My Extra Ordinary Life

Nothing is sweeter, more endearing, than witnessing your child wrap his head around the true meaning of Christmas. Because we believe that “Jesus is the reason for the season,” we have always been conscientious about finding opportunities during Christmastime to bring our focus back to Him. And let me just say, it’s a very fine balance. Santa and gifts and sparkling lights and candy will lure a child in before you can blink. Lighting Advent candles, reading the Christmas story from the Bible, and doing something nice for others can seem a little less captivating.

So for five years now, we have faithfully (dutifully) exposed our son to the real Light of the holidays. This year we are starting to see the fruits of that labor. Now, I’m not saying our kid is an angel who does not ask incessantly for more toys. Trust me, his Christmas list is a mile long and he monitors every present under the tree for size and shape like it’s his job. But I’ve also seen a shift in his little heart this year. He anxiously places the ornament on his Advent tree each day and is devoted to reading the coinciding story in his Bible at bedtime every night. He lights up at the idea of doing something helpful for another person. And is going to break the bank (aka mama’s wallet) because he insists on feeding a handful of coins into E-V-E-R-Y Salvation Army bucket. But what makes my heart so happy about his transformation this year is watching him put the puzzle pieces together when it comes to Jesus (“Gee-jus” if you ask him) and His part in the season. And this shift couldn’t have been clearer than when I took him to see a live Nativity in town a couple weeks ago.

At this particular live nativity, you walk from one reenactment to another that carries you through Jesus’ life, from His miraculous birth to His horrifying death.

*Record scratch*…what’s that you say? Why in the world would they include the hard stories from the Bible into their Christmas program? Isn’t that kind of sucking the joy out of the season?

We often think about Christmas being the celebration of Jesus’ birth. However, we have to ask ourselves, “why?” is His birth so important? And that is where the real beauty of the Story plays out. Looking beyond the incredible phenomenon of His conception…His life and death have a very poignant purpose for us. Because we are all sinners…basically horrible in most every way at making good decisions, incapable of holding back judgement of others, and selfish to our very core, etc. etc. etc….Jesus bridges the gap between us and God. Jesus’ death fulfilled God’s plan to bring us, His children, back to Him in a way that we can’t manage on our own. So when we celebrate Jesus’ birthday it is impossible not to also dwell on His death and the purpose it served.

So the night my son and I walked through this live Nativity I found myself watching my kid’s face as he took it all in. He stared in awe at the angel, Gabriel, who came to Mary to tell her she would be the mother of THE KING. He was beyond excited to see the manger with Mary and Joseph and Baby Jesus…not to mention the camels! I’m pretty sure he high-fived one of the wisemen. He gazed in wonder as Jesus rode the donkey into Jerusalem and was star struck when Jesus walked out to the crowd and put his hand on his head. And in a moment of true “Ben-ness”, he hollered out to Jesus during the scene from the Last Supper, “by the way, that’s just a tortilla!” Seeing it all from his perspective was heart-stirring. Several times I could feel myself tear up at his sweet innocence and obvious love for Jesus.

We then rounded the corner to the scenes where Jesus was betrayed by Judas, arrested by the Roman soldiers, tried before Pontius Pilate and crucified. This was our second year to experience this live Nativity. Based on last year’s experience where he was beyond intrigued by the brutality of the soldiers and Jesus’ savage death, I honestly expected my son would want to linger a while to watch. This year proved to be a very different story. Instead of intently observing he turned his face to the ground and said quietly, “let’s keep going.” I softly whispered, “it’s hard to watch someone you love be hurt.” He just nodded.

Now, my five year old son, on most days, is your typical boy. Full of energy, guns-a-blazin’, headstrong, self-indulgent and loud. But moments like these, where I witness him recognizing that his tie to Jesus is relational and not just ritual, is heartwarming.

