NARRATED BY A MOTHER AND A PATIENT
Hosted by Erica Jolene and Kristyn Newbern | Transcription HERE
Has your heart ever been heavy with worry for your friend whose child is facing a life-changing procedure?
Have you ever had to experience the agonizing mix of fear and pain as you hand over your child to a team of surgeons?
Have you wondered what surgery day is like for your child?
From Kristyn: Friends, this episode is unlike any other. If you have ever wondered what it’s like when I have disappeared from the world for any of Luke’s surgeries, or if you are or know someone with a child facing life threatening surgery themselves.
Today’s episode is a story-form account of high-risk pediatric surgery prep, waiting, and recovery from the perspective of a mom and child. I’d recommend giving yourself time to hear the full episode all at once for this one.
We considered not releasing this episode in light of everything terrible happening in the world. But honestly, there are kids and parents facing this very real reality right now. Every time we are inpatient one of the sinking feelings in my stomach is knowing how dependent we are on a constant and stable access to healthcare. How disruption in that from political unrest or any number of events would be catastrophic for us. Please keep the medically complex families in and around Ukraine top of mind, and the devastating impact this chaos will undoubtedly have on them.
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Episode Transcription
Erica
Welcome to Atypical Truth. I'm your host, Erica Jolene. Unlike the conversations that usually take place on this show, today, you are going to hear two versions of the same story. A story about surgery day. Through the perspectives of both a mother and a child, Kristyn and I narrate our time spent preparing for undergoing and recovering from high-risk operations.
Kristyn
I wanted to talk about the experience of being a parent during a pediatric hospital stay, mostly because it is absolutely nothing like what I assumed it would be. In my case, I was lucky enough to know before Luke was born that he'd be transported almost immediately to Cardinal Glennon Children's Hospital and have at least one heart surgery as a newborn. Kevin and I were able to tour the hospital, walk into one of the neonatal intensive care units (or NICU rooms), and the pediatric intensive care unit (or PICU rooms). And we even met our unborn son's heart surgeon to discuss the potential surgeries that he might need. We had 11 weeks to prepare for what was about to happen, and it still hit us like a freight train on fire. So for that reason, I wanted to offer perspective for medically complex parents, or anyone trying to relate or sympathize with or understand parents in this situation. Now, with my perspective, comes a bucket of disclaimers. I am one mom of one medically complex child, in one city, and have only been that mom for the last five years. And while my son has had intensive inpatient hospital stays, those stays have been for acute medical reasons like surgeries and recoveries. Luke was also born full-term at eight pounds, eight ounces. So knowing this, I acknowledge that I do not know the experience of parents with babies born prematurely. Nor have I lived with the long-term inpatient perspective. I've also experienced this trauma with a sound safety net of support. Luke was born to parents and an extended family with emotional, mental, and financial stability. And while it doesn't detract from the journey he has endured, it is important to know the privileges like our race, ethnicity, gender identity, socio-economic status, that have never been concerns or even considerations in our access to health care. There are volumes of other perspectives of hospital stays from other medically complex parents. And those stories are valid and deserving of being heard as well. I'm sharing my perspective, stories, and memories because they might just connect to someone in their own experience now.
Erica
I too have a bucket of disclaimers when it comes to sharing about surgery day from a kid's perspective. The first is that it has been nearly 20 years since my last major surgery. In the span of twenty years, the intensity of the emotions I felt when faced with these big days, they have softened with time. It is also important to note that the bulk of my most invasive and critical surgical procedures, they happened throughout the first eight years of my life. So my memories of these more intense procedures are less vivid than my memories of the procedures I had later in life. Throughout my early childhood, I had less awareness of the significance of the procedures. Like most young kids, I did not understand the severity of the risks, the fact that every procedure was an attempt to help me live longer and more independently, but that each procedure also posed a serious risk of the opposite. Potential death, potential long-term dependence on machines, and the loss of a voice that I didn't acquire until the age of three. As I grew up, and matured, I came to understand these concepts and the risks that each surgery posed, which made for more feelings of intense fear and anxiety with each procedure. And my final disclaimer, I am but one person with my own experience. So I acknowledge that my experiences are my own, and what I'm about to share, it may not perfectly mirror the surgery experiences of other children. I hope that by offering my perspective, it provides parents more context, about the importance of your roles in our lives, and our memories. How even a child's memories of medically traumatic events, they can be overshadowed by the immense love and support that we feel from our families.
