Just Wait and See

A blog about hope, despite the disabilities.

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Three Of Us Together

June 5, 2019 by Ellen Moore 1 Comment

Today marks six months since Catherine died. As I tucked Sarah in last night, she said, “It’s gone so fast, Mom.” I agree. It feels like this hole in our lives just opened up a few days ago in our lives. To think that it’s been six months is simply a challenge to digest. It’s important to me to finish telling the story of the day Catherine died. I wrote it long ago. And I’ve not had the energy to post or take care of my blog. I want that energy to come back and the only way I know to do that is to start to do it. Just start. So, below is the continuation of the story until we went to bed on December 5, 2018. I’ve realized there is no end to the story. But this is the end of that day.

Thanks to Rachel Gozhansky for this beautiful butterfly soaring!

Next

We took turns holding Catherine and eventually my doctor friend came in to tell us what to expect next. I liked it that someone was shining a flashlight on the road ahead of us. She explained that since we had asked for an autopsy, the medical examiner would come and it was 100% up to him as to what would happen with her body. She stopped what she was saying and asked, “Are you OK hearing this? We don’t have to talk about it now. This can wait if you’d rather – or – I don’t even have to tell you anything….” Her voice trailed off in my mind because I knew we wanted to hear. We wanted to be given some path to follow in the fog and confusion that was beginning to grip our brains.

“No, go ahead. We want to know,” I said.

“Brian?” she asked wanted to be sure we were on the same page.

“Yeah, it’s fine,” he said. Brian is a man of few words and when he says something is fine, it’s like the rest of us saying “Yes, please!”

“The medical examiner has the sole authority to decide what to do with her body,” she continued. Sometimes, when it’s a child that has had medical complexities, they will decide they don’t need to take the body for the autopsy. Effectively, they’re saying that they don’t think any foul play occurred. Because that’s their job – to see if anything happened that shouldn’t have or that was illegal. It’s treated more like a crime scene in that situation and it can take months – and I mean MONTHS – like 6 months – for the report to come back,” she explained with the professionalism and experience of years of helping families cross this hurdle.

“What if they don’t take her?” we asked.

“Then, her body would go to pathology at Hopkins and you’d know in a few days. It will happen pretty fast if the medical examiner won’t take her.”

Suddenly, without even knowing this was something to hope for, we started hoping that the Medical Examiner would decide not to take her so we could get the autopsy done faster. And that meant our next stop along this road was waiting for the ME to show up and make his decision. Once again, we were left to wait and see. Waiting gave us more time to hold Catherine. And holding her for so long made an imprint in my body and heart that I hope will stay with me forever.

Parting

While we waited, the attending physician came in to see if we needed anything. He was crying. He literally was devastated by Catherine’s death, and that seemed wonderful and odd at the same time. We learned his name was Eric and he explained that he had a 26 year old son at home with disabilities. “He still crawls up in my lap and I hold him,” he said through his tears. “When I get home, I’m going to hold him in my lap as long as I can.” I think I said, “Yep, that’s a really good idea,” feeling a wave of emptiness rush over me, sending me to tears again.

Eventually, it started to feel harder to hold Catherine and wait. At some point, I crossed from holding my daughter to holding a dead body. I can’t explain how that happened; I just knew we needed to move forward. I didn’t understand that meant walking out and leaving her there – never to come back to her again.

“This is so hard,” I said to the nurse who was patient beyond patient. “We’ve left her a million times in the hospital, so this should be relatively normal for us. But this is different. This is for….” I couldn’t even say it. I started breathing quickly and trying to talk through my tears. I finally took a deep breath and looked at the nurse, “I know this is crazy, but would you just stay with her? I don’t want her to be alone.” Tears masked my words and I’m surprised she could understand me. I had this feeling Brian thought I was nuts. The priest stood beside me, ready for me to collapse or whatever she thought might happen next. “I mean, you don’t have to stay literally until they come get her body, just act like you’re going to stay so I can picture it that way – just so she doesn’t have to be alone when we leave.” For some reason, that nurse said, “Don’t you worry. I will stay with her until they come get her. I won’t leave her.” If she was lying, she was really good at it. I believe she stayed, and that in some kind way, she wanted to stay.

