April 5th marked four months since Catherine died. It was 121 days exactly. She spent exactly 121 days in the NICU after she was born. Anyone else find that interesting?
Years ago, when my parents got divorced, my Mom had me make something for her. She never told me why or gave me any backstory, and I never asked. She had an old piece of slate broken into approximately the shape of North Carolina and she asked me to ink a quote on the gritty gray texture – “Deep in the mud and scum of things, there something always sings.” She told me it was from Thoreau and that has always made sense to me since he spent so much time outdoors around a wet, sloppy pond.
I never fully understood the reason she wanted it so badly. She was insistent and nagged me about it until I got it done. I believe it became one of her most prized possessions. And the quote certainly made sense given what I’m sure was a very painful time for her. My mom was full of optimism and hope and had a contagious smile and laugh. I have always admired her ability to find something singing in the middle of the scum. She is probably the reason I’m so optimistic and hopeful. I wish I could take credit for it all on my own – or with some of God’s help, certainly. The reality is that I believe she taught me everything I know in that regard, and she made me everything I am.
The slate is one of a box-full of things I pulled from her house after she died. It’s faded to barely perceptible words on what someone would easily mistake for trash. It sits propped on a brass art stand on a table in a heavily trafficked area just beside my home office. I have seen it and thought about what it says for 82 days in a row. At times I’ve been angry at it. “Yeah, nothing’s singing here,” I’ve thought. I’ve been looking – or rather listening – for something to start singing since the day in December that feels like a swirling vapor not even three months ago.
One of the more difficult days I’ve had since Catherine died was the day we donated most of her large equipment. We gave two wheelchairs and a jog stroller and a bike and a stander and various pieces and parts of the world that is disability to Cedar Lane School. They were incredibly grateful though I questioned who would really be able to use her wheelchairs since they were customized to Catherine’s specific body and needs.
A couple weeks ago, Brian had to go to Cedar Lane. I wondered what the day would be like for him and if it would bring death pangs, the opposite of birth pains, to his chest. When we got home that evening, I asked him about it, and he said that it wasn’t hard. He projects a calm fortitude, even in the midst of deep grief, and he sounded nearly incredulous that I would think it might be hard.
“Really?” I asked, an air of suspicion in my question.
“They told me about the girl who got Catherine’s wheelchair,” he said.
I paused and looked up at him. I was nervous about where this was headed. “Oh yeah?”
“They told me she wasn’t very communicative and then they put her in Catherine’s chair and she started talking and communicating a lot better because her body was supported better.”
Deep in the mud and scum of things…. There something ALWAYS sings.
With apologies to Ralph Waldo Emerson, who actually said the quote a little differently: “Even in the mud and scum of things, something always, always sings.” I sort of like Mom’s version better.
Sarah had to write a personal narrative at school. She’s in 5th grade and came home to tell me she had written about what happened the day Catherine died. The below is published with her permission and all my love.
“Give CPR!” I heard my mom yell at 5:25 in the morning. The first thought I had was OMG this is the day, my sister is going to die. All I could hear was my mom screaming in agony. I then decided to see what was happening. When I walked out of the room, I saw my dad yank open the door really hard which scared me half to death because it was so loud. Not like I was already scared half to death! As soon as I got downstairs, I heard talking and saw like “2,000,000” people downstairs, more like 20. Straight away my mom told my dad to comfort me and hold me. We then went downstairs again to get ready to go to the hospital. I threw on some random pants with a random shirt. I then grabbed my blue ipad because my dad warned me it might be a while. My mom got into the beeping ambulance with my sister and before I knew it, they were gone.
My dad locked the icy cold door and went to the car through the garage. As I got into the car, I noticed that our navigation system was cracked and broken. I started to freak out! I was about to tell my dad but then I remembered that someone had vandalized our car a couple days ago. Meanwhile, I was sitting in the back seat with my black and silver headphones on, I was completely shaking. I was feeling nervous and anxious to know what was going on and what had happened. I felt like I couldn’t breathe and my throat felt like it was tightening. I was so scared and wanted to be with my mom, dad, and mainly my sister.
As we pulled up to the bright red emergency door, I was rushing in to find my sister. The first thing we had to do was go to the reception desk and get our check – in bracelets. When my dad told them why we were here and where we were going, I noticed something quite strange.