We slowed down again when we got to the empty tomb and he listened closely to Jesus proclaiming himself to the disciples, “Peace be with you. Don’t be upset, and don’t let all these doubting questions take over. Look at my hands; look at my feet — it’s really me.” (Luke 24:36-38 MSG)

As we countdown the final days before Christmas, let us take a moment to marvel at the miracle of Jesus’ life AND His death.

“When the time came, he set aside the privileges of deity and took on the status of a slave, became human! Having become human, he stayed human. It was an incredibly humbling process. He didn’t claim special privileges. Instead, he lived a selfless, obedient life and then died a selfless, obedient death and the worst kind of death at that: a crucifixion. Because of that obedience, God lifted him high and honored him far beyond anyone or anything, ever, so that all created beings in heaven and on earth — even those long ago dead and buried — will bow in worship before this Jesus Christ, and call out in praise that he is the Master of all, to the glorious honor of God the Father.”

Philippians 2: 7-11 The Message

As I’ve written about my son’s birth story this month, I’ve realized that, even after six years, I am still processing the whole experience and probably will continue to do so for many years to come. Obviously I have moments of utter disbelief that we had to endure that kind of beginning. The sheer irony of finding myself as a mom in the NICU after working in one for years was ridiculous. Questions of ‘why me?’ and ‘why him?’ constantly lurking over me. But then I skim back through old photos and journals and see that there were, actually, many good moments…miracles even…that happened as a result of his beginning.

I went to a meeting this week where the speaker talked about gratitude. She shared the quote,

“Gratitude turns what we have into enough, and more. It turns denial into acceptance, chaos into order, confusion into clarity…it makes sense of our past, brings peace for today, and creates a vision for tomorrow.”

She encouraged us to think of a time when life felt chaotic. She had us envision that time in the palm of our hands along with the truths of that experience, both good and bad, on our fingers. Then she told us to focus on the truths that make you grateful and the other things will take the back seat…opening your eyes to gratitude, even in the hard times.

The timing of this talk couldn’t have been better because honestly, my child’s birth and NICU journey were a paradox to the introduction into motherhood that I had dreamed about. And although I’m typically a positive thinker with a sincere faith that things will come out on the bright side, I can also have a hard time moving on.

So I’m taking my cue to dwell on the positive things from our NICU adventure. Not forgetting the hard times because they can make me grateful too…but choosing to reset my focus in order to experience true gratitude.

First and foremost, I would have to say that the best thing that came of our journey was that our son survived and is an active, healthy kid today! I have to accept that the timing of his birth was divinely planned. When you hear a doctor comment that he would not have survived another day in utero, one has to acknowledge that it was well orchestrated. He was born on December 29th and our regular appointment that week was on the verge of being cancelled because it was between two major holidays. Based on the doctor’s statement, no appointment that day meant no baby the next. That alone takes my breath away. He may have been delivered nine weeks early, under some unsavory circumstances, but that was exactly how it was meant to be.

Secondly, if I’ve heard one person say it, I’ve heard a thousand people declare that my son couldn’t have asked for a better mommy because I had worked in the NICU for so many years. And although it irked me in the beginning to hear that sentiment, it did prove to be a key to surviving our adventure and building my confidence as a new mom. Heck, I think we might still be in the NICU today if I hadn’t noticed that our son’s heart rate drops were just because he was trying to poop and not because his heart wasn’t responding well to his medications. My work experience gave me a perspective into his care that a lot of NICU parents don’t have. There were so many moments, as I sat by my son’s bedside, where I wanted to holler to the other parents, “believe in yourself, believe that you really do know your baby and are an important part of the team!”

I also recognize that it may not have been the best start, but we also avoided some of the major complications of being born early and that ultimately, his heart condition didn’t require surgery and responded well to medication. We may have had a multitude of caregivers during our forty days in the NICU, but in the end, the ones who were his primary doctors and nurses were calm, open-minded, respectful of my experience and interested in working with us as a team. While in the thick of it, all the different caregiving strategies would leave us feeling out of control and unimportant in his care. But our regular doctors helped the team keep things on track and honestly did keep the seesaw of care at a minimum while we were there. It says a lot when you can go back each year to visit and there are a handful of staff in the NICU who remember your story as well as you do.