The Beginning of Together

Then we got ready to leave. “What do we do?! What do we do now?” I wailed. “What are we supposed to DO now? Where do we go? What do we DO?” I couldn’t get my head around it. I wanted the next step. My whole life had been filled with the next step. There were so many next steps that I had spent hours trying to perfect systems to help me keep up with, prioritize and track the next steps. For the first time, I had nothing. NOTHING. No next steps. There was literally nothing to do and no one telling me what to do or even suggesting ideas for what to do. In my memory, the only thing I heard was “Go home. Go home and be together.”

“What?? We’re not together! My kid just died. We are anything BUT together!!” Thankfully I had enough whatever-you-want-to-call-it NOT to say that out loud. We just held each other and started walking.

Sarah had decided school was her happy place and she wanted to go to school. So we created a plan, albeit short-term. We’d go by the house, get changed and get her things, take her to school and then go by Cedar Lane to tell them. Even without a plan, we created one. And following it seemed to be the best path out of the hospital corridors we could imagine.

My doctor friend wound up behind us as we left the hospital. I commented to her that I’m sure it was hard on her and I appreciated her coming and that I guessed she had done this hundreds of times. “Not this part,” she replied. “What, walk with a family out of the hospital?” I inquired. “I’ve never done this part,” she said softly. I could tell the words were wrapping around her as she looked for comfort, too. We hugged. I thanked her. And she got in her car to drive away. She looked back as she swung into the seat. And again, I remember her eyes, compassionate and intensely sad. Also filled with love. So much love.

Driving home, I was surprised when I heard Sarah speak up from the back seat. “What are we going to do with Cackie’s room?” Wow. That didn’t take long, I thought. I knew it was innocent and simply inquisitive. She immediately had an answer, “We could make it a music room!” “Yeah, we could do that Sarah. Let’s give it some time and see if we have other ideas,” I replied. Though frankly, I’m still not sure there is anything better.

We entered the house, each of us tentative and likely thinking the same thing – or some version of it – “We’re here and Catherine’s not. She’s dead.” I would have thought I’d remember that moment forever. Tomorrow, it’ll be a month since it happened, and it feels like I’m making up the memory. We stumbled around the house as Sarah got her bookbag and things ready for school. I can’t remember if I made her a lunch. Probably not, but it’s nowhere in my recall bank. Our plan was to take Sarah to school and then go to Cedar Lane School, Catherine’s school, and tell them. Was it logical? Who knows! Did it make sense to us? Yep. So that was our plan.

Sarah’s School

Sarah wanted to be at school at 10:50 to attend a class she liked. She didn’t want to go to one of her classes at all. I assured her she wouldn’t have to go to anything she didn’t want to do that day. She seemed satisfied and we pressed the button to enter the school.

I felt like we had a dark cloud surrounding us as we walked into the school – kind of like the puff of air that surrounds Linus in the Peanuts cartoons. I felt like everyone could tell. Of course they couldn’t. So I had to say it out loud – again.  I looked at the school secretary and took a deep breath. There was a long pause as she looked at me expectantly. The other two in the room looked at me, waiting. Tears pooled in my eyes as I mouthed the words, “Sarah’s sister died this morning.” I don’t think I put enough air behind them to make a sound.

Immediately, they were aghast. I’ve wondered if they thought we were crazy standing there. But really, where else was there to be? I quickly followed the news with “Sarah wants to be here. She says school is her happy place and she wants to be in her happy place.” I didn’t want them to think we were forcing her to come to school. And I wanted to restore some of the oxygen that had left the room with my announcement.

