Living Fierce: From Chaos to Stability

By Lisa Greer

Lisa Greer's world was turned upside down during the life-threatening birth of her fourth child, Joshua. Between Joshua's 111-day stay in the ICU ("NICU"), providing care for him, keeping her family together, and staying sane, she was living in constant crisis.


 


After much pain and struggle, Lisa rebelled against her despair, buckled down, and resolved to make sense of the confusing world of overseeing the care of a child with a genetic disorder. She used her gifts of tinkering and process improvement as tools for success.


 


What emerged from her resolve and determination is the system Lisa invented called the S5 Shield that breaks down managing life as a special needs family into a step-by-step process. The S5 Shield provides protection from disaster through a simplified, easy-to-learn format. She uses her system every day to keep chaos under control and maintain stability for herself, Joshua, and Team Greer.


 


Living Fierce allows readers to walk side by side with Lisa as she courageously shares her experiences while teaching the S5 Shield system. With the tools the Shield System teaches, readers will be positioned and informed to succeed at life as a special needs family ("Specialfam").


 


If you, a loved one, or someone you know is struggling to cope with the personal and resource challenges that come with caring for someone with special needs, Living Fierce can help. This book is designed to pull those affected back from the edge of emotional despair and provide a proven road map from chaos to stability.

• Language: English
• Publisher: Special, Inc.
• Release date: May 14, 2024
• ISBN: 9781662943157

Book preview

. 1 .

THE HERO’S CALL: THE BIRTH OF JOSHUA GREER

Adversity does not build character—it reveals it.

—James Lane Allen

As a mother, I do what is necessary to protect my children…

On April 25, 2014, at 1:15 a.m. in UCSD Medical Center in San Diego, California, my fourth child, Joshua, and I found ourselves in a perilous situation during his birth where his life swayed unpredictably back and forth over the chasm between life and death.

In the hours after 1:35 a.m. when my son Josh was born, I was in shock. I lay exhausted and frightened. I felt so weak and helpless. As I lay shivering on the bed in the delivery room with the code blue light still on and my son having been rushed to the neonatal intensive care unit (NICU) by the pediatric emergency team (PEDS) team, I felt like I was in spinning in the eye of a storm.

So much was happening around me, and I was having a hard time making sense of it. There were doctors and nurses everywhere, coming in and out of the room and coordinating with each other. My husband, Neil, was in the delivery room, leaning over me as often as the medical team would let him comfort me and give me information. It was like watching a movie. Then again, maybe it’s more accurate to say it was more like I’d gotten cast for a lead role in a movie, but no one had told me whether it was an adventure or horror flick, and there was no script.

* * *

Two days prior to the birth, my health and that of my unborn child were completely normal, and the entire family was in good spirits. I had passed my final predelivery mom and baby health check a week prior, and the fetal heart rate was great. I had a nanny working at the house leading up to and after the delivery. Neil was home from work, managing logistical details and keeping our kids, Robbie, Megan, and Mandy, on schedule with their activities. What’s more, we were even able to fit in a full family photo shoot with all of us together.

Check, check, and check!

Our due date was April 30, 2014, and this momma was ready to welcome kid number four into the world. Spring had arrived, and I felt so amazing and pretty—the way only an expectant mother could feel.

On April 23, a week before the due date, I started to feel small contractions in the night. I let my OB/GYN know, and she said it was normal so close to the due date. She advised, however, to let the family know to have the bags in the car as a birth could come quickly with a mother who had had multiple children. Believe me, I had heard this advice before, but I still labored for quite a bit of time with each child. These early contractions felt different from my other labors, so I felt we should be ready well in advance, and I let my husband know. We packed up that night, and Neil and the kids loaded up the car before we went to bed.

The next day, it was Neil’s birthday. We woke up and had a morning birthday celebration. I live for birthdays, but I wasn’t feeling so well, so we kept it low-key. Everyone had a keen sense that today might be the day my water would break and I’d go into labor. Sure enough, that afternoon, it happened.

We lived forty minutes from the hospital, so Neil kicked it into high gear and worked with the nanny to make sure she had everything in hand. They begged me not to insert myself into their logistics conversation, but I had to be in on the team meeting as much as I could.

