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.
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.
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 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.
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.
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.
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.
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.
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.