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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.

Two Weeks Today

December 19, 2018 by Ellen Moore 5 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.

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 …

The Present of Being Present

September 23, 2016 by Ellen Moore 2 Comments

This morning, I read a devotional about being present. It was about not looking into the future and worrying and about not looking into the past and regretting. It framed the mystery of having hope for heaven while at the same time, experiencing heaven here on earth – in the present. As I reflected on that idea in quiet stillness, I observed thoughts about Catherine and all I wished for her and all I wished I had time to do for and with her. The reality is that she simply doesn’t get that much time from me these days. I wish it were different and I regret how it is. Hmmm… that didn’t seem to align with the spirit of what I’d read. It’s amazing how active the brain becomes when one is trying to be still.

Sometimes Sarah wakes up super early and comes into my bathroom where I typically sit to have this stillness time. I sit on a small rug beside the shower. OK – it’s the bathmat! Let me not glorify it needlessly. Usually, when she comes in and sees me in quiet stillness, she does what she needs to do and quietly closes the door behind her. I’m aware of her, and I don’t engage with her as I continue to practice my focus on God. Today, it was different.

Today, she came in and I could feel her near me. I didn’t open my eyes. I could sense her all around me as if she were looking at me and wondering what to do with me sitting on the floor. I had a vision of a mime looking intensely at an object and moving exaggeratedly all around it. I wondered what Sarah was thinking and what she would do. Amidst all that flurry, I did finally think about God’s call to be present. And then, I was surprised to hear a thought spiral toward me – “Whenever two or more are gathered in God’s name, He is present.” Keeping my eyes closed, and trying to stay in the present, I reached out my right hand and turned up my palm. I just left it there on my knee. It didn’t take even a second and Sarah put her small palm inside mine.

No words.

Just a small, still palm, nestled in mine while I tried to stay focused on God. I realized this was being present. This was the moment. There was no “what next?” There was no regret. All the “to do’s” dropped out of my mind. I felt God surround us and thanked Him. I even turned up the corners of my mouth and smiled a bit. Sarah began to squirm her little hand – just a tiny bit. That woke me to the present of that moment. And I felt her move her hand again, only a little. And then I recognized that moment. Each and every single moment was unique and an opportunity to come back to being present.

When I went downstairs to put Catherine on the bus, many moments had already slipped by in the hustle of making lunch, the quick filling of a cereal bowl and covering it with milk, the auto-pilot straightening of the counter. Those moments went unnoticed in a blur. When I gave Catherine “hugs and kisses to last all day,” just before putting her on the bus, I looked her in the eyes. I rarely do that. For some reason, I looked in her eyes and noticed they were red. They were open. I thought for a split second, I wonder if she can see me. And we had a moment. God was present with us in that moment, too. Maybe I don’t need to do more with Catherine and try to fabricate the time for it. Maybe I don’t need to regret all the things I’m not doing. And maybe I can rest easy and stop planning all the things I wish I were doing. Maybe I simply can recognize these moments that we already have. There are lots of those. Maybe I can appreciate the stillness that is already there – if only I am present.

What Dishwashing Taught Me

May 5, 2016 by Ellen Moore Leave a Comment

“Mom, what’s Catherine going to do? You said we all have to do something to contribute to the family.”

Oops! She got me. “What can I have Catherine do?” I thought quickly. “That’s a great question, Sarah. What can Catherine do?” I said to fill in some time so I could think.

This rapid exchange happened one night while we were clearing the dinner dishes from the table. We’re trying to help Sarah learn the habit of clearing the table, and I had suggested she was old enough to put her dishes all the way into the dishwasher, not just in the sink. Then I added to it and said she was old enough to put all the dishes into the dishwasher, not just hers. She had no problem with the request. She simply calculated that if she had to do something, so did Catherine. It was a reasonable point, and proof that she views Catherine as capable of carrying her fair share. If I really believed Catherine could do anything as long as we’re a little creative about it, I realized I needed an answer for this question. And fast!

Plus, what 8 year old doesn’t have a powerful sense of what is fair in the world – especially when it comes to siblings and anything even remotely similar to a chore?

Sarah proceeded with her stream of consciousness giving me time to make up something quickly. My brain vacillated between excuses for why Catherine couldn’t do something to thinking about what she could actually do. I confess I felt stumped.