At 4:00 p.m., we then left the children in the care of the nanny and began the drive to UCSD.

Here we go!

With the births of Robbie, Megan, and Mandy, I checked into the hospital; they took my vitals and that of the child, and then the doctors had me walk around the area for several hours before they felt it was time to admit me. On this occasion, we arrived at the hospital at 5:00 p.m., parked, and checked in with the labor and delivery unit of UCSD Medical Center in Hillcrest—well known in San Diego and beyond for taking top-notch care of mom and baby. All my other kids were born there, and I knew I was in great hands.

During my mom and baby check-in, the nurse listening to me and my baby’s heart rate looked up with a concerned look on her face. She said she was detecting a larger-than-normal rise and drop in the fetal heart rate. She called the doctor, and she listened in as well.

The doctor looked at me and said, Not to worry, we see this type of pattern of heart rate sometimes. But just to be sure, let’s go ahead and get you admitted now. She told Neil he could go to the car and get my things and they would get me to my room.

And right then, when the doctor told the nurse to take me to the room in a wheelchair just to be safe, I felt my heart rate flutter. Down I went into the chair—fastened in, no less—me in the care of the doctors and my husband hustling to get my things from the car. I wasted no time asking questions of the doctor. She reassured me that all was well but did tell me they were going to keep an eye on the fetal heart rate pattern and be ready to deliver as soon as I was settled in the room.

It only occurred to me days later that they had placed me on the hospital floor where a NICU was located, and my birthing room was next to an operating room. A part of me was glad I didn’t realize where I was being placed to give birth. Though concerned, I remained in good spirits on the way to my room.

By this time, it was 7:00 p.m., and at the direction of the nurse, I got dressed in a hospital gown, used the restroom, and got into bed. I had brought all my little things and my favorite robe that kept me calm. I immediately draped the robe over me. Unfortunately, they didn’t allow you to burn candles in the hospital. I loved candles, so I just kept smelling mine without lighting it and put lavender in my eye pillow. Every mom has to have her go-to labor and delivery gear, right? (My secret weapon was, during labor, I always wore my eye pillow with lavender in it—worked like a charm!)

As the evening went on, they kept checking the mom and baby heart rate, and now the whole heart rate fluctuation started to become more of a mystery. My heart rate continued to be normal but beating faster, obviously. The fetal heart rate was starting to concern the doctors even more now but for reasons I didn’t fully understand. The heart rate had normalized, but every five minutes or so, the heart rate would drop for ten seconds and then come back up. That sounded okay to me, but the doctors started to call more people into the room who stayed put, and the attending physician wasn’t farther than a couple of rooms away. Then the fetal heart rate just went normal for a solid hour, so much so that the nurses told Neil to go grab a bite to eat downstairs and take a break as it might be a late-hour birth.

As if on cue, five minutes after Neil left to eat and get a break, my contractions started to come closer together and faster than I had ever had. The fetal heart rate was now doing bigger jumps up and down. This process continued for a half hour, at which point the doctor had Neil paged, and by the time he was back in the room a few minutes later, I was in full-blown labor. They were the kind of contractions that told you it was going to be a rough ride.

The nurses attended to me, and I could hear the muffled voices of the doctor talking to Neil in a very businesslike fashion. I could tell they were going over a lot of details—fast.

The doctor then came back to me and said, Okay, Lisa, there’s a growing issue with the child’s heart rate, and it is no longer safe to have him in the womb. So we are going to move the labor along and will need you to push a little faster and harder than you normally would, okay?

I saw Neil over the doctor’s shoulder. He came up, gave me a kiss, and told me it would be okay. As he backed away to the back of the room, however, he crossed his arms like he did when he was concerned. He and I locked eyes, and that helped me focus my energy.

So we began the process of trying to bring my child into the world.

I need you to make your pushing intervals shorter, but push harder, Lisa. You can do this, the doctor told me.

Though I couldn’t see what was going on or what the doctor or nurses were doing as they attempted to complete the delivery, Neil would tell me later that the medical team was constantly looking back and forth at the fetal heart rate monitor. The monitor showed the heart rate now dropping significantly and then recovering for a minute or two before beginning another nosedive.