Kristyn
To give some context, Luke has had heart surgeries at nine days old, seven months old, two years old. And just after turning three, each inpatient stay has had unique circumstances due to the nature of the surgeries Luke's age and therefore his level of awareness and also my mental and emotional state as his caregiver. But there are consistencies across all of his heart surgeries and hospital stays. And one of them is that there is a special kind of bravery and terror that comes with willingly driving your child to the hospital to be checked in for open-heart surgery. Dressing your child in their favorite outfit, those early morning hours, and heading out first thing. Entering the hospital and then the pre-op area, which is a small but very full buzzing room. With medical staff coming in and out checking vitals getting consent, explaining paperwork, asking questions. And at some point, you're watching yourself changing your child out of the clothes that you had just dressed them in, a couple of hours before into their tiny hospital gown on a giant hospital bed. distantly hearing your own voice find words of reassurance and strength for your child, giving final hugs, and then handing them over watching your entire world wheel away out the door. And suddenly, that pre-op room is so very large and empty. And you're all alone, holding a onesie and socks. For me, it's been this moment consistently where I first break down. In that hollow prep room, buzzing and congested moments ago and suddenly ruthlessly empty and silent. I realized I have no one to be strong for at that moment. And so I let the bottom ball out. I let the roar of my fears spill into my head. What pediatric open-heart surgery means, the physical brutality of what is about to happen to my newborn, my baby, my two-year-old, and then my three-year-old. I start to slip into the horror of all the things that might not be again. And then, in some desperate act of mercy or self-preservation, my brain scratches the record track from playing out all the way in my head. Deep breaths. I feel Kevin's hand on mine and I know it's time to move to the family waiting room. We pick up our bags, along with our composure, and walk down a hall that seems to get longer with each surgery. Pause for a beat and open the door to where the waiting begins.
Erica
Days leading up to surgery are extra special. However, there is a strange heaviness that hangs in the air, as if everyone is just kind of holding their breath. We do things and we go places that we normally don't. All this just to celebrate that I'm about to have surgery. Most notably, we stay the night at grandpa and grandma's house because as mom explains, they live much closer to the hospital and this shortens the time spent driving through the cold dark early mornings of surgery day. Grandpa and grandma's house it's like a historic museum, filled with grandpa's artwork and artifacts from their travels. There's always something new and fascinating to examine and this helps take my mind far away from the thoughts of the events to come. On surgery day, I'm woken up earlier than usual and swiftly placed in the back of a cold dark car. In a special pair of warm PJs that range and themes from The Little Mermaid to New Kids on the Block, I walk into the hospital, squeezing my mom's hand as tight as I can. We walk through colorful thresholds, through playful hallways with pictures of other kids with disabilities. These pictures always make me smile. And then finally, we travel up the floor in the pretty elevator. These become the landmarks of the hospital. As these scenes begin to add up, I feel a lump in my throat begin to swell. All these landmarks we pass, they mark the fact that we're quickly approaching the big moment when I have to let go of my mom's hand. I think about that moment the most, anticipating our dreaded separation more than anything else. I can't help but imagine how sad she must get and how scared she must feel. I worry for her as she worries for me. We walk into a room full of other families, each with kids who are holding tight onto their parents. Us kids, we barely make eye contact with each other because we can't bear to break our gaze away from our family. If you're a seasoned as I am when it comes to surgery, you know that the set of large brown double doors, those are the only barrier that separates us from the halls of surgery. I squeeze my mom tight with my whole body. I bury my face into her neck. I take in deep sniffs of her scent: fresh laundry, coffee breath to resume hairspray, baby powder deodorant - all smiles in my mother in the morning. I do my best to bury myself away from the bright light that bleeds through the cracks of those double doors. And each time a shadow approaches, I feel a flood of anxiety. "Is that shadow coming for me?" Eventually, it does. Those double doors swing open, snd the surgeon my beloved surgeon Dr. Sharp (a fitting name for a skilled surgeon), he bursts into the waiting room, singing my name and wearing a smile that shines brighter than the fluorescent lights. He is kind and he is inviting. A dad of many kids who really wears his heart on his sleeve. But nothing he does in this moment makes it any easier. I bury deep into my mom getting in my final squeezes and sniffs. With one final glance behind me. The doors close and my mother is out of sight. Then and only then, I finally allow the tears to flow.