As Sarah said, “Mom, I’m going to wash the dishes…” I realized at least I could help Catherine put them in the dishwasher so I finished her sentence. “And Catherine can put them in the dishwasher.” Sarah seemed imminently satisfied with this plan. All I had to do was figure out how Catherine could actually do that. I just kept pressing forward.

“Well, let me get Catherine over here next to the dishwasher,” I said, knowing this would buy me a few seconds to keep thinking. Sarah happily ran the dishes under the stream of water and started piling them by the sink. “I’m a good dish-washer, aren’t I, Mom?” She continued to chatter away as I positioned Catherine’s chair by the dishwasher, still wondering what exactly was going to constitute “putting dishes in the dishwasher” and wondering if Sarah would accept it as Catherine doing her fair share.

I picked up a plate and held it to Catherine’s hand and talked about it feeling wet and cold and then put it in the spines of the dishwasher rack. “Good job, Catherine. You put the plate in the dishwasher. That’s a big help. Here comes the next one,” I said. I can actually remember how it felt because I cringed wondering, “Is Sarah going to buy any of this? Is she getting ready to say, ‘Mom, you’re actually the one doing it, not Catherine’?” I held my breath and simply kept pressing forward.

Sarah happily rinsed plates and bowls and knives and forks and let us know that she was working faster than we were and we needed to hurry up. Frankly, she was right! I started moving items into Catherine’s hand faster and soon we were sloshing some excess water around and laughing and working together to make sure all the dishes got loaded. Technically speaking, all Catherine was doing was touching each item before it went into the dishwasher. And that was enough.

It was enough simply to include her. Rather than have her sit in her chair back at the table, we simply moved her a few feet, let her touch the wet dishes, talked about the task at hand and got the job done. Moments earlier, I had been filled with doubt about how this would all work. I wondered what I could possibly do to make a difference and make the most of this opportunity. I feared an 8-year-old meltdown that would send our evening into a tailspin of frustration and whining – and not just from Sarah.

I simply kept moving forward searching for an answer. Rather than stall and ponder and critique and analyze, I took action. I let the path unfold before me, all the while watching and hoping that it would. And I learned a big lesson that I seem to need to learn over and over and over again.

When in doubt, step forward.

Pushing Past ‘Crazy Mom’

February 18, 2016 by Ellen Moore Leave a Comment

This simply blows my mind. It’s not what just happened that is so surprising, it’s also how I reacted that I found shocking. Fortunately, I was able to catch myself in the moment and bring it together.

I was talking with Catherine’s teacher about some aspects of her school day. The conversation turned toward eating. At school, they refer to her lunch experience as “tastings” and I send in various foods each day. In our prior county, they wouldn’t feed her at all. Period. It was one of the many sources of tension that eventually pushed us out of that county. At Delrey, they worked on therapeutic feeding. I was so grateful. Here in Howard County, we settled on “tastings.” I always thought that was a euphemism and figured it was better than nothing.

“What’s your goal for Catherine relating to this?” her teacher asked me on the phone.

I paused. I guess I paused just long enough because she continued… “I mean, do you want her to actually work toward a swallow or do you just want her to have different tastes? Do you think she’ll be able to eat on her own one day?”

There it was. One of those many questions people ask that rubs right up against what I desperately want and what any sane person will EVER think will actually happen. She asked the question in a very genuine way. It was unlike the accusations and doubt behind questions I’ve received from many others. She was genuinely filled with curiosity and trying to figure out how to help Catherine the best.

Part of me was shocked. Why wouldn’t I want her to eat, right? Why is this question even necessary? Why would I settle at “tastings”? And part of me was terrified. “Be careful, Ellen,” I thought. “This is how folks determine you dream too big for your daughter. This is how schools decide you’re unrealistic. This is how the people who ‘know better’ put me in a box labeled “Crazy Mom Who Is In Denial.” ” I took a deep breath and decided to press forward. To be real. To simply be myself.