“My dad sure is talking camly for the situation,” I thought. After a couple minutes of walking up and down hallways, we finally found her. It was pretty obvious where she was because there were about 30 people standing around one room and one person. Beneath the crowd of people I finally found my mom. However, as soon as I came up to her, she told me to go to the empty room right beside where she was standing.
In my head I thought, “ Why can’t I be with her? Why can’t I see my sister? My best friend!” All I wanted to do was give up.
“I need to go to the bathroom,” I told my dad. But really all I wanted to do was go and see my sister. I was lucky because I could do both. I walked across the tile hallway all the way till I got to the bathroom. Before I went in, I got a sneak peak of Catherine, my sister. I saw a bunch of people standing in the room and outside of the room. I could hear pounding and talking, but I didn’t know why.
When I go back to the room, I asked my dad what the pounding was.
“I don’t know what that is actually,” he said. So, I just assumed that it was the CPR machine pressing down on Catherine’s chest. I waited, and waited, and waited for something to happen. I started to just stare into space. Then, my dad started talking. I don’t know if it was to me or someone else but………. all I was thinking about was wanting to go to sleep. I mean, it was only 6:25 in the morning and I had school today. The next thing I knew my mom walked into the room and kept talking and hugging my dad. I was eager to know what was happening so I asked her and she said that the doctors were working on Catherine and that there was hope. I then heard someone walking by the small room we were in. I had no idea who it was because all the blinds on the windows were closed and there was no way to open them from my point of view. Then, a women with blond hair and blue eyes came into our room. She was wearing a blue nurses outfit and pitch black shoes.
“Mommy, who is that?” I asked.
“It’s my friend. She’s a doctor,” she replied.
“I’m so sorry,” her friend, the doctor, said. I instantly knew what happened. She’s gone.
In the ambulance, I kept kicking myself. Why didn’t I print her medical history last night? I was lazy. Serves me right. I had updated it. All the info was there – just for emergencies like this. But I didn’t feel like printing it, and I honestly didn’t think we’d have an emergency so close to her discharge from the hospital. They had never been so close together in the past. And Catherine had had two good days at school Monday and Tuesday after coming home the prior Wed. So I hadn’t printed my security blanket of facts and figures related to Catherine’s medical history since birth, and that meant I didn’t have any info to give anyone who kept asking about allergies and meds. And for some reason, even though I had repeated all the information hundreds of times in the past, I couldn’t remember any of it.
I had told the EMTs all the nurse had explained to me – that she heard her moan at 5:20. She went to hang her feeding bag at 5:25 and noticed she wasn’t breathing. And that’s when she came to get me. I had no more info. I didn’t have my cheat sheet that impressed so many medical professionals. I barely knew what had happened. I was in the front seat of an ambulance and it was not at all like the dozens of times I’d been there before. I couldn’t think. I didn’t cry. I could barely breathe. I was scared out of my mind. I needed help. My phone became my lifeline.
At 5:57 AM, 29 minutes since I had called 911, I sent a text to my friend who is a doctor in the Pediatric Intensive Care Unit at Johns Hopkins.
Please pray. C not breathing. In ambulance to Hoco now.
I was surprised she was up when she replied nearly instantly:
“Not breathing? Can you give me more information? Are the emts breathing for her?”
“Yes. Incubated [sic]. I think she is dead. I’m not asking questions. I am praying.”
She said she was coming. I immediately told her it wasn’t necessary. I’ll never forget the sentiment she sent back immediately.
She let me know that if I wanted privacy and space, she would stay away. She emphasized her care for Brian and me and texted,
“this is my area of expertise, and if you will let me, I want to come.”
Truthfully, I was shaking and could barely see the phone. I’m not the one who ever asks for help. I hate it. I hate to burden people. I have learned to accept help; I’m still not good at asking for it, though. As soon as I read her text, I took a deep breath and replied instantly:
In my memory, I made a post to my neighborhood friends before I contacted my doctor friend. Looking back at the texts and timestamps, however, I realize my memory has it backward. Or technology is wrong.
Either way, the timestamp says that at 6:01 AM, while still sitting in the ambulance, I posted to a GroupMe page called “Westside Girls” where my neighborhood friends stay in touch. Normally, it’s full of “Let’s meet for wine by the mailboxes!” and “Happy Birthday!” I needed help and knew I could get word out quickly for prayers:
If u have ever prayed for Catherine pray now. On way to HoCo. Serious. Please pray.
