Moments Archives - Just Wait and See

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.

A New Start

January 1, 2016 by Ellen Moore Leave a Comment

I don’t know when it started. One New Year’s Day I got a bug up my you-know-what and I wanted to go to the beach. I hopped online to find the closest beach to us. It had a really unfortunate name – Slaughter Beach. It was only 90 mins away though so it was perfect!

We had no idea what we would find as I packed a picnic and listened to Brian tell me how cold it would be. Yep. That’s what long underwear is for! We bundled up the kids and headed east.

Since that day, this has become our New Year’s Day tradition followed by collards and black eyed peas. You can keep your ball drop in Times Square at midnight. I much prefer looking out across the ocean and thinking about what has happened over the past year and all the possibility that exists as we head into a new one.

So greetings from Slaughter Beach with the very best wishes for a happy and prosperous 2016. Let’s all make it a great year!

First Solo Step

October 29, 2015 by Ellen Moore Leave a Comment

I have racked my brain since Tuesday about how to write about what happened that day. Sometimes the image really is worth a thousand words. So take a look at this and realize this is THE FIRST TIME IN ELEVEN YEARS that Catherine has taken a step without any facilitation of her body and without any guidance on her gait trainer. This is 100% all Catherine taking her very first solo step!!!

If you want to watch the videos leading up to this one, click YouTube Catherine Walking 10.27.15. You’ll be amazed how fast she is with a teeny tiny bit of PT help.

Fly Catherine Fly!!

Making Art – Not Just Looking at It

August 17, 2015 by Ellen Moore Leave a Comment

I’ve researched the top 10 art museums for kids as well as the Baltimore Museum of Art. None of them are creating the environment we experienced at two galleries in Copenhagen. While USA’s museums have scavenger hunts and books and games to suggest related to the art, I found the activities created in Copenhagen to be inspired. In an art museum, what better way to create curiosity about art than to enable kids to make their own art?

The National Gallery in Copenhagen attracted me by highlighting it’s children’s drawing room. Sarah was immediately intrigued and wanted to go. While there wasn’t much for Catherine to do, sometimes a sister simply has to go along. Sarah loved it so much we went back another day and she drew some more. I loved reading what the museum had to say about drawing.

Sarah chose a statue of a little girl carrying kittens to draw. Brian and Catherine went off to explore. I simply watched, captivated, as i watched my 7-year-old daughter hone her sense of observation.

They also had a children’s area where kids could make sculpture with hot glue guns, paint at an easel, or draw some more. Sarah worked hard on her painting of an airplane and her sculpture of a tree house that had a rope swing and a zip line.

In fact, she felt like she’d worked so hard on them, we had to figure out a way to get them back home with us. Fortunately, a mailing tube at the train station was perfect!

At Louisiana Museum of Modern Art, we found an entire Children’s wing. They approached the kids art program a little differently, which I really liked. Instead of just providing materials and hoping to spark creativity, they tied projects into the exhibits in the museum, so the kids would hopefully understand and appreciate the exhibits more. Making things out of sticks and paper like they do in structures in Africa, gave Sarah a greater interest in the Africa exhibit. And Catherine preferred the 3D opportunities in this museum as well.

The inspiration. Architects are building these structures in Africa to create feelings of community.

Sarah’s has the yellow cone top and Catherine’s is just under it to the right on a blue base.

Peter Doig works with collage so the kids made a collage to add to this wall in the museum.

The sculpture garden inspired these charms. Sarah made a cat and Catherine and I made a 2 tailed critter.

A combination of string and a brush enabled me to make this wheelchair with wings moving toward the light. I didn’t even realize the symbolism until I completed it.

A combination of string and a brush enabled me to make this wheelchair with wings moving toward the light. I didn’t even realize the symbolism until I completed it.

I’d love to know where her imagination was taking her. This was another African structure designed to inspire community.

Having just been dismissed from my employment, I found this to speak right to my soul.

One of Sarah’s two favorite pieces. The other is the one above this one.

And the final example of making art was watching Catherine compose music with the camera from this computer. When it “saw” her move, it played music and she responded and seemed to know what she was doing immediately. Art comes in many forms and is one of the best ways to reach people with disabilities in my opinion.

Happy Mother's Day

May 10, 2015 by Ellen Moore Leave a Comment

I swear if I had known how much I would love being a Mom, I would have had kids much sooner and had several more of them. If you know anything about me though, this is a statement that is rather shocking.