Push, Lisa, the fervent orders continued.

Then I heard something I never want to hear again. Ever.

The heart rate is crashing, Doctor, advised one of the nurses.

The doctor’s hands were now fully inside my uterus, trying to get the head to come down the birth canal.

Lisa, I know you are tired. Take a quick breath, and we have to push again. We have to get the baby out, advised the doctor.

At this point I was not just sweating but swimming in my own perspiration, and I began to cry as I pushed and pushed. I was so frightened.

Another report came in from the nurse: The heart rate is coming back up, Doctor.

I don’t know the medical term for how the mind connects the body and how all the signals work, but that time my entire being told me that I had a small distance left to push this baby out. And so about ninety minutes into the delivery, I pushed, cried, screamed, and pushed some more.

Though none of us knew exactly what was medically going on with the fetal heart rate, I knew we were in a situation where my child’s life and possibly my own were at risk—confirmed by the dialogue the medical team was having about my own vital signs.

Great job, Lisa; the head is coming out. Keep pushing. I need you to breathe though. Take big breaths, the doctor said.

Fetal vitals are level, Doctor, advised one of the nurses.

As a mother of three other children, I am aware of the very frightening moment after the baby exits the birth canal and when it takes its first breath and cry. It’s a moment where you expect to see a big smile come from the doctor’s and nurses’ faces.

Okay, the head is coming. Keep going, Lisa, I heard the doctor tell me. Okay, I have the head and am turning his shoulder, she continued.

We all heard a loud sound on the fetal heart rate monitor, and Neil told me a nurse ran quickly out of the room. The doctor said loudly to me, Lisa, stop pushing. I’m reinserting his head into you for a moment. He’s not breathing.

Then I heard the doctor say, "Nurse, code blue. Call PEDS now!"

I later learned that code blue is the hospital term for cardiac arrest or respiratory emergencies. I am very thankful I did not know that term at the moment.

I screamed, What is happening? He’s not breathing? I was frantic, and the nurses were trying to calm me down.

Neil would later tell me that eight people charged into the room with an infant crash cart and equipment needed to resuscitate a newborn.

Heart rate is very low, Doctor, said the nurse.

Okay, ready? said the doctor.

Bringing the baby out, said the doctor, talking to the people manning the crash cart.

Heart rate is crashing, Doctor, said the nurse.

Administer oxygen now and cut the umbilical cord! the doctor shouted. Take off the oxygen mask, turn him on his side, and sweep his throat, the doctor further said.

At this point, though exhausted, I could hear everything and was screaming for my husband, but they kept him away from me. He and I made eye contact as he watched the medical team work on our baby. I could tell he was working hard to keep it together.

The medical team worked for what must have been thirty minutes, and people were coming back and forth into the room, including cardiology and pulmonary doctors. They stopped talking to me, and one nurse was trying to soothe me by sitting next to me and holding my hand. Due to the situation, all the normal cleaning of the baby and me that went on right after childbirth wasn’t going to happen apart from what they could quickly do. I just blocked it all out and closed my eyes and prayed as I heard Neil speaking encouragement to me. I was so frightened, but I also felt strength and a desire to reach across that room and make it okay for my newborn, even for a moment.

Then the entire medical team, as if in a rhythm, stopped the frenzied work across the room. Some sat back in their chairs. The doctor looked at Neil. I could see the back of her head as she wiped her hair out of her face, but I did not see the expression she gave him. I braced for the worst. I did, however, see Neil look at me, holding back tears, and he gave me a thumbs-up sign. I sobbed loudly. I think I sobbed enough for both Neil and me. I was shaking uncontrollably for a while, so much so that the nurse started yelling to bring in several blankets, saying, The patient is in shock.

The doctor came over and held my hand and leaned over me. I looked up from beneath the blanket and asked if the baby was okay. The doctor looked at me with a reassuring but sad smile.

She said, We were able to stabilize his heart rate, and he is breathing with assistance from an oxygen mask, but there is something wrong, and he has one condition, perhaps multiple conditions, we need to get assessed right now in the NICU as he is at high risk of sudden infant death. Unfortunately, we are not going to have a lot of information for you and your husband for several days, and your son is going to be busy with several doctors seeing him. His heart rate is not stable, nor is his breathing. But he is alive. I’ll tell you what … Can you sit up a little? If you can sit up, I’ll let you hold him. He is connected to breathing equipment, so we will hold him in place on your breast, okay? The doctor paused to hear from me.