I would also be remiss to not acknowledge that we had incredible support from our families and friends during our whole experience. Our son was loved by so many from the very moment he made his early arrival. I’m not gonna lie, his social media following might have made me jealous at times. He has always had a gigantic cheerleading team behind him! And we did too. We quickly created a blog for our journey and were always amazed by the encouragement, love, and prayers that we received every day. With a limited visitation policy in the NICU, we might not have been able to physically have many people right there with us, but we always knew we could log on and feel the love whenever we needed it.

Last, but definitely not least, I am proud of how our marriage endured this ordeal. Traumatic experiences like this can really throw a wrench in the works and we could have easily derailed. But quite the opposite happened for us. My husband, a natural encourager, was such a strong support for me and patient beyond belief when it came to dealing with a hormonal, post-pregnant lady going through her own, personal nightmare. Poor guy. It was definitely a time in our marriage where one person’s strengths picked up the slack for the other person’s weaknesses. We made such a great team! And consequently had some very memorable moments during our time in the NICU that we can look back on with a smile.

Life’s circumstances are different for everyone. Some people have factors much harder than ours while others have the fairytale birth and perfect newborn. In moments of denial, chaos and confusion, we have the opportunity to set our focus on the things that are happening that will lead us to finding gratitude in that time and ultimately acceptance, order and clarity.

So in this season of Thanksgiving, I can honestly say that I am thankful for our son’s crazy beginning. It was not always a walk in the park, but for us, more good came from it than bad. If I hole up in the hard moments that surrounded his birth, than I deny myself the opportunity to see how gratitude, even in the hard things, “can make sense of our past, bring peace for today, and create a vision for tomorrow.” My son’s story will follow him for his whole life and is the very foundation of who he is and will become.

“Hardships often prepare ordinary people for an extraordinary destiny…”
-C.S. Lewis

I don’t think we ever realized we were sitting in a labor & delivery room that day. The thought never occurred to me that other people were there, having their own normal birth experiences in the room next door…because I wasn’t there to have a baby that day.

A sonographer came in and did a full body scan of our baby as part of a routine visit to the perinatal specialist. By then the midwife arrived to offer support for me and my husband. We all gazed at the sonogram screen, in awe of our baby’s seemingly perfect little body. The sonographer even commented that he had a head full of hair and then pointed at it swaying back and forth in the amniotic fluid. It was hard to believe that anything might be so wrong with him to warrant the news we received next.

The hospitalist, a total stranger, walked into the room and sat down next to my bed. She looked at me and matter of factly said, “the specialist has had a chance to review your baby’s sonogram. He is too busy in his clinic to step away right now. But based on his review, your baby is in heart failure and has hydrops fetalis. We are going to have to deliver your baby today.”

You could hear a pin drop. Quickly followed by me gasping, “son of a bitch.”

To this very day, I don’t know why those were the words that I chose. Maybe it was because I realized we were about to live out one of my worst fears of becoming a NICU family. Perhaps it was because I had known many babies over the years who did not survive that particular diagnosis. But in that very instant, our whole plan changed.

As soon as the staff heard the plan, they jumped into action. Scurrying around to get me changed into a gown and get an IV started…all the things I had asked them to postpone earlier because I wasn’t sure it was going to be necessary. I looked at the doctor and said, “I want to meet the neonatologist who will be taking care of my son.” She looked at me, alarmed that I would delay things, and said, “you do realize this is an emergency, right?” In my head, it was important to put a face to the person who might be the only one who ever got to hold my son while he was alive. I must have given her a *go to hell* look because she turned to one of the nurses and asked her to page the neonatologist.