I had tried to alert her teacher via email, but when she’s teaching, she might not see it, naturally. The secretary called to give her a heads up while I walked Sarah back to her classroom. Brian had stayed in the car. I didn’t realize it until I came back that he took the time to call his family. I’m thankful he did.

As soon as we got to the classroom, Sarah’s teacher came outside and gave us big hugs. I don’t think she’d actually gotten the news yet. She just immediately showed compassion, probably because of the look on our faces. We talked about Sarah not wanting to go to certain classes and she assured Sarah she’d find something else for her to do. I made a point of telling her she couldn’t skip the class long-term, but today, she could do whatever she wanted. I think that was pretty smart looking back on it.

I felt so alone walking back to the car – physically and emotionally. It felt like I was the only person left on the planet. I just kept walking.

Catherine’s School

We drove immediately to Cedar Lane. Normally I’m so happy to go there. I couldn’t believe the circumstances that had us in the parking lot this time. We couldn’t park in the handicapped spot. That slapped me in the face as we looked for a spot in the crowded lot. We had never parked in a handicapped spot without Catherine, and we sure weren’t going to start now. I didn’t long for the close parking and convenience. I longed what that placard represented – we had Catherine in the car with us. We’d never, ever, ever have that again.

I remember asking for the principal and them telling us he was in a meeting. “It’s important,” I said as the school secretaries looked at us without asking an additional questions. They had just had a student in Catherine’s class die less than a month prior. “I wonder if those parents showed up on the day it happened for her,” I thought. “I wonder if they can tell when the parents come in together unannounced in the middle of the day,” my brain rattled.

We took a seat to wait for him to finish a meeting and the Assistant Principal saw us as she popped through the reception area.

“Hi! Are you ready for the holidays?” she casually asked? We gave a neutral answer about not quite yet and she continued to tell us about her plans and the stress and what she was thinking about the time of year.

“How can I stop this?” I thought. “If I tell her, she’ll feel awful. It feels like we should tell the principal first. Maybe she won’t connect the dots and won’t feel so bad. At least I won’t have to say it an extra time…” I just stayed silent. And because I was thinking about how none of what she was saying mattered in the slightest, I don’t recall a bit of it. We finally were called in to see the principal.

He’s a pretty tall guy. He wears hearing aids. And he is one of the most exceptional leaders I’ve ever known. He’s warm and caring and kind and has built a culture of optimism and hope for a group of approximately 100 students who many would have shipped away with the thought they can’t learn. Not him, though. He believes every kid in his building has the potential to learn and he employees a staff that, honestly, to the one, fills the halls with cheer and effort and creativity and attempts made all in the name of believing every single kid CAN.

What I remember most about telling him is a great big blue sweater coming at me for a huge hug filled with his tears. He cried immediately and deeply. “No!” he yelled. “This can’t be! I was just in her class yesterday and she was using her device and had so much to say.” He literally sat down to absorb the news. By now, shock had numbed us and we just sat there with him for a bit. After a few moments, we told him what had happened and asked about telling certain teachers who were very close to Catherine.

As I got to the third professional I wanted to tell personally, he interrupted me. I could see the look on his face, a slight smile, the wrinkles around his eyes and the glint of a professional who had probably done this more than one should. “I do have a school to run,” he expressed in a humorous way that actually made me laugh a little. He did let us tell the one teacher she’d had the longest. We cried with her and eventually moved forward to face the rest of the day. We had no more plan. We had no more Catherine. We had no more steps to take. We just kept walking.

Friends

We got home and it was so silent. I’m writing now just over a month after Catherine died and that’s one of the things that seeps through my bones. It’s so silent. Ironic because Catherine didn’t really make much noise. But all the things surrounding her did. The cameras we had monitoring her constantly provided a static white-noise in the background. There were always nurses coming and going, food to make, meds to give, bags to fill, and music. We constantly had music playing because when you’re a kid who can’t see or move, music is a pretty good way to fill the day. When we walked into the house, there was none of that. None. Just dead silence.