A friend immediately offered to help. She wondered who had Sarah.
“Brian and s are coming to h” I typed quickly as the ambulance pulled away. I had told Brian and Sarah to come to the hospital behind the ambulance. Sarah was safe. And then I quickly typed:
Pray. Even if you aren’t sure and don’t know how. Ask god for help.
These staccato pleas were my desperate attempts to change what I feared had already happened.
Normally, I’m chatty with the ambulance driver. I like to know what his background is and if he still likes what he does and the type of calls that stand out in memory. I barely said a word during the 8-minute drive to the hospital. I prayed. And texted. And looked back on Catherine to holler and tell her I was still there and for her to hang on and come back. I can’t believe how long ago it feels just thinking about it now as I’m writing this only 2 weeks, 1 day later.
At the hospital, the doors opened to receive Catherine. Just like teams had done in the past, they looked so serious. Frankly, so scared. I didn’t like that energy. I lifted my hands up like I was literally, physically able to raise their energy. “Come on folks. This is NOT going to be a sad day. You are gonna help her cuz this kid’s not done yet. I want to see smiles and good energy because it matters! It all matters and you have a job to do!” Where did that come from? Who was I to tell them how to do their job? Or whether to do their job, in fact.
We walked in as normally as we’ve ever walked into the Pediatric ER. As we entered the ER, I saw Catherine’s face turn a little pink. “She’s turning pink! That’s a good thing, right?” Looking back on it I don’t think I ever heard anyone answer, but later, I did hear someone reference it and say, “We got color change as she arrived.” I stood outside the door, my mouth still dry, praying “color change” meant something good.
They asked me lots of questions like usual. Only this time, I didn’t have my cheat sheet filled with Catherine’s medical history. I felt lost. I could barely remember her allergies and meds – things I’ve rattled off seemingly thousands of times over her lifetime. I had even called Brian while I was in the ambulance to tell him where the old one was in the trash. “We’ve already left, Ellen. Do you need me to turn around?”
“No, just come on. Thanks anyway,” I replied. Really, what difference would it make? Somehow I knew I was grasping at anything that might help – might prevent what I believed was coming.
I don’t recall that I ever even entered her room – unusual for me – because so many people needed access. And I didn’t really want to see this much trauma. I stood across from her in the hall – in the doorway of the bathroom, actually. Techs arrived at the door of her room, room 8, and were given clear orders from someone. “You three will do CPR when she’s tired. You’ll form a rotation.” She pointed at one of the girls and said, “OK, you’re up next.”
I didn’t even know techs were trained to do CPR. I remember thinking that and then thinking that it made sense. I also recall thinking it was odd that with all the technology we have, CPR is still the go-to option to try to save a life – even in the ER. All I could see beyond the wall of professionals working to help my baby was a footstool on the floor beside the stretcher where the Tech’s head was bouncing up and down with the weight of compressions.
At some point, Terri stood beside me for a moment – the EMT I trusted. The one who had responded to our house and to school for several 911 calls. “It doesn’t look good, does it?” I whispered. Always one to be honest, she affirmed quietly, “No, it doesn’t. We weren’t able to get an electric response in the field.” Somehow, she slipped away after that, and I didn’t see her again. It felt sort of like Catherine went with her in that moment.
Brian arrived sometime during all these random thoughts and snippets of trauma. “Where’s Sarah?” I immediately wanted to know. “She’s in the room,” he replied looking on and scanning the scene.
“What room?” I asked – as if that mattered. I just wanted to know where she was, I guess.
I told him my doctor friend was on the way. The ER team kept asking when she was going to arrive. She had texted that Hopkins had put a team on the road to transport Catherine and that she’d be there in 8 minutes. Those 8 minutes felt like eternity.
I passed that along to the attending at the regional hospital and heard him say, “OK, let’s keep her in a good place.”
I thought that might be a good sign. “Yes, let’s keep her in a good place,” I echoed in my mind and heart.
So many people asked me, “What happened?” in the hours after Catherine died. I repeated the story over and over again – to paramedics… to doctors… to nurses… to clergy… to family… to friends… I finally got tired of it and told them I couldn’t answer that question any more. Numbness took over. Everyone describes it as “numbness.” That’s really a pretty good word because you know you’re there, but you can’t feel anything. I haven’t found a better word.