“Well, let’s see….” I pressed forward carefully. “This is where I’ve been told in the past by Maryland School for the Blind that my expectations are too high. But here’s what I know for sure,” I said, ” If we don’t have the expectation, then I know for sure it will never happen because we will never try. So yes, though it may seem crazy now, I would like to think she can eat by mouth (and then I pulled back just a little) – maybe one of her meals each day – eventually.” Wow! I said it. Thinking back on it, I didn’t even sound that convicted myself. It was one of those sort-of kind-of statements that sounds so weak someone could blow it off with a whisper. If someone really pressed me and said, “Oh come on, do you really think that’s possible?” I would have a hard time answering yes. But oh how I long for it to be true.

I do know absolutely, positively, beyond a shadow of a doubt that if I don’t set the vision, folks don’t know where we’re going and we’ll for sure never get there. For sure. So, I was proud of me for saying it, even if I was nervous this was going to start a tense conversation just like it had in the past.

“OK. That’s great to know. Now I know where we’re headed and I can work toward that,” she said. She didn’t argue with me or make me feel like I was nuts. She simply took in the goal and said she’d start working toward it. I guess this is how a mustard seed of faith can start to move a mountain. Won’t it be cool to see this mountain move?

How Can You Have More?

February 12, 2016 by Ellen Moore Leave a Comment

Catherine and Sarah have been taking karate. I know! Crazy, right? Someone replied when they heard that, “Is there anything Catherine doesn’t do?” Ha! What a great question. And terrific irony. This is a story about something different though.

They take karate due to an extraordinary opportunity provided by Casey Cares and Okinawan Karate Dojo. This means the class is comprised of medically needy kids and their siblings. Sometimes, we have kids who just watch because they’re too sick to participate that week. Sometimes, they can’t make it. One has a prosthetic leg. Catherine is the only one in a wheelchair. Most of the kids don’t visibly show their sickliness. Many have cancer.

I’ve gotten to know one of the moms a bit because she has an 8-year-old daughter who became fast friends with Sarah. Her children, and there are five of them, all have an inherited genetic disorder that causes them all to have a lot of medical issues. They get it from her side of the DNA and from what I can tell, it’s a given that they’ll inherit the gene, making it about 100% chance she’ll walk a more difficult road than most moms. I commented to her last night, “You know, it’s pretty cool that you have continued having children even though you know they’re going to have so many medical issues.” I was kind of surprised I said it. Brian frequently tells me he’s surprised what comes out of my mouth and he thinks I don’t think enough before I speak. This surely would have been one of those times!

She replied so openly and with such joy about how we don’t know what we’ll get with any child and immediately pointed out that I had done the same when I had Sarah. True. We wound up talking about how no one knows what will happen when they decide to have children. Even if your kid is born totally “normal” (whatever that means), it’s possible they could become addicted to drugs, or develop cancer or have a baby at the age of 15. No one knows. And so any parent is walking this similar journey in actuality. It’s so nice to think about the many ways my road is “normal”. Believe it or not, it helps with the many, many steps of “ab-normality.” The conversation made me happy.

I woke up today thinking about our conversation and realized that having a child is perhaps one of the greatest lessons in faith that is possible for humans on the earth to experience. And then, if you choose to have another child, it extends that faith into hope. We either hope for something better – or different – or the same. We hope. As this circled around my brain this morning, I found myself repeating in my mind, “Faith, hope and love… and the greatest of these is love.” I realized that no matter how our children come to us, no matter how much faith and hope we have going into it, the reality is that with every addition to our family, love expands.

The Miracle of Meditation

February 4, 2016 by Ellen Moore Leave a Comment

When I went to Miraval in 2014, I had a session with a Native American healer. I told him about Catherine and he changed my paradigm forever. He told me there were Tibetan monks who sat in caves completely still and silent while they meditated for the world and all of humanity. They had people who served their every need, he explained. Someone fed them, bathed them, and made sure they used the bathroom and got cleaned up afterward. The monks didn’t speak and simply sat in stillness while they meditated every waking moment of every day. He asked me, “What if you daughter is doing that and you and your husband care for her like people care for those monks?” Suddenly, her inability to do much physically looked like an extraordinary purpose rather than an unfortunate state of being. I haven’t thought about that in a long time.