While we waited, I told the doctor that I wanted the operating room to be quiet. I didn’t want to hear her talking about what she was doing and I didn’t want to hear the staff chit-chatting about their Christmas holiday and I sure as hell didn’t want to hear Guns ’N Roses, “Sweet Child of Mine” blaring from the radio. I was trying desperately to control something.

Somewhere in the midst of wrapping our heads around what was happening, my husband called our folks, who immediately dropped everything to come to town. The whole thing was so far from what I had envisioned. No excited phone calls. Never experiencing one single contraction. Trapped in a hospital bed with monitors and an IV. Fearful that my baby might die. I mean…come on!

The whole experience in the operating room was a blur. There were troops of nurses and physicians to take care of our baby…so many that I couldn’t even see the warmer where they took him. My husband sweetly seesawed back and forth between me and our son…giving me little tidbits of information. But honestly, it was such a colossal shit storm, that all I could do was close my eyes and tune it all out. The only thing I could feel were the hot tears rolling down my temples.

I insisted that my husband go with our son to the NICU. And in a matter of moments, there I was…ALONE. Not really, there were still people swarming around me. But my heart was not there…it was somewhere else in that hospital…a place I hadn’t been to, but knew all too well.

They finally took me to recovery. I remember asking the nurse if she knew if my baby was still alive. She looked at me, alarmed that I hadn’t heard anything and said she would give the NICU a call. She quickly reported back that he was stable…beyond that, I have no idea what else she told me. She brought me my things and I dug out my phone. For some reason, I felt it was necessary to text our dog-sitter to see if he would go check on the girls. Then I texted my boss to let her know that I wouldn’t be in the next day. It was all so surreal. I had no idea what was going to happen next. And I was alone.

They eventually took me to my room where my husband finally found me. I learned that my kiddo was already playing tricks on everyone…making the doctors scratch their heads about how to bring his heart rate down from 300. Yep, you heard me right. That very morning his low heart rate that caused great alarm was now beating almost 300 times per minute.

I remember my husband showing me a picture of him. All I felt was disconnected. Was he even real?

Friends and family started pouring into my room. I put on a courageous smile but deep down, I was dying inside. Why had it all gone to pot so fast? Why me? Why my kid?

Seven long hours later, my nurse finally asked me if I wanted to go see my baby. I was anxious to get in there…to talk to the doctor, meet his nurse and see what all he had going on. It’s so bizarre when I think about it…I was so far from maternal in that moment. I was in work mode.

He was in a small room in the corner of the NICU. A private room reserved for the critical babies. The room was dimly lit but completely overwhelmed with medical equipment. His nurse, Thad, met us at the door. He quickly recognized me because we had worked together several years before at another hospital. I remember walking up to my son’s bed and peering into his incubator. His little body was so swollen and covered with tubes. Thad commented that he was a handsome boy. That was the first time I can remember having a proud mama moment. If anything, we had made a pretty baby.

Unlike most NICU parents, I wasn’t afraid of all the equipment and I didn’t wait for his nurse to invite me to help. I jumped right in when it was time to change his diaper and take his temperature. I confidently repositioned him, calming him with my hands and shielding his eyes from the lights.

Although it was all very familiar, it was also so alien too. This time I got to love this baby and call him my own. That little detail was what helped me feel connected to this little being in a way that I hadn’t before. It was what kept me from being a robot with my own child and allowed me to feel and see the whole NICU experience through different eyes.

The road ahead was going to be filled with hard times. I had to take my cue from my own kid, who was already proving that he was up for the challenge. I was going to have to dig deep and lean into this detour to motherhood. Because if I didn’t, I was going to miss out on loving this boy when he needed me most.

