have a fantastic experience at college. I know you will. Be open to new experiences, work hard, take chances, and continue to be full of wonder. Take advantage of all the great benefits available at PLU—the opportunity to make new friends, soak up culture and learning, and dabble in many academic areas until you find one that fits you best. How can you use your beautiful soul and enthusiastic spirit to continue to inspire and help others?

We are all going to miss you so much when you leave, but I’m excited for you. This is another huge milestone, and I want you to imagine me and your dad handing you 988 balloons (one for each week of 19 years). Let them lift you off to your next exciting stage of life, but always remember that the strings on the balloons lead back to us…your family, who love you so much and are so proud of you. Get ready to fly!

I love you, my wonder boy!


Friday, May 8, 2015

What I read in April

April turned out to be a great reading month--I enjoyed all of these books. Click the title to read my full, more detailed reviews at Marie's Book Garden...these are just brief snapshots.


The Lost Memoirs of Jane AustenThe Last Memoirs of Jane Austen, by Syrie James
I was surprised by how much I enjoyed The Lost Memoirs of Jane Austen. I've always enjoyed epistolary novels, so that helps. This book purports to be Austen's lost memoirs and tells about her unrequited great romance. I enjoyed the way she described her close relationship with her sister Cassandra and also her independence. I recommend it for Jane Austen lovers!

Rose Under Fire (Code Name Verity, #2)Rose Under Fire, by Elizabeth Wein
By the author of my #1 favorite last year Code Name Verity, Rose Under Fire is another novel set in World War II illustrating soul-deep friendships among women. Rose is an American ATA pilot and poet who gets captured by the Nazis and deposited in Ravensbruck, where she befriends Russian, French, and Polish women. She is especially drawn to the "Rabbits," the Polish women who were the subjects of the Nazis' horrific medical experiments.
The Circle

The Circle, by Dave Eggers
The Circle is like a 1984, updated to the Internet age. Young Mae Holland is thrilled to land a job at The Circle, which is like a combination Facebook/Google...a company for the cool kids. As a main character, she falls a little flat. But this book is not so much about character development as it is biting satire and a parable for our like-and-tweet-obsessed, voyeuristic culture. As each of The Circle's projects are unveiled, what initially sounds like a good, democratic, society-improving idea turns out to be creepy and sinister, reducing any shred of privacy we have left. This book made me question the time I spend on the Internet and how I too have gotten sucked into wanting "likes" or shares. It's about our need for instant gratification, coupled with our desire to know everything about everyone. Sinister and thought-provoking. 
Pope Francis: Untying the Knots

Pope Francis: Untying the Knots is the first in-depth book on Jorge Mario Bergoglio. Vallely wrote it after traveling to Argentina to interview those who knew him well and investigate the claims that the Pope did nothing to prevent the kidnapping and torture of two priests during the Dirty War. I'm fascinated with Pope Francis' transformation as a young man: he began as an arrogant, dictatorial leader who was also extremely conservative.

I used these uncommon, beautiful, sometimes deliciously irreverent prayers as my focus for the April A to Z Blogging Challenge. Each day in April I featured one of these prayers...from homages to doctors, nurses, the pope, the Girl Scouts, IT professionals, proofreaders, and angry prayers at Osama Bin Laden and texting drivers...he celebrates the miracle and muddle of ordinary life in a most beautiful way. The Daily Beast calls him "a writer to be ignored at your own peril."

Thursday, April 30, 2015

Z: Last Prayer

Today ends my month of blogging daily, meditating on author Brian Doyle's uncommon prayers celebrating the miracle and muddle of the ordinary. I hope these posts have made you look anew at the ordinary. And here is Brian Doyle's last prayer, a reflection on the blessings in his life. What would you write, if you were to be thankful for the greatest blessings in your life?

And yay for otters. They are my favorite animal too. My spirit animal. 

Z: Last Prayer

Dear Coherent Mercy: thanks. Best life ever.

Personally I never thought a cool woman would come close to understanding me, let along understanding me but liking me anyway, but that happened!

And You and I both remember that doctor in Boston saying polite but businesslike that we would not have children but then came three children fast and furious!

And no man ever had better friends, and no man ever had a happier childhood and wilder brothers and a sweeter sister, and I was that rare guy who not only loved but liked his parents and loved sitting and drinking tea and listening to them!

And You let me write some books that weren't half bad, and I got to have a career that actually no kidding helped some kids wake up to their best selves, and no one ever laughed more at the ocean of hilarious things in this world, or gaped more in astonishment at the wealth of miracles everywhere every moment.

I could complain a little right here about the long years of back pain and the occasional awful heartbreak, but Lord, those things were infinitesimal against the slather of gifts You gave mere me, a muddle of a man, so often selfish and small. But no man was ever more grateful for Your profligate generosity, and here at the very end, here in my last lines, I close my eyes and weep with joy that I was alive, and blessed beyond measure, and might well be headed back home to the incomprehensible Love from which I came, mewling, many years ago.

But hey, listen, can I ask one last favor? If I am sent back for another life, can I meet my lovely bride again? In whatever form? Could we be hawks, or otters maybe? And can we have the same kids again if possible? And if I get one friend again, can I have my buddy Pete? He was a huge guy in this life--make him the biggest otter ever, and I'll know him right away, okay? Thanks, Boss. Thanks from he bottom of my heart. See You soon.

Remember--otters. Otters rule. And so: amen. 

Here's more information on why I chose this focus for the A to Z, and you can read all my 2015 A to Z posts here. I hope you enjoy the celebrations of the miracle and muddle of the ordinary! 

You can buy the book at Brian's favorite local bookstore, Broadway Books, at Powell's Books, or on AmazonBrian's work is used with permission of Ave Maria Press.

Tuesday, April 28, 2015

Y: Your Father's Day

Thank God for feminism, because as a result our generation's men are so much more engaged in their children's lives. Increasing numbers of men are making the choice to be stay-at-home dads or primary caregivers to their children.

In my own family, my sons are learning that being a man does not necessarily mean going outside of the house to work. Sometimes the moms do that and the dads stay at home to care for the kids.

The fathers I know are heavily integrated into family life and have close, loving relationships with their children. So the uncommon prayer today is for all of those incredible, dedicated, and caring dads...especially my children's dad!

Prayer on Father's Day

Brothers, I too have spent many sleepless hours worrying about money and insurance and minor-in-possession citations and speeding tickets and endless bouts of the flu which might mean some horrifying disease. I too have snarled and barked and growled and roared at my children.

I too have sometimes, usually in the shower, wondered what crimes I committed in a previous life to be afflicted so with rude and surly and vulgar and unappreciated progeny. Yet I too, brothers, know that they are why we are the luckiest men who ever lived; and I too have laughed so hard at their capers and antics that I had to lie down for a while; and I too have bathed and fed and rocked and coddled and wrestled and played and sung with them, and believed myself at those moments to be closer to heaven than any man ever, and known that this was indeed so, even more than it was and is in the delightful throes of romantic love.

So, brothers, a prayer for us today, as we are handed useless garish neckties and Weedwackers that will soon rust and die in the shed, and scrawled coupons for chores to be done in the future; for we are blessed, brothers, and we know it in our better moments, and we pray that today is composed of only those, for once. And so: amen.

Here's more information on why I chose this focus for the A to Z, and you can read all my 2015 A to Z posts here. I hope you enjoy the celebrations of the miracle and muddle of the ordinary! 

You can buy the book at Brian's favorite local bookstore, Broadway Books, at Powell's Books, or on AmazonBrian's work is used with permission of Ave Maria Press.

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