I wanted people to know what happened. I just couldn’t keep saying it over and over again. And I still don’t want to say it. I have found that I want to write about it though. And so, over the next few days or weeks or however long it takes, I’m going to post the story of what happened in all its excruciating detail and all the vaporization of my already-fading memory. My suspicion is that it’s not an easy answer to read. It’s certainly not an easy answer to write. It’s helpful to me to write about it. Maybe it will be to you as you read it, as well.
Two weeks ago, today, I was up at 5:00 AM preparing for my day like usual. Well, not exactly like usual because it was a Wednesday, and I usually wash my hair on Wednesdays. Two weeks ago, I was dragging. The alarm went off and I had to work hard not to hit the snooze and roll over for a few more minutes. I don’t recall why I wanted to be up at 5 AM. Interesting.
I stared in the mirror debating with myself: “Should I get in the shower? Could my hair make it another day? What do I have on my calendar? I am so tired, I don’t feel like it today. I think I can skip it.” Little did I know, those words bouncing around my head became the “famous last words” of stereotypes. And little did I know that NOT being in the shower made all the difference in the world.
I started putting on makeup, relieved with my decision, and thankful I could go one more day before washing my hair. I started thinking about all the things I would do with my treasured, quiet hours in the still morning.
Through the whispers of my mind, I heard the nurse calling. At least I thought I did. My ears have been trained over more than a decade to listen for nurses who might be having trouble two floors down in our townhouse. By now it was about 5:25 AM. She should be hanging a bag, I thought.
Then I heard her again – this time, I heard the panic. “Uh, oh,” I thought as I stopped what I was doing – did she have another seizure?” I couldn’t hear her words; just the panic. I quietly exited quickly because I didn’t want to wake Sarah. When I got to the hall, I could make out the words, “She’s not breathing! She’s not breathing!”
My mouth was suddenly drier than it’s ever been.
I ran down two flights of stairs and turned the corner to look in Catherine’s room. She was whiter than I’d ever seen her. And she had a yellowish tinge. To the EMS team when I called a little later, I said, “She was white as a ghost.” She wasn’t really that white; it was an eerie pale that I’d never seen before – even after her most intense surgeries. And she was so still.
The nurse was starting CPR. “Did you call 911?” I yelled. “Where is the oxygen? Why isn’t she on oxygen?” I fumbled with the oxygen concentrator and realized it wasn’t plugged in. I got that started, gave it to the nurse to administer, and ran back up the stairs to my phone saying, “I’m going to call 911.”
“911 – Where is the location of your emergency?” they asked after one ring.
I’d done this many, times before. I was always calm. I even made jokes with the Dispatcher. This was different. I stated the address immediately and then said, “My daughter isn’t breathing! You have to send someone fast.”
She went through a series of questions, clearly designed to triage and help a panicked caller on the other end of the line. “I’ll stay on the line with you, ma’am,” she said. It had always been annoying in the past. I knew the drill. In the past, I got irritated because I needed to pack a bag since a call to 911 meant an ambulance ride to our local hospital and then a transfer to Johns Hopkins in Baltimore. Every other time I’d called before, I had things to do and no time to hang out with her on the phone. This time, I was glad she was there.
Simultaneously, I had climbed a flight up from my phone to Brian. “Get up! Catherine’s not breathing!”
“What do you mean, not breathing?” he asked as he pushed himself up in the bed. I ran downstairs before I had time to answer. I think I yelled back up the stairs, “Just get up!”
I came back downstairs and saw the nurse doing CPR. My brain flashed back to high school when I got certified more than thirty years ago. Meanwhile the EMS dispatcher kept asking questions. I can’t even remember them all now: Does she have a pulse? Is she responsive? Keep doing CRP. Are you giving her breaths?
Breaths! Oh yeah – I hadn’t seen that done yet. “We need to give a breath,” I said to the nurse. My mouth was so dry that the words barely came out. It was like they were stuck in there attached to the top of my tongue and the roof of my mouth – a cobweb of words that had no way to escape.
I leaned over to give her a breath, trying to recall how hard to breath. “Should this be child-sized breath or adult-sized breath?” I thought as I leaned over to cover her mouth with mine.