I spent most of my career working in the Newborn Intensive Care Unit. I’ve always been drawn to the medical field but never had the wherewithal to endure all of the science classes to become a doctor or nurse. If I’m being really honest, it makes my stomach turn when I think about handling someone’s bodily fluids or having to stick them with a needle. But I loved the idea of helping people through their experience in the hospital which lead me to becoming a child life specialist. Add my infatuation with babies and I found myself in the NICU. I was there to support families through their NICU journey and provided parent education, sibling support and partnered with the NICU staff in developmental care for the babies.

I was an advocate for family-centered care. That particular philosophy always struck me as an oxymoron in healthcare. People, at their most vulnerable times, have to entrust their lives to complete strangers. Strangers, who by the very nature of their profession, are caring individuals. But, somewhere in the business of healthcare, the person gets lost. And thus, family-centered care…a team approach to caring for a person that also empowers the patient and their family…became the catchphrase for healthcare to do what they should have been doing all along.

Soapbox anyone?

Anyhoo…I started my career with gusto. I naively assumed that the medical staff would be interested in doing whatever they could to promote a sense of family in the midst of a unit that was a whirlwind of activity with row after row of critically ill infants. I was dumbfounded every time I had to ask if a parent could hold (or even touch) their child. Shocked when I saw post c-section moms sitting on a swiveling office chair crammed between all the medical equipment and beds. And bewildered when I would walk into the unit, where research encouraged us to provide a healing, quiet environment, to country music blaring at the bedside, lights glaring and the staff chattering away about their weekend.

And I’m not saying that I never found myself getting caught up in the pace of the unit…doing the very things that irked me so much for the sake of not being the squeaky wheel all the time. It was a catch 22. Fit in with your team? Or be the outsider, the one they all rolled their eyes at when you walked away.

But ultimately, I was passionate about my purpose in the NICU. I wanted desperately to see these new moms and dads connecting with their child and be considered an expert in their care. So I pushed the staff to slow down. To find opportunities for families to be involved in their child’s care. To put themselves in the parent’s shoes and consider what it would be like to have a foreigner doing all the things a parent wants to do with their newborn…intruding on one of the most precious of times. Pushing them to find ways to partner with families instead of making them feel like unwanted visitors. Being mindful to not let the monotony of work creep into their ability to be empathetic to the very people who created the patient that they were laboring over.

I grew jaded after years of fighting for “common sense care.” Changes came at a snail-like pace and I couldn’t stand up to “The Resistance” any longer. Reluctantly, I abandoned my post…the families and their babies. I was worn down and angry.

I virtually swore off Western medicine…opting for natural remedies, acupuncture and going to the chiropractor. I was determined to do everything in my power to stay away from hospitals. So when I got pregnant, I chose to go to a birthing center because it aligned with my need to have a natural experience and wanting my voice to be heard. And I received excellent, supportive care there throughout my pregnancy. I felt empowered to make decisions for myself and my baby. I felt surrounded by providers who listened and valued my opinion and experience. It felt right.

When I was twenty-six weeks along, the midwife heard a slight murmur during an ultrasound. She calmly explained what she was hearing and presented the choices we could make for our baby to ensure that everything was ok. When the murmur persisted at our next appointment, she was supportive when we opted to make an appointment with a perinatal specialist and even offered to go with us. At no time did we feel rushed in our decision. And we know now that our choice to wait it out for a couple weeks ultimately gave our son a little extra time to “bake” so he could endure the battle that was ahead.

The day of our appointment with the specialist we also had our regular appointment at the birthing center. I remember walking out the door that morning, patting the dogs on their heads as I was leaving. I commented that we had a big appointment that afternoon to make sure “brother” was ok. I *might* have asked them to say little prayer. I had no idea what was coming…

We went in that morning for our group appointment, eager to learn more about taking care of our baby along with how to bravely face our labor and birth. At the beginning of each appointment, the group gathered in the birthing center’s living room. We would visit while we each took turns with the midwife who checked our measurements and listened to our baby’s heart. Everyone was excited to be on the final leg of our pregnancy journeys…just ten weeks left! We eagerly shared favorite names we were considering and talked about our baby registries and upcoming baby showers. It was hard not be excited about the big changes we faced! However, in the back of my mind (and my husband’s mind) was the appointment looming that afternoon. Would the doctor confirm the midwife’s assessment and give us the go ahead to stay at the birthing center? Or would he find something bigger? And if he did…what would that mean for us? For our family? For our baby?