I heard a text. “Someone cares!” I thought. It was just after noon when I heard the text. Earlier, I had messaged my neighborhood friends – the ones I had frantically asked to pray – and told them the horrifying news. And now, three-ish hours later, one of those friends texted to say she was thinking of us constantly.

I didn’t hesitate. “Can u come over? I’m at the house.”

Immediately , I got back a lifeline, “Yes. I’m coming right now.”

I remember opening the door about five minutes later. I was aware how nervous she must be. I had certainly never been in this situation. I hoped she hadn’t either. And yet all that mattered right then was a hug. I was so grateful because I didn’t have to be alone.

I guess some might think Brian and I would hold onto each other. We had done that, and he prefers to be alone. I respect that, so I had been wandering aimlessly around and around my house for a few minutes. This visit from a friend was exactly what I thought I wanted. I think I offered to make her tea. I think she said she should be making it for me. I’m pretty sure I didn’t drink any of it. I have no idea what she did. I remember sitting on the sofa, the red one we got with footrests so Catherine could sit comfortably on it – and her simply being with me. I literally have no memory of what we talked about or how long she stayed. I simply know she was there.

A little while later, I think I called another friend and asked her to come over through my tears. I’m not 100% sure though it’s all I can figure out because I know she came over and sat with me while I cried. I’ve always thought it feels awkward to sit with someone who cries. I want to fix it. She just sat with me. And held me. And didn’t try to fix a thing. There was nothing to fix anyway.

My Brother

Earlier in the day, I had spoken to my brother. He’s the one person who has always been able to make me laugh. He’s the only person I wanted to come when Catherine was born so early. And he’s the one person I wanted now. But I didn’t want to ask him. That felt like too much to ask. We were talking on the phone while we drove home from the hospital and he was explaining how he had looked into flights. He wanted to know if I wanted him to come. I told him I didn’t know. I’m pretty sure I was crying. I know, looking back on it, I had no earthly idea what was going on and I was somehow stumbling through actions that feel blurry now, at best. I was irritated with myself for not saying to come. I was irritated that he didn’t just say, “I’m coming.” I was irritated with the whole situation I found myself in, and I was having a hard time putting sentences together. Decisions felt like a complexity I couldn’t manage. Just before we hung up after telling him I couldn’t decide whether he should come or not, I heard myself say, “You have the address?”

“What?” he asked, somewhat between indignation and uncertainty that he’d heard me right.

“Do you have our address? Do you need me to send it to you?” I said a little slower and probably a little louder.

“No, Ellen, I have your address.” And I heard him chuckle a little as if to say, “You’re my sister, of course I know your address.”

I’ve not asked him if he knew what I really wanted in that moment. As I hung up, I thought, “Well, I guess that gives him an answer, doesn’t it?” And six hours later, he was walking in our front door, carrying a brown bag that let me know he planned to stay the night. I felt my shoulders lower momentarily.

My friend met him at the front door and left rather quickly after a hug of support. In hindsight, it almost seems like my friends and my brother were working in shifts. I don’t think there was actually a plan like that. It simply worked out that way.

Decisions

She and I had talked about the bookgroup I led in our neighborhood. I told her I didn’t think I could lead it. “Do you want it to still happen?” she asked me. I didn’t care. I could barely think about anything and I heard the decision bounce around my mind pinging off one wall of my head into the other one. “I can’t decide. Will you just decide for me and take care of it?” For some weird reason, amidst all the things I remember and all the things I forgot, I remember seeing the email come out from her that said it was cancelled for the evening. I was grateful she had handled that decision and communication.

The next decision came when it was time to eat. The church was bringing over some food. My brother had heard about the wonderful Indian restaurant in our neighborhood. I did like Indian. Yet, nothing sounded good, and I wasn’t even sure I was hungry. How can I remember the difficulty of this decision and have no awareness of Brian or Sarah in these snapshots of memory?

