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

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

Writing to Be Cool

September 4, 2016 by Ellen Moore 2 Comments

If I don’t write, does that mean I’m no longer a writer? And why haven’t I written in four months, especially after I made a commitment to myself and to readers that I would? Well, for one, we’ve had an amazing summer and I’ve been soaking it up like the sunshiny rays I don’t want to disappear on this final summer weekend. And for another thing, I’ve started a business that is keeping me very busy with an obsessive all-consuming kind of focus. Those are just excuses though, aren’t they? The truth is that if I wanted to write, I would be writing. Right? And since I’m not writing, I must not want to write. Is that right? Or is that wrong?

I actually do want to write. I don’t feel like I have much to say right now, though. I don’t want simply to recount the past 4 months, amazing as they have been. I remember wanting to write about Catherine going to camp by herself for a week and realizing I had no idea what to write because I had no idea what happened!  And I don’t want to write about sadness or loss or frustrations or any of the other things I think about related to the disabilities of our lives. I wrote a post about nurses and training them and I never posted it. It sounded too negative and I don’t want to sound negative. That’s not the point of this blog.

I’m working on redesigning this blog so it looks more current. I’m actually working with a woman in South America and have spent countless hours picking out themes that might work so she can make the transfer of all these thousands of words into a format that is more readable and represents Catherine better. Maybe that’s what’s been holding me back… I think I can reflect Catherine better.

We went back-to-school shopping recently as virtually every other family in America does. Sarah proclaimed, “Catherine needs to look cooler!” And so we set about to find some clothes that would make that statement a reality. We got her a jean jacket and vest and some cool skirts. And as she headed back to school, she certainly looked cooler. She even looks cool heading to church! IMG_0012So stay tuned as this blog gets ready to transform and look cooler as well. And I’ll work a little harder at writing – hopefully to reflect Catherine as the cool pre-teen she is.

Filed Under: Matter of Fact Tagged With: writing

36 Nuggets of Family Travel in Copenhagen

August 16, 2015 by Ellen Moore Leave a Comment

Around Town

The

The “classic” view of Copenhagen – the neighborhood of Nyhavn. This photo was taken from the bus tour the day we arrived and were having a hard time staying awake.

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National Gallery – Not to be confused with the National Museum. Sarah’s walking to the middle of the reflecting pool to sit in that chair in the middle. Wouldn’t you?

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Showing off the art after drawing all afternoon.

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In Denmark, bottles are marked for recycling. You pay a deposit with every bottle you purchase. Then, you can return the bottles for money. We “paid” for a lot of groceries this way. And many people in CPH pull bottles from the trash to make money. About 4 bottles would get you a buck.

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We put Sarah’s Fanta bottle in right as they needed to change the crushed bottle container. She found her bottle sitting on top – the one with the orange label.

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One of the most interesting things we learned is that people in CPH believe there should be life in the cemetery. So they are often designed like beautiful gardens and on nice days, people go there for picnics and sunbathing and to play games. I like this idea.

Hans Christian Andersen is from Copenhagen and this statue of The Little Mermaid is the most visited tourist attraction in the city. Sarah loved seeing her and we went twice.

Hans Christian Andersen is from Copenhagen and this statue of The Little Mermaid is the most visited tourist attraction in the city. Sarah loved seeing her and we went twice.

What Do They Eat?

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Cheers with water the night we arrived. We made it.

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Gross Hotdogs. Sarah didn’t even want to try it.

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It’s always fun to see how McD’s is the same and different in other countries. Mostly the same, though the burgers tasted different. Probably actually meat!

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Salmon Smorbrod (open faced sandwich) and one with Roast Beef. These were really good at Louisiana Art Museum.

IMG_0547 On the Go

This is where we're going. So exciting.

This is where we’re going. So exciting.

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All on the plane and ready to take off. Eight hour flight? Piece of cake. The girls did great.

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We missed our stop on the bus and had to walk back to the National Gallery. Good shot of the way sidewalks are designed. It took a lot of concentration to keep Catherine’s wheelchair between the cobblestones. The smooth path on the right is bikes only.