Erica
Now holding the warm hand of my surgeon, he does his best to distract me, to calm me. But there's nothing that is calming about this new and sterile change of scenery. It felt strange to walk through those busy back halls of the hospital. Everyone dressed in scrubs or white coats. The halls we walked through before, on the patient side of the hospital, they were colorful, playful, specifically designed to pique the curiosity of kids. Bringing a sense of magical comfort and joy into our lives. But the back halls, that lead you to the surgery room, they are distinctly just the opposite. And this stark difference made the patient halls in the hospital feel so very misleading. These halls are busy with nurses and doctors who are moving just a stride slower than a run. Every person who greets me does so with a smile meant to reassure me. However, those smiles often have the opposite effect, causing me to glance behind my shoulder for one last glimpse of my mother. But by that time, the double doors were completely out of sight. The surgeon is quick to recognize my nervousness, so he comes in for the save for some kid-friendly conversation. "Do you still love the Little Mermaid?" I start to nod my head to appease his attempts at distracting me. We finally reached the bright white sterile surgery room, and the energy changes quickly. Everything about this room is scary, cold, intimidating, the equipment, the masks, the gloves, the covers that everyone wears over their shoes, and the lonely bed in the middle of the room, waiting just for me. I'm greeted by a team of nurses who take over my hand-holding. "Do you want to listen to the Little Mermaid?" they ask. And then they cue my favorite song as I'm positioned to lay down on the bed. Soon, these sweet nurses, they're surrounding me, keeping me distracted, covering me with warm blankets, and finally asking me what my favorite flavor is to help make the anesthesia gas more tolerable.
Erica
The most awful and truly traumatizing part of surgery day, in my opinion, is the anesthesia mask. No matter the advancements in technology, nothing can disguise the awful smell and taste of anesthetic gas. Even the slightest smell of rubber cement, sends me back to those moments of laying on the surgery table, surrounded by eyes that are framed in surgery caps and masks from which many nice voices are doing their best to calm for the absolute worst part of all. And then from the corner of my eye, I see that mask approaching my face. I feel them holding me down, pressure from their hands. I start wiggling profusely and I feel them press the mask against my face harder. Everyone's telling me to calm down, "it's gonna be okay, it's gonna be okay." But everything inside me is alarming. They told me to count to 10. They assure me that I will be asleep before he even gets the number five. Once that smell of anesthesia hits my nose, all the reassurances in the world cannot prepare or calm me. I rarely make a pass the number five, before my eyes get heavy, and I enter deep sleep.
Kristyn
The family waiting room experience is likely very different for every parent or caregiver during surgery. I am so fortunate to have a support system with a compassionate family. Not only close but physically able and also mentally willing to endure this trauma together. Luke's four grandparents, along with his aunt and uncle have sat with Kevin and me in that small waiting room through each of Luke's surgeries. That's eight people stopping their entire lives at the drop of a hat to be present through what is a brutally long, tense, uncertain, horrendous day. On surgery days, they don't even get to see Luke at all. But they still come, every time, because they love Luke with everything they have, and they support us as his parents. Now, I know this is not the experience of every parent. And I also know that not everyone's support system can be physically present, even if they want to be. I know that we are lucky in so many ways. Regardless of the number, the people in that surgery waiting room have a long and terribly anxious day ahead. To offer a timing perspective, the shortest amount of time that we have spent from when Luke is wheeled out from the pre-op room, to when we firstly eyes on him in his recovery room, it has been a little less than nine hours. That's the shortest. At our hospital, a member of the cardiothoracic surgery team calls with an update every one to two hours throughout the surgery. And these calls are generally about a minute long, maybe less, but basically an update of what's happened in the last hour and what is going to happen before they call next. So as you might imagine, I rely heavily on these calls. And filling the time in between can be difficult.