We stepped away from the group’s chatter for our turn with the midwife. One minute, we are happily visiting with the group…the next minute, we witnessed the midwife’s face turn ghostly as she strained to count our baby’s heartbeats. She calmly told us that his heart rate was low and asked when we were supposed to see the specialist. Nervously, we explained that it was scheduled for 3 o’clock that afternoon. She reassured us about our decision to see the specialist and mentioned that she was just going to give his office a call to see if we might be able to go in earlier that day. In a fog, we returned to the group while she phoned over. Seconds later, she popped her head in on our group and waved us over. She told us to head over to the hospital down the street and that the specialist would meet us at labor & delivery.

We blindly walked into the hospital at 10:30 that morning, never fathoming that we would be facing the most terrifying experience just a few short hours later.

It was like an out of body experience. Here I was, in the very place I didn’t want to be. And as the labor & delivery staff whirled around us, I could hear myself calmly saying to the nurses, “no, I don’t want to change into a gown yet” and “I’d like to see a doctor before you to start an IV.” Without intending to, I was “child life-ing” for myself. Insisting that the staff slow down until we had some answers. I was diplomatic, but I demanded they treat me like an individual, not just checking off their admission list.

Since I had worked in the hospital setting, I knew what this flurry of activity meant. No one would come right out and say what was happening, but my gut was telling me to gear up for the worst. Deep down, though, I was also eerily peaceful. I knew, without a shadow of a doubt, that God was right there. I might have shook my fist in His direction when reality hit. In hindsight, though, I have to give Him a nod because He was also using all my experiences in my career (good and bad) to prepare me for such a time as this. He had this covered and I could not doubt, in that moment, that He had already orchestrated every moment of my son’s life up to that point and was not about to stop now.

In honor of Prematurity Awareness Month, I will be sharing our son’s birth story. I hope it inspires those who have gone through it to see the raw beauty in their own experience. May it also be a reminder to those who provide care in the NICU that they are joining a family in one of the most traumatic, beautiful, heartbreaking, and treasured times they will ever experience.

My son’s kindergarten class started their weekly visits to the school library a couple weeks ago. Of all the books in the library, he brought home “The Silk & Spice Routes: Cultures & Civilizations” by Struan Reid. He’s five and thought this book would make for a good bedtime story.

As we drove home from school, I asked him what made him choose that book? He said that it was about indians and that there was a picture of a guy playing a horn. Fascinated by all things cowboys & indians, I’m sure he assumed, from his perusal of the pictures in this book, that he was sure to learn more about the Native Americans that he finds so captivating.

When we got home, I took a look at the book and quickly realized it’s content was way over his head and almost mine. In an attempt to connect with something that grabbed his attention, I skimmed through it and came across some interesting little tidbits.

I just *know* these little factoids are sure to enlighten you.

• The silk and spice routes stretched across the continent of Asia and into Europe starting in 2000 B.C.
• The silk routes were by land and the spice route were by sea
• Cultural influences also traveled along these trade routes
• Trade influenced significant things like religions, artwork, architecture, and currency to goods like China settings, silk, carpet weaving, clothes, and jewelry
• Silk was first produced in China in 3000 B.C.
• Tea was introduced in the 8th century AD by Buddhist monks in Japan
• The first form of alcohol was made from “koumiss,” the fermented milk of mares
• Marco Polo brought pasta to Italy in 1295 after visiting China
• Black pepper came mostly from India until the 18th century
• Decorations and statues in Islamic mosques do not contain people

Stay tuned for more of my book reports from my kiddo’s library selections!