Her chest rose so easily. This wasn’t nearly as hard as the mannequins at school. I hope I didn’t do too much, I thought.
We started counting compressions. 1. 2. 3. 4. 5. Breathe. I seemed to remember you weren’t supposed to breathe like this any more. I didn’t care. BREATHE!
“Bubbles – she has bubbles coming out of her mouth. That’s a good sign, right?” Brian was standing across the bed, and I admitted with the rationality I’ve learned from him after 25 years of marriage, “No, that’s just air escaping from compressions.” He agreed. I can still see their purplish tinge.
“Is the nurse getting tired?” the EMS dispatcher seemed to break through my awareness. I asked her, and we swapped. I started doing CPR compressions on my 14-year-old daughter’s chest. And breathing. And I was surprised at how far her chest compressed when I pushed down on her sternum. “I bet all her ribs are broken,” I thought. “That’s OK,” I heard echo in my head, “That’s the least of….” My thoughts trailed off and we swapped compressions again.
“They need to get here! Where are they? It’s never taken this long. Are you sure they’ve been dispatched and are on their way?” All these questions pushed out of my mouth to the EMS dispatch woman like the air I was pushing out to help my daughter breathe.
“You don’t know me; I’m normally really calm,” I tried to explain to the woman. “This is different. She’s not breathing and they need to get here! This is taking a really long time! Are you sure they’re on the way?” Chest compressions in the background continued and I finally saw the lights.
It’s no exaggeration that approximately 15 EMS professionals showed up at our house over the next few minutes. We had them all: fire, police, medic. They opened the doors wider. They moved furniture. They moved Catherine to the floor. I had heard them say something about the truck coming that had the drugs. Suddenly, I was hoping for “the drugs.”
Finally, Terri walked in. The paramedic who had cared for Catherine in the past. She was chill and knew us and took one look at the scene and walked straight in. I stepped away – way away. They had a job to do, and I wanted them to do it. I watched a defibrillator come into our house, being carried by one of the huge professionals. “This isn’t good,” I thought. I never asked if she had a pulse or any breath. I figured as long as they were working on her, there was hope. And I preferred to hope than hearing any information that, frankly, I knew enough to know could be wrong. Dead wrong.
Meanwhile, a policeman told me to pack a bag. “That’s a good sign!” I thought. “That means we’re going to the hospital and that will only happen if there is hope.” I ran upstairs again. Brian stood on the stairs. And then I saw Sarah, Catherine’s 10-year-old sister.
I think it was about 5:45 AM and I had hoped she’d stay asleep through all this. Looking back on it, it’s absurd to think she’d sleep through all the sirens and yelling. “I heard you yelling when you closed the door,” she said as tears welled in her eyes. “What’s wrong? What’s wrong with Cackie?” (her nickname for her sister since she started talking).
I have never, ever, hid things from her. Sarah’s grown up being part of Catherine’s life and that includes the medical parts. She knows her oxygen saturation levels and heart rate better than our nurses. “Sarah,” I looked her straight in the eye. “This isn’t good. Cackie isn’t doing well. There are a lot of people downstairs trying to help her. A LOT. And they’re doing the best they can, and I need to get ready to go to the hospital with her, OK? I don’t want you to be scared, so you stay up here. I’ll go check on her and come back and let you know, OK?”
She started crying. “I don’t want Cackie to die. What’s her sat level?” Truth is, she didn’t have a sat level as far as I knew. How did I begin to tell her sister that? “I don’t know, right now, Sarah. They’re still working on her though and that gives us hope. Let’s just keep hoping for Cackie, OK?” That seemed to satisfy her for the moment. A moment.
I ran back downstairs and asked Brian to come up. “What do you want me to do?” he asked as if there was anything either of us could do.
“Just sit with her while I get ready.” And he did. They sat on the couch. I changed clothes in the middle of the kitchen and packed a bag for the hospital, while experts worked below us trying to save my daughter’s life.
With the bag packed, I checked on Catherine and could see they had intubated her and were working to shock her with the defibrillator. There was nothing I could do. I kept saying, “Come on God. Come on Catherine!” I guess that’s the best I could do for a prayer.