Kristyn
Everyone does it differently. For me, I segment my brain into these pieces, where I only allow myself to consider the step that the surgery team is currently on. More so in a focused effort not to spiral than anything else. I'm usually rather quiet and only allow facts coming from the team to be discussed. No speculation allowed in either direction for me. But you know that any buzz from a device, any click of that door handle and I'm instantly on my feet. We all in that waiting room have this nervous energy at the beginning, and then the room gets quieter. And is painfully quiet during these scary steps. Then we briefly cautiously celebrate each step towards the end of surgery. Honestly, through all of these surgeries, I don't remember any words we've ever spoken to each other in that room, but just the feeling of being so supported, and yet also mutually helpless and terrified. After each surgery, Luke's heart surgeon comes back to the waiting room to talk to us as an entire family. I try, quickly, to wipe my entire head clear of anything that has ever been inside of it so that I can capture every word spoken by this man who just operated on my child's heart before making it beat again. My mind wanders briefly to what it must be like to operate on a child's heart and then speak to the family whose world belongs to it. But I quickly veer back into total absorption mode. And he speaks directly. Truthfully. He never sugarcoats. He never speculates. We learned the initial results of surgery, the complications encountered, and the risks that lay ahead. And once the PICU receives him, and can get him transferred to a room as comfortably as possible. Kevin and I all but run to see him.
Kristyn
In some cases, it's been 8, 10, even 14 hours since we've seen our son. We get the call that we can see Luke, and now three doors are all that stands between us and him. The first door is thrown open like it weighs nothing as we rush out of that waiting room. Just around the corner, though, is the second and worst door of all, the door to the PICU unit. This door is locked and in order to access the unit, we have to pick up an old school phone on the wall and wait for a voice on the other end to give us clearance. And then watch as a tiny red light next to the handle turns green. Sometimes right away. Sometimes it's 10 miserable seconds. And suddenly, a startling click clears our path. We push through this door, the carpet turns to tile. And with it the familiar sterile shock of reality starts to hit. We find his room and stand at the threshold about to feel the full weight of what has happened that day. I remember trying to prepare myself for Luke to first have heart surgery. I was terrified, yes, but still in that mindset of having a problem to solve. There was a heart defect, the problem. And repair surgery, the solution. I knew it was serious. I read about the step-by-step procedure that the surgeon would follow complications that might arise from inconsequential all the way to catastrophic. In my non-medically trained research, though, most of what I read about pediatric heart surgeries, said to expect 5-10 days in the hospital for recovery. And of course stipulated that it depended on surgery success and barring complications, but 5 to 10 days did not seem that long to recover. So I really didn't think much about it. In my mind getting through the surgery itself, getting on bypass, and successfully back off. That would be the hardest part. If we could just get through the surgery, recovery would be fine. But getting through open-heart surgery is really just the first step with congenital heart disease. And let me clarify something about having a child who needs multiple open-heart surgeries. It never gets easier. It never gets routine. It never gets more manageable. Seeing Luke who was playing and talking that very same morning, now swollen, pale, buried in tubes, wires monitors, sometimes with entire limbs wrapped up or central in arterial lines. IV poles surrounding his bed with dozens of drip and bolus medications connected. Monitors, pacing wires, chest tubes, the ventilator, the breathing tube, it's all so much. My baby boy is under there - sedated, unconscious, but there.
Erica
Moments before my eyes actually open, my senses slowly awaken. There's no recollection of dreams. Nor is there really any awareness of time. I feel warm and my body feels heavy. I hear distant beeps and someone talking sweetly to me. I follow their voice through the fog and confusion. Just before I open my eyes, a familiar smell greets me. The smell of anesthesia. It's still on my mouth and in my nose. I begrudgingly opened my eyes and a stranger sits beside me. Looking around, I try to find something that feels familiar. A good post-op nurse will have placed my favorite teddy bear in my arms, my sweet teddy Stormy. The teddy bear that I bring to every surgery. The teddy that symbolizes the love and safety of my mom. "She'll be here soon," the nurse explains. So I squeezed Stormy tight as if I was squeezing my mom. Asleep with nothing to dream. Awake with fog and confusion. I crack my eyelids wide enough to take a quick glance around. No mom in sight, yet. I squeeze Stormy. Fall back to sleep. And repeat the process all over again. Without any clue how much time has passed. I'm up very groggy, weak, and nauseous. This time and for the duration of the experience, my mom is right there, as though she never really left my side at all. But everything feels different. Of course, I have no recollection of why. My body is now decorated with new bandages, stitches, tubes, and wires. But my mind can not recall what my body just went through. I hurt. My throat hurts. My belly hurts. My skin hurts. My head hurts. I go back to sleep. The only time it doesn't hurt is when I'm asleep.