“Ellen, eat what you want,” my brother said. “If we throw some out, it will be OK. If you want some of all of it, that’s OK. If you want something else entirely, that’s OK, too. Do what YOU want.”

“What I want?” I thought. “What I want is Catherine. I don’t care about what I eat!” I could never say this out loud though. That’s the stuff of movies. That’s the drama of books. That’s not what you say out loud. No matter how loudly it bangs around your head.

We ordered the Indian. We ate the things from church, also. We had a smorgasbord of surreality – if that’s even a thing.

My brother tried to fill the time with wise counsel as he’s known to do. It washed over me and at times, I laughed, wondering if the fuzziness I felt that dampened his words would go away any time soon. Eventually, he left to his hotel room. I had wanted him to stay with us. It felt safer. It felt more secure somehow. He said that same admonition others had said, “You need to be together, Ellen, just the three of you.” Why did everyone think this? Did anyone realize that being together just the three of us only emphasized the fact that we weren’t four anymore? Did anyone realize that the silence that came with the three of us, despite Sarah’s singing and laughter and constant slime making and running and jumping, was so palpable that it made me feel like some invisible attachment was filling the room, connected at my shoulder, and it would not go away? Did anyone realize that all I wanted was not to be alone and I was too scared and numb and afraid of being selfish to say that to anyone? It didn’t matter. He left. And I felt alone.

Together

We have a routine in our family where Brian, Sarah and I watch “a show” before bed. It’s a bad habit. And I’m to blame. I typically run so fast and so hard that I need a way to wind down before bed. I used to drink milk and eat cookies before bed every night while watching MASH. Then it became Two and Half Men re-runs. Any number of “stupid 30-minute shows”, as I like to call them, have hit the playlist as they’ve numbed me to a point of relaxation that helps me slumber.

I assume we watched a show. I assume we watched more than one show to keep from hitting the silence and reality of the pillow. I know I took Ambien. Thank God I had some on hand. The best part of the day – this gross, dark day where my core was yanked from my being – was when Brian, Sarah and I all crawled into bed together. I remember the comfort I felt as Brian crawled in with us. I quickly wrote some memories in my journal, terrified I would forget details of the day. I remember Brian positioning the blankets and sheets around his body and therefore ours. I remember thinking how weird it was that we didn’t have a nurse in the house. I remember the hum of the fan. And the darkness after I turned out the light. And I remember wondering what would happen next. Maybe this is what it meant for the three of us to be together.

Filed Under: Matter of Fact, Uncategorized Tagged With: death, hospital

Juxtaposed. The Story Continues

April 12, 2019 by Ellen Moore 4 Comments

Nurses came in to tell us they were going to need the room, so they were going to move us to another one where we could spend as much time with Catherine as we’d like. I remember thinking how nice that was and at the same time thinking, “Of course they need the room – they can’t just wait around for us.” Little did I know that that would be one of thousands, if not millions, of competing thoughts that were in store for me. Some bubbled up with cynicism; some with ache, some with unwavering hope, some with love, some with anger, some with confusion, some with dismay… the list goes on and on.

That meant our next stop was room 12 – my favorite number and Brian’s. Catherine died in room 8. Sarah waited in room 7 – the number for perfection and completeness. And we said goodbye in room 12. Brian immediately wanted to hold her. He treated her as if she were alive. He talked to her and covered her up and made sure she wasn’t cold. “This all looks so normal,” I said at some point to someone. “We’ve held her a million times when she’s sleeping or out of surgery and she looks just like this.” I don’t think I ever said it out loud, but the implication was desperately waiting under the surface… “Are we sure she’s not alive?” I wondered. Maybe she was. I had to keep the hope suppressed, though. It kept wanting to fly up and carry me away, only this time there was nowhere to carry me.