Okay, I said.

All I was holding on to were the words from the doctor: He is alive. Though completely spent, a boost of adrenaline hit my system, and I remember smiling so big as the doctors were working to bring Josh over to me. It was a moment of intense joy and pain as I looked at his little face. I also noticed just how fragile he was, like a rag doll.

I’ll never forget that even though his whole body looked lifeless, I grinned from ear to ear because he had this amazingly full head of hair that none of my other children had at birth. I ran my fingers through his hair as he lay peacefully on my chest. I was sad and glad and ecstatic and scared and proud.

I thought, That’s right, Doctor. He is alive!

And just as that brief magical moment happened, the doctor said, I am so sorry, but we need to take him now. It is imperative we get him to the NICU right away. You did great, Lisa. Congratulations on the birth of your son.

And with that comment, the doctor, the whole team of medical staff, and my son were gone. He was gone from my arms, and I was shaking under the heavy blankets. I learned later from Neil that it was 3:30 a.m. when I faded off to sleep. I had sunk asleep into the bed before he could come hug me. Thankfully, the medical staff monitored and attended to me while I was asleep, keeping a close watch on my vitals. I don’t remember falling asleep.

* * *

When I came to several hours later after the sun came up, I was keenly aware that Josh was not with me, and I was in need of details.

I was lying there feeling horrified, messy, and underdressed. I made myself sit up. Once I confirmed the details of what I remembered had happened during the birth with my attending nurse, I asked her to help me get to the restroom so I could somewhat straighten myself up. That five-foot journey was as agonizing as running a marathon. I was dizzy and sore, and it was frightening how dark my urine was, even with fluids from an IV being administered to me. My nurse stayed with me the whole morning and made sure I had some of my care essentials and extra fluids to drink.

I don’t know what it was about having my essentials bag brought to me, but it was of great comfort. I still had makeup on. The makeup had run, and I was so happy to wash my face. Normally, I would not have had makeup on heading to the hospital, but with Neil’s birthday celebration going on, I wanted to look nice. I thought I was going to have a few minutes to take it all off, but instead here I was!

When I got back to bed after taking care of myself, I felt a little better, and they let me stay seated. I got up to have breakfast, and the nurse and I talked a lot to my nurse.

She was so nice, and she could tell I missed my son and was feeling very bad physically and emotionally. The hospital was kind enough to find a room for Neil to sleep in. He had to get up and coordinate with the nanny and talk to the kids to explain what was going on before he could come see me, and he let me know the kids and nanny were doing fine.

So there I was, staring out my window—and I mean staring. I was just trying to process what had happened. I wanted to feel joy, but I just felt every other emotion, and none of it positive or selfless. I had unmistakably woken up in the worst place mentally, which I never like to be in: having a pity party for one. I was enjoying it and hating myself for feeling that way.

I was in that state for quite a while, then the positive side of me, which I like most, stepped in. I had an epiphany:

Heroes do what’s necessary, regardless of the consequences.

Even though, as Joshua’s mother, I could not remove myself from the situation he and I and the rest of the family found ourselves in, I realized it was up to me to decide which way I wanted this story to play out. I was called in that moment to lead and be the hero for Josh and the family. Everyone has the ability to become a hero. I’m talking about everyday heroes. The people who get up and do what must be done for the sake of something greater than themselves. People who do the right thing, not because someone else is watching or because they’ll get some sort of recognition for it. Everyday heroes see what must be done and they do it, even when it’s not the easy thing. Even when it means they have to make personal sacrifices that could cost them their lives.

It would have been amazing if when I woke up from sleep that night, I was looking fabulous and the doctor walked in and said, I hope you are well rested. Your son is healthy and ready for you to take home.

I knew, however, that was not going to happen, and I was doing my best to cope with that reality.

Did I wish that someone had been there directing me on what I was supposed to do next? Sure, I admit it. I didn’t ask for any of