Kristyn
As soon as we walk in, we are greeted by Luke's PICU nurse and I remember back to being pregnant on that original PICU tour. They told us that every heart kiddo gets a one-on-one PICU nurse for at least 24 hours after the surgery. And I remember feeling such relief, "a nurse around the clock dedicated to my baby after his surgery to make sure that he is comfortable as he recovers." And that's somewhat true. Or maybe a soft, cushy version of the truth. But I realized at that point standing in the PICU that the reason the nurse is 100% dedicated to an individual pediatric heart surgery patient is because that is how critical his health is. How fragile of a state he's in and how mercilessly fast it can change. The first night after surgery, night zero is anything but restful. Monitors and alarms sound through the night. Different beeps and sounds for heart rate, respiratory rate, blood oxygen levels, blood pressure medication, and ventilator alerts. And that is when everything is stable. Throughout the night, the entire goal is balance, establishing a balance of sedation medication that will allow the body to rest but not introduce new problems and variables to this already complicated equation. Probably a mix of adrenaline and nerves and anxiety but, I have never slept through any Night Zero.
Kristyn
I will say something that has really helped me during surgery recoveries as a CHD parent, has been to establish some form of structure and schedule in the midst of the uncertainty. And for me, that schedule's consistency is in rounds. And there are numerous medical rounds throughout the day, but in our world, it starts with the cardiothoracic surgery team rounding every morning, usually by 6 am. So no matter the experience of the night before, I always make sure I am upright and ready at the room door. And it is quite the scene, anywhere from 5 to 15 doctors, surgeons, residents, specialists, all reviewing and discussing each patient's last 12 hours, and the plan for their next. I bring a notebook with my observations and questions, and really more important to write down the changes that are taking place. This time is where I learn what the goals are for that day and what the risks may be. This two-minute interaction sets the course for the entire day. This round is followed by several more, ICU team cardiology team, and then consults with specialists if required. Throughout all of these interactions, in addition, are consistent vital checks, IV medication changes, blood work labs, chest X-rays, echocardiograms, EKG, the list goes on and on. All of these specialty tests and procedures throughout the day, are tracking progress, identifying problems, helping the medical team to establish whether or not those goals can be met. Or if we're falling off track. And somewhere in between all of this, we are trying constantly to move forward. Usually, a day will have a major goal associated with progress and assuming stability. Maybe it's lowering sedation to encourage breathing over the ventilator or maybe extubation entirely. It could be adjusting a medication dosage to combat a complication or taking out a central or arterial line. Later days, it becomes trying to eat and drink, removing chest tubes sitting up or even taking steps. Each of these are huge milestones in surgery recovery. And it's almost unheard of, to progress through these milestones without complications. In my experience, best case recovery has felt like a consistent dance of two steps forward and one step back. Throughout each 12-hour shift in the hospital room, I will see dozens of medical professionals ride a roller coaster of events and changes, catching 20-minute naps where I can but really, most of the time I am running on adrenaline to try to do my very best. Communicating, advocating the best that I can for Luke. And by the time the cardiothoracic surgery team's evening rounds return, usually around 5:30 pm, I'm standing right there at the door, holding my notebook, ready to review the last 12 hours and plan for the next.
Kristyn
And, yes, it is exhausting. But it's also worth the reminder that you don't know the end of this chapter as the pages are being written. The busy schedule, the ups, and downs. They are grueling and relentless, but they're actually gifts of forward-motion. In hearing the experiences of loss from other CHD parents, I stand at every new set of rounds with a heavy, sobering gratitude that we have made it to this next 12-hour mark at all.
Kristyn
The chaos is overwhelming. And yet there are short periods of time where there is no doctor, no nurse, no resident in the room. When Luke resting and I've grown so accustomed to the monitor beeps that it fades into the background and I am suddenly so alone. These silences these isolations they can sometimes be the hardest part. These are the times when the "what if's" creep in. Because even the chaos that I explained earlier, doesn't include the unexplained sudden blood pressure crash, or a failed extubation. There are frustrating, painful, and sometimes catastrophic complications to recovering from pediatric open-heart surgery. And in these brief silences, the fear of that sudden irreparable decline, and the knowledge of my helplessness to protect my child if fate takes that turn crescendos from a dull roar to a deafening crash. The feeling of isolation in these times is even more difficult than the overstimulation of that busy schedule from before. So, in review: lots of noises, lots of people, communication, information, steps forward steps back, anxiety, adrenaline stress. As I'm sure many other parents in similar situations have too, I have heard many comments over the years of, "I don't know how you do it!", or, "you're supermom!" And I truly do appreciate that support. But I want to clarify that this is not a choice. This isn't a measure of my endurance or commitment. Hell, it's not even about me. Everything that I'm experiencing is completely ancillary, to the trauma that Luke has been through and the mountain that he has yet to climb. I am there. And I am there as a consistent, calming, reassuring presence for my son so that he knows through this, he is unconditionally loved and supported. I can't do everything. And I certainly don't do everything right. But I know that I will rise to the occasion every day for my children on this journey.