I finally determined that I wanted to hold her. She held much easier than she had in life. She didn’t resist or arch or push back with her own will. Instead, she snuggled. She curled. She fit exactly in the little pockets of my body that ached to have her fill. I’m so glad I held her. I wish I could still hold her. I wish I had held her more when she was alive. That was usually Brian’s role. He always held her best and she always loved to be in his arms. I think on that day, she liked being in my arms, too.

I imagine her spirit floating above us like on the movies where they talk about near-death experiences. I imagine her watching us hold her and telling her how much we loved her and hearing me hum Brahms’s lullaby – the same one I’d hummed since the day she was born and nearly every single day in the NICU.

Sometime – I can’t recall exactly when – the hospital chaplain showed up. He looked like Santa Claus. He had a fluffy white beard and I thought, “Wow, Sarah gets a visit from Santa Claus!” Since it was 20 days before Christmas, it made sense. Santa does visit kids in the hospital before Christmas. He said a nice prayer with us, expressed his regret that he hadn’t gotten there sooner, and we changed rooms for him to meet Sarah. I think I asked her, “Who does he look like?” How could it be that Brian was holding dead Catherine’s body a few rooms over and I was talking with Sarah about Santa Claus? Does that even make sense? Truth is that none of this makes sense. None of it! So, if the man looked like Santa Claus and I wanted to think of it that way, then so be it.

I kept bouncing back and forth between Sarah’s room and Catherine’s room. I was used to that. That seemed normal. I’ve balanced the two of them for 10 years, so that felt productive and comfortable and safe. Plus, my doctor friend was hanging out with Sarah and that helped a lot. Her brother had died when she was young, so she knew what Sarah might be experiencing. She gave her some wise perspective, which she shared with me so I’d know.

“I told her she’s going to feel sad at times and she’s going to feel happy at times and both are OK. And you don’t need to feel guilty for feeling happy. It’s OK to feel happy, too,” she explained.

I’ve tried to hold onto those words for myself, actually. It’s hard. I feel incredibly guilty during the little moments where I start to feel happiness eek into my soul. For example, Sarah sang in her first solo performance at a restaurant the day after Catherine’s memorial service. She was really good. I was impressed she was able to get up there and pull it off given her lack of sleep and all the stress surrounding her. I was proud of her. And in awe, frankly. And I felt a little happy about it. As soon as I recognized it as happy, though, I felt guilt put a lid on it and push it away. “How can I be out watching Sarah in a restaurant when Catherine died less than 2 week ago?” Honestly, that feeling comes up all the time and it feels worse than most of the feelings I have right now.

Eventually, during all the bouncing back and forth, my priest showed up. I had texted her when we were in the ambulance, and I guess she decided she needed to come. She was a welcome presence and she anointed Catherine which felt safe. I was holding Catherine when she leaned over to give me a hug and my ear got pressed against her chest. All I could hear was her heartbeat, loud and strong. This sound – or really absence of sound – juxtaposed the silence I had heard when I listened to Catherine’s chest to convince myself she was no longer alive. It was too much. I broke down into the loudest, strongest tears I had had in the moments since I had been told they were going to stop CPR. Catherine didn’t have a heartbeat any more. This woman did. And that was the difference in the rest of my life. That was the moment when I think it actually first really hit me. My 14-year-old baby was dead.

Filed Under: Acceptance - or Not, Matter of Fact

121

April 7, 2019 by Ellen Moore 2 Comments

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?

Filed Under: Uncategorized

Listen for Singing

February 26, 2019 by Ellen Moore 3 Comments

Deep in the mud and scum of things, there something always sings

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.

Catherine’s wheelchair waiting for someone new.

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.

Filed Under: Hope, Uncategorized Tagged With: hope

The Scariest Moment of My Life – By: Sarah Moore

February 1, 2019 by Ellen Moore 12 Comments

The budding author of the family.

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.