I went back upstairs to check on Sarah. Brian and I tagged out and I sat with her. I can’t recall what we talked about, but it didn’t take long for her to want to see. I tried to prepare her. She said she just wanted to peek around the corner. We inched our way down the stairs to a place where she would be able to see if she looked around the corner. When I thought she had the best picture I could paint, I said, “You sure?”
Big brown eyes met mine with a nod, and she bravely peered around the corner to see her sister lying on the floor with swarms of professionals bending over her. She couldn’t see much and then I heard her, “I see her! I see Cackie!” Her enthusiasm filled my soul.
It wasn’t much longer and they were ready to move Catherine to the ambulance. She still looked pale, ghostly yellowish, white. I hadn’t heard anyone say, “We got a pulse,” or anything, really, to suggest anything positive. I kept thinking, “They could pronounce her dead here. If we’re going to the hospital, that must be a good thing.”
As I turned back to look at Brian and Sarah on the stairs, he asked, “Do you want us to follow and come to the hospital?” Normally, I tell him to stay home til we figure out what the plan will be. This time, I didn’t hesitate. “Yes.”
“When do you want us to come?” he asked.
“Now,” and then I left to get in the ambulance.
Two weeks ago, today, I was up at 5:00 AM preparing for my day like usual. Well, not exactly like usual because it’s a Wednesday, and I usually wash my hair on Wednesdays. Two weeks ago, today, I was dragging. The alarm went off and I had to work hard not to hit the snooze and roll over for a few more minutes. I don’t recall why I wanted to be up at 5 AM. Interesting.
I will post more about that morning soon. It’s taking awhile to write about it and I want to allow myself time to write the full story – every detail I can remember – so I’ll have it forever.
I have already done a lot of writing. I wrote an obituary. Well, it wrote itself pretty much. And I wrote a homily to deliver at Catherine’s funeral. That wrote itself also – the morning after Catherine went to be with God. I believe God wrote both of these, so if you find beauty in them, thank God.
It’s 6:46 AM. Time to post.
While I continue writing the details of the that morning in the way I want to remember them forever, I’ll post a link to Catherine’s Obituary.
And I wanted to provide the words of the homily I shared at her Memorial Service because so many asked for it.
Alleluia! We are here today to celebrate Catherine’s miraculous, quiet, important life. A life that started far too early at 25 weeks and ended far too early at 719 weeks – that’s 14 years for those trying to do the math. We used streamers in front of the cross today, which are only used in times of great celebration. At the same time, we are filled with profound, deep sadness that is nearly untouchable. It is sometimes said that the ability to hold two competing thoughts in your head at the same time is genius. So, in this moment, everyone here – and thank you for coming – is genius.
Catherine’s life mattered. Despite all the many, many things …
It’s always interesting how sitting in the hospital makes me want to write. Catherine has pneumonia and we just learned she also has a bowel obstruction. That’s something that wasn’t on my radar!
Her belly has been so distended for such a while that it’s become our normal. Lots of questions – from me, from nurses, from doctors as we arrived in the ER. I think the paramedics may have even asked about it when they arrived Thursday afternoon after I realized she needed to go to the H. “Is her belly always that large?” they would ask. And we would simply say, “Yeah” and move forward.
It’s been bugging me that it was large. We even had her pediatrician check it over time and it’s seemed fine. There are so many directions I could take with this post from this point. Guilt. Disagreement. Hope. Intuition. Frustration. Gratitude. Always gratitude.
I’m grateful we sit in the middle of one of the top hospitals in the world! And I’m grateful for the care Catherine’s getting. I’m grateful for the custodial staff who make sure her room is clean as they minimize the transfer of germs. I’m also grateful for the night I slept longer than I have sleep probably in 13 years! How likely is that in the ICU at Johns Hopkins? And I’m grateful for “my friend” who is making this a little easier to manage. And for so many other friends who lift us up in prayers and white light.
Regardless of what is happening, I purposefully seek gratitude. How can you stay in a funk (and yes! I was in one yesterday!!) when you sit back and think of something – any little thing – that can elicit gratitude?
Like now – nothing is beeping. Not one thing on this whole ICU. I love when God stills the place like that. It’s so rare. And so wonderful. And it’s lasted as long as I’m typing this on my phone. Aaaah. I’m grateful.
Just spent an hour figuring out how to set up email notifications for this blog. Crossing my fingers that it works.