Tuesday night, I took Catherine with me to a meditation workshop – honestly because I wanted to go and I wasn’t sure what else she could do. I figured she’d just sit with me. We arrived a little late though fortunately the meditation hadn’t yet started. I felt disruptive as I pulled Catherine’s arms out of her jacket, never previously aware of how much rustling noise that made. Then, I had to turn off her feeding pump so it wouldn’t go off in the middle of the meditation. Beep! Everyone stared as it screeched when I turned it off. Quickly I responded, “I promise she’ll be totally quiet as soon as I get all this done. I’m so sorry.” Folks just stared. No one said, “It’s OK” to try to comfort me. The instructor seemed to be in a very zen state of “it is what it is.” As for everyone else – I have rarely felt so self-conscious. For a brief moment, I thought about leaving. Fortunately, I decided to stay.

Our guide asked us to share our name and share a word with the group that came to mind. She talked about how everyone who had showed up for the session mattered. I nearly burst into tears. I flashed back to Miraval and what the Shaman had told me about Catherine. I thought I’d use the word “matters” for Catherine, and then, our guide talked about how each of us present in the room was there because of a miracle. She had just witnessed a birth at home and was in awe of the miracle of birth. She inquisitively pondered, “What do you think would happen if we thought of every single person we meet as a miracle?” She asked us to think about that in terms of our boss, people who irritated us, people we’d fought with recently, the slow clerk in the store, the person in the car in front of us on their phone rather than accelerating when the light turned green. “Could we see everyone we encountered as a miracle?”

Immediately, I changed my mind for the word I’d share for Catherine. “This is my daughter, Catherine. Her word is miracle,” I proudly proclaimed to the group.

We went around the circle and the instructor eventually began guiding us through the meditation. Initially, I was unsure what would happen. Sarah had even asked me, “What if she hiccups, Mom?” I figured that would be like someone else sneezing. I wasn’t worried too much. The noise and disruptive entrance had bothered me a lot. As soon as I thought of Catherine as exactly what she is – a miracle – all that disappeared and I enjoyed the experience of meditating together.

She stayed awake. She kept her head turned to the right – her sign that she is responding, listening and engaged with whatever is going on around her. She even vocalized several times, and I didn’t mind one bit. Hey, it was more reasonable than the cell phone that went off as the instructor was guiding us to imagine we could exhale out our backs. I think Catherine liked the still energy that overcame the group and perhaps was trying to tell me so.

So, on this, her twelfth birthday, I think about my little miracle girl and wish her the happiest of days – especially if she’s meditating for all of humanity. And just in case she is meditating for you, choose today to see someone, perhaps everyone, as a miracle like she is and let that be your gift to her today.

Catherine, if you really are meditating for all of us, well then, I want to thank you.

Happy 12th Birthday Catherine! I love you.

The Sound of Snow

January 21, 2016 by Ellen Moore Leave a Comment

It snowed last night. Not the two feet we’re predicted to get this weekend – just enough to cover the roads and delay schools for a couple hours. Ever since Catherine was a baby, I always wondered what her experience of snow is – especially since she’s blind. Sure, I’ve made certain she knows what it feels like and how it melts and that you can have fun sledding in it. I even took her skiing so she could know what that’s like. I’ve always thought she really likes the snow. What really captivates my imagination, though, is how it sounds.

On first consideration, you might think, “It doesn’t make a sound.” There is a part of that thought that is true. It certainly falls silently. Yet, in this world where we never hear silence, isn’t that a sound? I think a blind person must be so attuned to sound that the absence of it – silence – is a welcome sound. It’s sort of like when we close our eyes to shut out the world. You can’t close your ears, so snow days bring this beautiful silence, I think, that perhaps lets a blind person shut out some of the world for just a moment.

Have you ever stopped to realize how different the world sounds when it’s snowed? There is less traffic and less activity so that creates less noise. The snow absorbs some of the ambient sounds and that reduces the overall noise level in the world as well. I think the softening of the sounds of the world is magical.

And then, it crunches. If you get enough of it to make a deep footprint, you can hear a reverberating squeak every time you take a step. I can’t think of anything that sounds like it. Sometimes, after the sun comes out and melts a little of the surface that refreezes later in the day, you get a thin icy layer that creates a tremendous crunch when you step through it as if you’re breaking into a hard-shelled candy that reveals a delicious smooth center.