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They look like seasoned travelers, don’t they?

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A great hand in Uno passes the time on the train well.

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Waiting for the bus. We traveled low budget which meant lots of busses and trains. Next time, we’ll look into renting a van.

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On a hot day, cold air blew up from this grate. Made a cute photo op.

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This photo shows an example to anyone who ever wonders why I still adore my husband. Thanks Brian. You could have gotten really irritated, and your quick shift to the escalator made me fall in love all over again.

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Love how Sarah is watching to be sure her sister will be safe going down the stairs. “Be careful Daddy!”

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Now, this is traveling in style!

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Bye Bye Copenhagen! Sarah cried when we left. So glad she had a great time.

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Leaving Copenhagen, Sarah wanted to give the passport control officer all the passports. That’s a lot of trust to give a 7 year old! She did a great job and kept them all very safe.

    Sleeping Abroad Is Different

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IMG_0060 We stayed in the Urban House – a hostel that had a hip, young vibe with a surprising number of families. Bean bags were welcome the morning we arrived after our long flight.

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Woke 3 mornings in the hostel to this little face looking over the top bunk.

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Catherine had a hard time adjusting the first morning and slept a lot despite the breakfast and activity surrounding her. She adjusted quickly after the first day.

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In the middle of the trip, we went to LegoLand and stayed one night. You probably can’t tell, but the bunk beds are toddler size and Ellen had to sleep there. Good thing I curl up at night.

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The last half of the trip, we stayed in a flat in Fredericksburg that we booked via Airbnb.com. It was neat to see how locals live and to be away from the center of the city of Copenhagen. We relaxed, took day trips and had a much better time out of the city. Yes, I’d use Airbnb again.

Sheer Beauty

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Filed Under: Matter of Fact Tagged With: travel

Superlatives from Copenhagen

August 16, 2015 by Ellen Moore Leave a Comment

Now that the laundry is done – well, at least clean and in the hampers if not folded and put away – and we’re over the jet lag, we’ve taken a couple of nights to reflect on our journey. Thought you’d like to read our overall impressions of our trip in a superlative kind of way. Thanks so much for reading!

“What’s the best thing you did?”

Louisiana Museum of Modern Art –  unanimous!

A view from the museum to Sweden.

A view from the museum to Sweden.

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The museum had supplies for kids to create their own art based on exhibits in the museum.

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Everyone worked on a project.

Biggest Waste of Money –

Hotdog and Fanta at a street vendor. (Ellen) He charged us over $10 for the Fanta and the hotdog was gross.

I'm not eating THAT!

I’m not eating THAT!

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It’s a weird bright red color covered with mustard and “fatty pig parts” (we later called those bacon), mustard, onions and did I mention the pickles? Yuck!

LegoLand hotel (Sarah, though she loved staying there!) It was about $500 for the night. We could have stayed for less and been really close to the park. It was a cute room though.

Look at all the FRIENDS.

Look at all the FRIENDS.

Funniest Moment

Middlefart! (Sarah) – Yes, that’s name of a town and we couldn’t control ourselves laughing about Topfart, Bottomfart and Middlefart. Or Leftfart, Rightfart and Middlefart. Or our favorite – Hotfart, Coldfart and Middlefart!

Can't make this stuff up.

Can’t make this stuff up.

Nine translations for Ketchup on the packet (Ellen) – Look closely at this ketchup packet. There are nine different translations for Ketchup and they all actually say Tomato KETCHUP! Contrast that to the fact that when we were at the train station, we couldn’t find a single sign translated into English and you’ll understand the IRONY of this.

IMG_0304Scariest Moment

Walking down a seedy street looking for dinner (Brian) – We moved past the tatoo parlors and into most likely drug zones before we realized it and turned around. We thought we were following the directions to a restaurant.

Having the Metro doors close on Sarah (Ellen) – She didn’t understand the need to get in quickly or it would be gone. I yelled more sternly than I think I’ve ever yelled at her, “GET IN!”