When Brian and I got engaged, I remember telling him, “You need to know something about me. I don’t want kids.” I was casually hopping along some concrete “pods” like they were lily pads after a dinner one warm night as he walked alongside me.

“You’ll change your mind,” he said. And he proceeded to tell me it was nature’s way to make sure our species continued. Having been raised by an ERA-supporting Mom, I was actually insulted and reiterated my point that I did not, in fact, want kids and he better accept it if we were going to get married. I guessed he did because he never brought it up again and we still got married.

Two years later, I remember him standing in the living room of our new house. “I’m 30 years old, Ellen, when are we going to have kids?” I simply reminded him of that night on the lily pads a couple years earlier. Though frustrated I’m sure, he didn’t bring it up again and we built a marriage over the years that many of my friends tell me they envy.

Several years later with a major move to Delaware under our belts, I found myself at a photo shoot for GORE-TEX PacLite in California. We had hired a major photographer, Jim Erickson and he was working on a book simply titled, Mother. At the end of our shoot, a young mom and her 2- or 3-year-old son started spinning and; though Jim had put his camera away, he unpacked it quickly and began to “dance” with them as only a pro photographer could while he watched for a shot in the magic light of sunset. The mom appeared filled with joy and her son laughed and laughed as he spun round and round in her arms. That was it. That was the moment I realized I wanted to be a mom.

I never really wanted to “have kids.” I realized what I wanted was to be a mom. I wanted to know that joy and love that seemed in that one moment to completely intoxicating and unlike anything I had experienced in my life. Nearly ten years later, I finally got to become a Mom. It didn’t happen under the best circumstances since Catherine arrived way too early. She decided it was time for me to be a Mom, though, and we welcomed her into the world on a sliver of a moonbeam, weighing next to nothing. Though it was beyond stressful, I loved being a Mom to her.

I still love being a Mom – even if my steps into motherhood were harder than many. My second try was also difficult; I spent 16 weeks lying in bed trying to keep Sarah from coming too early herself. And though that was hard, it gave me the chance to have my daughter run in to greet me this morning and simply stare into my eyes with her bright, loving sparkling brown eyes. She didn’t even have to say “Happy Mother’s Day.” It simply was.

Eclipsing the Eclipse

October 14, 2014 by Ellen Moore Leave a Comment

My mom takes great pride that she got my brother and me up to watch several spectacular events in history. Apparently, I was up for the moon landing in 1969. I was three and don’t remember a bit of it. I saw it though, I’m told. And she got us up to see Princess Di get married. I have vague recollection of her dress and the music and watching it through sleepy eyes clear “across the pond” I would later learn to say. So it’s not surprising that last week, she made sure I knew about the Eclipse. She told me about the selenelion and how if I could find a good spot, we might be able to see the moon on the horizon as the sun rose to greet the day – an especially rare event.

“You’ll have to get up early, Ellen,” she said. “You remember I got you up for the moon landing and Lady Di’s wedding. I thought you might want to get up with your kids for this.”

“Uh… yeah, Mom. What time?”

“Well, it’s like 5 AM or something.”

“Yeah, right,” I thought. And then went about my day.

I loved astronomy at Carolina, and I really enjoy looking at the stars. I’ve secretly always wanted a telescope, but it’s so impractical because we live in a brightly lit city and I know myself and my life well enough to know I’d likely never take the time to haul it off to some dark place and really look at the stars. But maybe one day I will, I frequently think, so it sort of didn’t surprise me to find myself googling “eclipse time” before going to bed last Tuesday night.

“Are you really going to get up at 5 AM?” my husband asked me.

“I don’t know, but I have to know what time it is to even consider it, so I’m just going to figure it out and then see what happens,” I replied. I know he thought I was nuts.

I still didn’t know what I was going to do as I got ready for bed when I remembered a quote that said, “Nobody ever wished on their deathbed that they’d slept longer.” I set my alarm for 5 AM.

When my alarm beeped the next morning, I found it actually easy to get out of bed. My feet were on the floor at 5:05 AM and like a little kid at Christmas, I rushed outside to see if the sky was clear enough to see the moon at all. No sense waking anyone up yet if it wasn’t, I reasoned.