Even when you’re inside, it’s possible to tell it snowed because it sounds different. I always try to tell Catherine when it snows so she can associate the different sound with the cold melty stuff and the slippery fun we get to have. I also want her to know the way the world sounds on those days is special, too. We have some huge fields next to our home. I’m already thinking of building snow tunnels and maybe even an igloo if it really snows two feet on Saturday. And I’ll stop several times to listen to the sounds – or rather the absence of them.

Why I'm Not Praying

December 10, 2015 by Ellen Moore Leave a Comment

I don’t always know what I’m going to write. I’ve said that before. Today, I suppose I need to write a follow up to my prior post. So many reached out to make sure I’m OK. Yes, I’m OK. Someone said, “You must be in a lot of pain.” No. Not really. It’s more an awareness of reality. It feels a little confusing. I wouldn’t describe it as pain. My favorite came from a text I got where the person thanked me. She wrote, “You are an incredibly brave momma. You really have no idea the type of role model you are to share your soul in such a raw way.”

That’s why I did it. That’s exactly why I pushed through the difficulty of the confession because I think people need to read the rawness of what it’s like to have a child with severe disabilities. What it’s like to hope beyond hope and then to realize you’re not even asking for the things you really hope in the deepest part of your soul will happen. I want people to know the good and the difficult. And trust me, there are extremes of both!

So allow me “part 2” of that post. The why.

I wonder what she’d want to say.

When I realized I wasn’t praying for Catherine, you have to understand what I meant by that. I actually pray with her every night – well, unless she’s asleep when I get home. Sometimes, I even go in and pray with her while she sleeps though. We thank God for five things. This has been my practice since she was born and I’m eternally grateful to the friend who suggested the idea. One day, the best she and I could come up with on our thankful list was that Catherine was warm and dry in her incubator in the NICU on a cold, snowy, gross day shortly after she was born. So, I still do that. And I pray for God’s blessings on her. And I pray for her general well-being. I had stopped praying for anything specific though. And that’s the part that hit me hard.

I want more than anything for her to be able to communicate in some way that others will understand. I want her relatives to have a relationship with her and that seems to require some form of communication. I wasn’t asking God for that because I was – no scratch that – I AM afraid that if it doesn’t happen, it will mean I don’t have enough faith. Somehow I think I’ve twisted things.

God says, “If you have faith as a mustard seed… nothing will be impossible.” If I pray for Catherine to communicate and she doesn’t, then I must not have that much faith. I think about the people who came to see Jesus from all over the holy land believing if they only touched his garments, they’d be healed of their afflictions. There are lots of accounts of healing blind people, dumb (unable to talk) people, people with seizures. Catherine has all of these things. If Jesus were walking around Maple Lawn, would I go touch him on the pant leg (I don’t think he’d be wearing robes!) with the belief he’d heal Catherine?

If I’m honest, I’m not sure I would. First, I wouldn’t think I was worthy. Why heal my daughter rather than someone else’s? Plus, there is a big part of me that thinks I’ve been given Catherine’s life to shepherd so others have a beacon of hope and inspiration – that kind of makes this part of what I’m going through that much tougher. Second, if I touched him and she wasn’t healed, would that say something about my faith? That it wasn’t enough. I’ve always believed God graced me with a good amount of faith. It’s a big reason I’m able to get through many of the challenges we face. If my faith got rocked by asking and not receiving, I really don’t think I could recover from that.

Sure, I know the answer to my prayer might be “No.” And maybe I’m not praying right. I’ve certainly not been fasting and that’s part of this story. I’m not sure if I fast that represents any difference in my faith though. So, I’ve not found a story where the faith was there and the answer was No. Not in the Gospels anyway. Maybe one of you knows a time when there was enough faith and the answer was no. I’d like to read that one.

Do I Dare Write What's On My Mind?

November 19, 2015 by Ellen Moore Leave a Comment

First of all, the agency got us night coverage and the nurses are showing up and taking good care of Catherine! Our prayers were answered. Whew!

In the light of that, it’s even harder to write what I’ve realized. Funny. Usually my fingers fly across the keyboard as the thoughts roll out of my head through my fingers to the keys which enable words to appear on the screen, and then I post for you to read. Today, as I get ready to write what I want to write – no, that’s not accurate – I don’t want to write it, I think I NEED to write it. Today, my fingers literally stop. Then I decide to change the subject in my head and they move again. Then I think about writing what needs to come out and they simple stop again.