Haunted Ride at Bakken (Sarah) – A creepy looking girl turned into a ghoul unexpectedly. Yikes!

Runner up – Nearly getting a fine for not having bought the right ticket on the train. Fine would have been $750! Don’t worry – the story will make it to “Most Absurd.”

Most Frustrating Moment

Not being tall enough to ride the spinning ride at Bakken (Sarah)

Walking around pulling the luggage and pushing Catherine on the rough roads (Brian)

Brian pushed/pulled the luggage, we all wore daypacks and Ellen pushed Catherine. Made for a tight parade.

Brian pushed/pulled the luggage, we all wore daypacks and Ellen pushed Catherine. Made for a tight parade.

Closed elevators making us have to push and pull Catherine up and down stairs (Ellen)

Does this even need a caption?

Does this even need a caption?

Best Unique Use of Technology

Door Codes at Urban House (Ellen) – Our hostel didn’t require keys. At check-in, they emailed you a code and room number. You simply went to your door and entered the code. Upon check-out, it reset to a new code for the next person. And it was all managed by a computer at the front desk.

Cameras on the airplane (Sarah) – We could watch take-off and landings as well as see the land beneath us.

Best Travel Magic

Airplane Food (Brian and Sarah) – Yes, they really both loved the beef stew and potatoes.

SAS rep taking us to the lounge (Ellen)

Living the life when our flight was delayed.

Living the life when our flight was delayed.

Most Absurd Moment

Getting Soaking Wet (Sarah) –  When it rained on us in Tivoli, it poured! We were so wet it didn’t really matter that Sarah wanted to splash in puddles all the way home. I can only imagine how a kid must love the freedom to do that.

Moving the Wheelchair to Make Room for Bikes (Ellen) – We bought our tickets for the train to LegoLand and I told the woman we had a wheelchair. When we got on the train in the right car, we parked the chair in the area where seats fold up and took Catherine back to our seats on the train. The train attendant told us her chair couldn’t go there because they needed that room for bikes! When I asked where it should go, she actually made us take it off the train at the next stop and go load it into another car! Thankfully, some nice (non-Danish) guy helped Brian do it.

See all the bikes? Catherine got to stay in her wheelchair this time.

See all the bikes? Catherine got to stay in her wheelchair this time.

Buying a Train Ticket (Brian) – We bought our ticket for zones 1, 2, 3, 4 and while coming back from Louisiana Art Museum, we learned from the train attendant that we were in zone 40 and our ticket was no good. We had read the fines were $750 (making this a runner up for Ellen’s scariest moment!) and fortunately, the attendant showed us some mercy when we expressed utter confusion. You look at this map and tell me if you wouldn’t have been confused! We had so much difficulty on the trains we finally routed ourselves away from Central Station and opted for the Metro. Much easier!

Red is 1, Blue is 2, then Yellow is 30 and Purple is 40. Who can even see that?

Red is 1, Blue is 2, then Yellow north of Red is 30 and Purple north of that is 40. The Blue south of Red is zone 3 and the Yellow south of that is zone 4. What? And who can even see that?

Very Favorite Food

Waffles with Cream (Ellen) – OH – MY – GOSH!!! These are amazing and I wish I had taken a photo for you to see. Imagine 2 crispy waffles, buttery, shaped like a boat with cream in between them. You can’t. That would be one reason to go back. They had made them since the 1800’s.

Chicken Nuggets at Bakken (Sarah) – She said they were something really special and gobbled them up quickly to go ride more rides.

Hamburger Steak and Gravy at Bakken (Brian) – I guess it was worth all the back and forth of “Where shall we eat?” prior to choosing the place. Whew!

Best View

Tivoli from the Skychair Swing Ride (Sarah)

Sweden and the sea from Louisiana Art Museum (Ellen)

Countryside out the Window of the Train (Brian)

The Most Craziest, Awesomest, Interesting, Silly, Cool Thing

Tivoli Show (Sarah) because they made sailboats sail on the stage

Doesn't this look exactly what you imagine Tivoli to be like?