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The News

January 17, 2019 by Ellen Moore 4 Comments

My doctor friend arrived shortly thereafter. Seeing her interrupted my thoughts and pleas to God that THIS was not supposed to be the way our story ended. I saw her walking down the hall and recall thinking “Wow, she got dressed nice!” I guess I expected a “roll out of bed and hop in the car in a hurry” type of a look. She looked like she might on any other day I had seen her in the PICU though I noticed something different. She had badges hanging around her neck – lots of badges that made her look and actually BE official. They gave her access. Those badges meant she was there for a purpose. She probably wears them every day at Hopkins. I only noticed them as she walked down the hall this time.

Sisters Forever. Sarah and Catherine on the first day of school, 2018.

She set down her bag and leaned in as I was leaning against the doorframe. Some of the many people assembled had to move out of her way as she walked toward me and started leaning toward me ever so slightly. It looked as if she were going to give me a hug. I didn’t want to waste those seconds, so I waved her toward Catherine and barely whispered, “Go be a doctor.” She didn’t miss a beat and turned to her right. As she entered the room, I noticed all the professionals parted, somewhat like the Red Sea, to let her pass and get close to Catherine and the attending physician. I didn’t want to watch any more. I finally left my post and went to the room next door where Sarah was on her iPad and Brian was doing what he does so well – waiting.

Time warps when you’re in this sort of situation. I have no memory of what we talked about or did while we waited. I couldn’t even take a guess about how long we waited. I don’t recall if I got up and checked on Catherine or if I went to the bathroom or if I told Brian what happened when my doctor friend got there – all things that seem plausible. I do remember what happened when she and the attending came into the room however long later. And I wish I didn’t remember that because then, maybe it wouldn’t have happened.

I’m writing this, 24 days out, and I still wonder if it were a dream and wish that it were. I still see my doctor friend’s eyes, filled with so much compassion, knowing what she was about to say. I ache for her in that moment. She looked me straight in the eye and said so softly that I could barely hear her, “There’s nothing more we can do.” It was really more like she mouthed it than said it out loud. Or maybe that’s just how I heard it. I looked at Brian and Sarah and felt my heart drop to the floor. Actually, it was more than my heart – it was everything I’d ever known to be inside me – it all fell out of my body as I tried to absorb what she said. I’m sure I only recall bits and pieces from that moment forward. At some point, I heard her say that they were going to stop doing CPR. “It’s not your choice. We needed to come and tell you this is what’s going to happen.”

I must have looked at her with a face full of hope because I don’t recall asking anything. I simply remember her saying, “It’s been too long. There’s too much damage. Even if she were to come back.”

In a split second I thought, “That doesn’t matter – her brain and body were already damaged. Let’s keep trying.” I never said that out loud though. I knew.

I knew in the way I had known she was dead the minute I looked at her in bed at the house when the nurse said she wasn’t breathing. And I knew it was time to let go. I knew my doctor friend was right. As much as I didn’t want any of it to be real, I knew.

She continued, “They did everything right. We couldn’t have done any more at Hopkins. We wouldn’t have had anything there that they didn’t have here. They did a good job here and tried everything.” She emphasized ‘everything’ with such emotion that I knew she really meant it. It came out more like EVVVV-RY-thing.

“And the story that your nurse told you?” she continued, “that seems plausible. Given the timeline and her body – her body was warm – that seems to be a plausible story. I don’t think she fell asleep and missed this,” she said. Somehow that was comforting. After more than a decade with nursing, we had had too much experience with nurses falling asleep. Whether that did or didn’t happen, I thanked her for giving us that story. I knew the story we held in our head would form the basis for our healing down the road.

When I first heard the news, It took a few heartbeats for the tears to come. I remember thinking that was odd and wondering why I wasn’t crying. Did I not care? Had I prepared for this mentally somehow? Then with one look, Brian and Sarah and I collapsed into each other’s arms as the tears fell out of our bodies. I think the doctors evaporated to leave us with the hole in our family we would never ever be able to replace. And in that moment, I could barely even comprehend it.