How do I write it? How do I let the world know what I’ve realized with a blinding flash of horror? It’s actually not the world that concerns me. It’s the few people in the world who know me personally and read this blog. Those are the ones that stop my hands, especially those who know me well.

One of the things that has happened since I’ve committed more to writing is that I’ve become more aware of the audience. Of you. I sometimes think of the individuals who I know are reading because they tell me personally about their reaction to what I’ve written. And that’s created a different dynamic. I used to write for me. Now, I find myself writing very much aware of my audience. That’s both good… and hard.

I recently met with an author, Al DeCesaris, who graciously offered to spend time with me talking about how he self-published a book. He’s a really amazing guy who devotes his life to raising funds and awareness for his niece who is affected by Sturge-Weber Syndrome. I told him I wish he’d consider writing his next book about the family dynamic when a kid has disabilities. It’s tough. And that’s all I’ll write about that topic for now because I know they read my blog, and I’m not willing to go there now. Don’t even ask.

I am willing to try to share this big realization though. I just need to figure out how to get it out of my head – my heart and soul really – to my fingers through the keyboard , to the screen and onto my blog.

Dare I do it?

One of the things Al suggested to me was to read Stephen King’s book, On Writing. It is absolutely fantastic. I devoured it! He writes about how the first draft is for the author and the rewrite is for the audience. That’s probably how I shifted from writing for myself to becoming aware of my audience. And as that awareness has grown, it makes it harder for me to write what I feel I need to put out there.

Of course, now that I’ve written all the words you’ve been reading without actually getting to the confession, the confession will probably be a let-down to you, the reader. That’s unfortunate. It’s still a big confession to me even if all this writing in the middle of it has built it up to you so much that when I actually write the words, they will be small in your mind as you receive them.

Trust me – they’re huge to me. And scary. And evidence I’m not the mom a lot of people think I am. So it’s like a double confession – the actual act, which in this case is really an omission of action, and the reality that you’ll see that I’m not the mom you may think I am. And then there is a third layer, too. For this confession has to do with my faith. Again – something that people tell me they admire about me. Yikes! So, the real pain of the confession is that I’ll show you someone who doesn’t live up to your expectations. Well, I’m simply going to let that go.

I was taught by my abundantly creative mom what it really means to have faith as a mustard seed. She had the kids in our Sunday School program put a mustard seed in a shrinky dink and melt it into a necklace we could wear around our necks as a reminder that we only needed this much faith. Have you ever looked at a mustard seed? Go to the spice aisle and do it. They’re small, yes. They’re bigger than you think, though! And that leads me to the fourth layer of this confession. I’m not sure I have that much faith. Because if I did, I don’t think I would have stopped writing what I’m trying to tell you.

So there. I’ve confessed all the layers and shown you my underbelly and fear and vulnerability. Well, OK, not really because I haven’t written the words. I’ve written a bunch of words related to this confession. The actual words of the confession haven’t worked onto the keyboard yet. I can tell they’re trying to come out though because my hands are slowing down to type this part. They realize I’ve danced around the confession about as much as I probably can and still have you continue to read.

Like I said, it’s not going to seem so big to you after all this build-up. And maybe that should make it easier for me to write it. Stop. My hands just stopped moving. Clearly it’s not any easier for me to type it. But sometimes you just have to jump – having faith that the net will appear. So, I guess if I write it, maybe that proves I have at least that much faith. Maybe that’s not so bad.

So, here goes…

Stop.

Really? Again? Come on hands. Stretch. Breathe. Just put it out there. It’s not that big of a deal. Just type what your brain has realized.

Oh, right. It’s more than your brain. It’s your heart and soul. That’s true. I think a confession from the soul is probably more authentic anyway. So, just type it. The world will not end. I promise.

Stop.

Geez. Maybe you can think about it like this. Maybe something great will happen if you just put it out there. Maybe someone will pick up the weight and free your soul. Did you ever think about that? Maybe… So push through the stop. Do those things you tell other people to do. Do that thing that scares you. Just keep typing and let it come out without any thought. Your fingers are flying now, let them keep flying.

OK! Here goes…

I’m not praying for Catherine.

Stop.