Doesn’t this look exactly what you imagine Tivoli to be like?

Penguins (Sarah) – They were visible from the roller coaster at LegoLand when it went through a tunnel. It really was a pretty cool idea.

Funhouse Bakken (Sarah) – The floors moved and stairs were set at odd angles making it extremely difficult to walk. We walked very slowly initially and then Miss Confident, Sarah, ran through it the second time.

Music Demo at Louisiana Art Museum (Ellen and Brian) – We listened to a 3 piece ensemble on the lawn of the museum overlooking the water to Sweden. We realized one of the men was “playing” his computer. As he moved his body, his computer was producing sounds in parallel. If he waved his arms wildly, the music was fast and loud. If he wiggled his hand, the music might actually be the sound of raindrops. Then he would sweep his arms in large arcs and the music would sound like waves. It was very interesting. Afterward, I asked if he’d ever used the system with kids with disability. He said he’d never thought of that and asked us to bring Catherine over to try it. Sweet success. Catherine moved to make the music herself. Wow. That was worth the price of the airfare. I’ll be looking him up to see if there is a way we can play with a copy of it. Turns out… he is the guy who wrote the software! I love when the world works like that.

Advice to Other Travelers

Go to the amusement parks – especially Bakken. (Sarah)

Stay outside the city – much nicer. (Brian)

Figure out how the transportation system works as soon as you get there. (Ellen) Pick up a map of the whole system at the airport when you arrive. We found it our last day!

Advice for Wheelchair Users

Have patience.

Work out before you go if you’ll be the one pushing the chair.

Embrace the wobblestones.

Finally

We believe there is a lot more world to see before we’d head back to Copenhagen. We had a great time and accomplished our 2 objectives, so that makes for an excellent trip. Most important – we learned we can do it again. Where shall we go next??

Filed Under: Matter of Fact Tagged With: travel

Home!

August 11, 2015 by Ellen Moore 2 Comments

Nothing like getting your first arrival stamp coming back into the USA!!!

  
I’m so proud of both these girls!! They got the travel DNA from my grandmommy and did great on our journey. Welcome home girls. We did it!!

Filed Under: Matter of Fact Tagged With: travel

Wow!

August 11, 2015 by Ellen Moore Leave a Comment

I think I know what it felt like to be snuck across a border during a war. Shortly after SAS made an announcement that our 12:20 flight was delayed to 13:30, some very nice man wearing a uniform appeared asking if we preferred to wait in the lounge. Sure!

He took us, our boarding passes and waved our passports to get us back through customs. Then he led us to the SAS first class lounge with a nice buffet and drinks for us to enjoy while we wait. 

He explained that TSA is doing an inspection and everything must be 200% right so he hoped we would only be waiting for 30-45 minutes. Of course if this were a movie plot it’s possible he just made us miss our flight! Guess we’ll just have to wait and see….

  

Filed Under: Matter of Fact Tagged With: travel

Delayed

August 11, 2015 by Ellen Moore Leave a Comment

Apparently there is a security delay on our flight. Happy happy joy joy. The crew is providing water and juice so people don’t leave the gate area. And Brian’s theory is that they are training some newbies. I’m sure we’ll never know. It’s a good time for Sarah to practice tying her shoes!

  
And our only family selfie!

  

Filed Under: Matter of Fact Tagged With: travel

Heading Home

August 11, 2015 by Ellen Moore Leave a Comment

So much more to write about the trip and so little tIme to write. Yesterday we filled the day with amusements from Bakken, the world’s oldest amusement park. 

  
Not much for Catherine to do other than smell the amusement fare and listen to the really good music. Sarah, however rode nearly every ride – some as many as 10 times!

   

 Thought to be the world’s oldest rollercoaster. 

And now we are boarding our flight. So gotta go for now. 

  

Filed Under: Matter of Fact Tagged With: travel

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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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