Erica
As the fog of anesthesia starts to subside, as my body starts to heal, I begin to regain strength and awareness. The process of recovery has begun. Sometimes this process of recovery is long, I stay in the hospital for days or weeks. Some recoveries take months. Sometimes there are complications. And I only know this by the look of concern that consumes my mom's face. I soon since the panic, as more and more people come rushing in and out of my room. Sometimes I wake up in a new room with more monitors and beeping machines. I feel worse than the moments I could last recall. But there's my mom. She's there through it all. She's there when I wake up. She's there when I fall asleep. Other times, the recovery is quick. And I get to spend the bulk of it at home in my own bed, surrounded by my favorite things, entertained by my favorite TV shows. Mom gets to stay home as well, and this is perhaps the best part of it all. I'm trying to rest and recover, but I feel anxious to go off and play. Or perhaps to go back to school and see my friends to tell them all about the medical adventure that had just transpired. And if I'm lucky, I'll have some new scar or mark to show for it. That's always good for the story.
Erica
No matter the time it takes to recover. There's one constant comfort through it all. And that's the love that surrounds me. More than anything. It is the familiar faces of my family that helped me through the pain and discomfort of recovery. I felt extra special on the nights when my mom would sleep in the hospital bed with me. I love seeing the hospital room decorated with flowers and balloons for my aunts and uncles. And there would almost always be a new teddy sitting on the table next to me. If my comforter from home was spread out across the hospital bed with a stack of coloring books awaiting me, this was the sign that we were here for the long haul. But I never seem to faze me so long as my mom was right there by my side. And then of course were the nice nurses and friendly doctors, who came in and out of the room frequently. Every day at the hospital is busy. Every day there's a new challenge awaiting me. Every day there was a team of people cheering me on, making me feel like a celebrity. All these things added up to be really successful distractions from the actual stress of hospital life.
Erica
The memories, they feel vivid. The tastes remain repulsive, and a single whiff of a surgical smell can just take me right back there in an instant! The images are sharply in focus, but the feelings associated with these memories, they've changed. I know that surgery day was fraught with a heaviness that hung in the air, distributing pressure and stress to all those involved, including myself. I recall experiencing fear, anxiety, and pain. But those feelings, they're not nearly as tangible as the feelings of love that surrounded me. From the special days that led up to surgery, the climatic goodbye in the waiting room, to the care and the attention that I received during the recovery. What I remember most is my mom - the snuggles, the love, the comforting words, she would sing me. Of all the scary and truly traumatizing moments, it's these loving memories with my mom that overshadow it all.
Kristyn
If you have someone in your life, who is the parent or caregiver of a child who's undergoing open-heart surgery, or a different invasive life-threatening procedure with a complicated, impatient recovery process, I hope this account brings to light some of what they might be experiencing. And maybe it explains what you are experiencing from them, in either direction. Why they might decline your offer to bring dinner, or why they might ask for five cheeseburgers and all of the ice cream. Why they might not text you back for days, or why they might need to call you several times an hour. Everyone's experience is different, but they are all experiencing chaos, drowning overstimulation, running on adrenaline, next to deafening isolation, run-on anxiety. They're watching the person they love more than anything in this world experience a trauma that they cannot protect them from. So forgive the over-response. Forgive the lack of response. Know that you are important to them. But they are moving full-throttle on an empty tank. So just being there when you're needed, means more than you will ever know.
Kristyn
And if you are the parent, if you've just sat down on that same PICU couch for the first time and hours, or you're just remembering back to it from this story, if my experience connects to yours at all, know that you are not alone in this. You are brave and you are strong. You are not perfect. You are not all-powerful. But you are there. No medicine gives your child confidence or support. No treatment plan watches and listens and advocates for them. No monitor sings them to sleep or reads some of their favorite book. No test leans over the hospital bed all night just to hold their hand when they're scared. You are exactly what your child needs because you are all of those things and more. You love them fiercely while they fight for their lives. Do not underestimate the value that you hold.
Erica
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