The next event I remember was my doctor friend and the attending coming in and telling us they were cleaning Catherine up and that we could go see her in a few minutes. I can’t even fathom what I was thinking or feeling then. We walked into her room and they had put her in a yellow hospital gown. She actually looked great. “I never knew you looked so good in yellow, Catherine,” I said as I leaned over to give her a kiss. And weirdly I thought how I did know she looked good in yellow and why didn’t we dress her in yellow more often? Looking back on it these thoughts feels surreal. They make no sense. And then there was a thought that made perfect sense – She looked just like she always did – lying still. Eyes closed. A faint pink in her cheeks. Catherine.

“She looks normal,” I said to Brian. “Maybe she’s not dead,” I thought to myself. And then I saw a stream of blood flow from the corner of her mouth. “She doesn’t do THAT normally,” I said and asked Brian to have them come clean her up again as I tried to hold back the tears. They had warned us it might happen, but I didn’t want to see it. “I don’t want this to be my last memory of her, Brian. This isn’t the image I want.”

He had been wiping the blood with the blanket just like it was drool. He used the exact same tenderness I had seen in him every single day of her life. And he was crying. I had only seen him shed a tear maybe one time in the past, and I wasn’t even sure it happened. The day we learned Catherine was blind, when she was still in the NICU, he turned away for a moment, and I always believed he must have cried a bit. I never asked though. Sometimes dignity is more important that knowledge. This time, I watched the tears flow as he touched her like he always had. “Hey Catherine!” he even said as we had walked into the room, just like he said when he greeted her after school.

We took some photos. That may seem odd. It did to me too. But when it’s the last time you’ll see your 14-year-old baby, you don’t want to risk forgetting. And they’re some of the most beautiful photos I’ve ever taken of Brian and Catherine. Except for the expression on his face, you would simply think she was sleeping beside him.

After a few moments, I went next door to see if Sarah wanted to see Catherine. She did. She understood about death because in the past 14 months, her pet ladybug, Ellie, had died; her hamster, Squeak, had died; her Gran had died; and her Ma Maw had died. And now her sister had died. That’s a lot of death for anyone, much less a 10-year-old. No wonder when I get stressed at home now and start yelling, she’s terrified that I’ll not be able to breathe and then pass out and die.

Sarah bravely walked into the room and stood beside her sister. She reached out to touch Catherine and run her hands through her hair. She leaned over and gave her a kiss. Though she had said she didn’t want a photo with her, I snuck some from behind her head. “She doesn’t know what she wants, right now,” I thought. None of us does. And the other day I caught Sarah looking at photos of us with Catherine after she had died. She paused for a long time on the ones of her reaching out to touch Catherine. I think we all must want a connection to “the last time” – whatever the last time is.

Filed Under: Best Of, Matter of Fact

The Hospital

January 9, 2019 by Ellen Moore Leave a Comment

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.

Medical History Screenshot

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:

     Come.

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.

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What Happened?

January 4, 2019 by Ellen Moore 12 Comments

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.

Here goes….

Wanna Help Me Learn Image

Always loved Catherine’s smile in this photo. Plus she’s standing!

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.

Exhale.

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.

Filed Under: Uncategorized

Two Weeks Today

December 19, 2018 by Ellen Moore 6 Comments

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.

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It’s 6:46 AM. Time to post.

Catherine’s Obituary

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.

Homily

And I wanted to provide the words of the homily I shared at her Memorial Service because so many asked for it.

Homily 12.14.18

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 …

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Filed Under: Best Of, Uncategorized Tagged With: funeral, homily, memorial service, obituary

Waiting Again…

November 19, 2017 by Ellen Moore 8 Comments

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.

Filed Under: Uncategorized

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Hi, I’m Ellen

I’m just a mom making my way, but my way is a little different. And yet, very much the same. I have a 13-year-old daughter, Catherine, who was born at 25 weeks and weighed one pound, nine ounces. Despite a very severe brain bleed, she lived and inspires me every day with all she works so hard to do... Read More…

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