It shone brighter than a flashlight pointed directly in your eyes. I could see the left edge of it covered in a bit of a shadow.

The early signs of the Eclipse thanks to an Iphone.

“It’s happening!” I thought. And I came back inside to see if I could see it out one of our windows. When I saw that I could, I got even more excited because I wouldn’t have to subject anyone to the cold I’d bundled against in the chill of early October. I thought about my plan and literally ran back and forth in the still quiet of the darkness trying to figure out my next steps and when exactly I should wake the kids. Then it hit me.

I became acutely aware that no matter what I tried to do or how I tried to explain it, Catherine could not see the eclipse. By definition, it is something to behold with the EYES. It’s why we have telescopes so we can SEE teeny tiny specs millions of light-years away. I could think of no sensory way to convey the energy and excitement of a total eclipse with her. Even if I did it with the cliche of foam balls, the energy would be lacking. I took a deep breath realizing a little more deeply what I actually already know. I hate those moments.

I woke up Sarah and scooped her up to look at it through the window like sheer magic. We whispered quietly and decided we’d get a blanket and go watch it outside for a bit. It was our little secret. Like me, she awoke with excitement and curiosity. The more we watched, the more intrigued she became and, when the moon fell below the tops of the townhouses in our new neighborhood, we decided to move to yet another spot for better viewing.

Sarah’s excitement as the sun starts to rise behind us.

We sat in the stillness, cuddled together in the blanket braced against the chill of the air. We talked about science and why the moon turns “blood red” and how special it was to be outside alone together. And thankfully, the joy of holding Sarah and watching this stellar event in the stillness of the early morning dawn eclipsed the frustration I’d felt only moments earlier.

Pure Joy and worth every second of getting up so early.

Spontaneity

March 5, 2014 by Ellen Moore Leave a Comment

I keep a bag of toiletries packed so I can travel quickly. I have always told myself it’s so I can head out on business trips at a moment’s notice. Or maybe I would take it somewhere fun without any planning. For awhile in my life that was true. I would come in from a business trip on a Tuesday, for example, and leave to somewhere new on Thursday. No sense packing and re-packing that bag, right?

Truth is that I haven’t actually had to travel that much in the past couple of years. The bag stays packed though. I guess because I am always hoping I will go somewhere quickly – on a moment’s notice – with the spontaneity I had long ago. I never really thought that I keep it packed in case I have to go to the ER. Until today.

Catherine has been having some symptoms that in isolation wouldn’t even make me turn twice. In aggregate they increasingly concerned me. I had been in touch with the pediatrician several times, of course. So today when school was on a delay I thought her doctor might want to see her.

“Uh,” the nurse started after consulting with the doc and calling me back. “This isn’t going to be quite what you expected.” I thought for a quick second, “It never is,” and I stuffed my cynic back in the box. “She wants you to go to the ER at either Hopkins or Maryland.” Ugh. Even when you have a kid with as much complexity as Catherine, I am gonna tell ya – those words rock your soul and the whole world stops spinning for a moment. Then it starts spinning really fast. It’s in that spinning when I realized I would need to pack a bag.

I quickly grabbed stuff and threw it on the floor so I could pack it in a suitcase or something, and then I grabbed the toiletry bag. The irony of the spontaneous trip I ever-hoped would happen hit me as I zipped it closed after tucking my brush inside the bag. My spontaneous trips were to the ER now. Everything else requires significant planning.

OK. I guess I will have to learn to accept that.

But I will leave my toiletry bag packed – just in case.

PS: Catherine came home after several tests and she is just fine! No toiletries even needed on this trip.

Sleep and Breathe

August 25, 2013 by Ellen Moore Leave a Comment

Catherine has proven the theory of the infamous Dr Levenbrown. It is, in fact, possible to sleep and breathe at the same time! Dr L made this astute statement during rounds when they discussed extubating yesterday. Catherine had a good night and remained extubated and breathing on her own. So Dr L is busy preparing his much-anticipated paper to report the finding.

They are taking out the arterial line today which means they believe she is out of the woods on her blood pressure issues. She still has her central line and that is typically one of the last things to come out before we leave. They plan to stop Lasix which means she has eliminated enough fluids that she can probably handle it on her own now. She needed a couple of hits of morphine last night but who can blame her? Otherwise she is only on Tylenol for pain. She is a champ!

She’s also tolerating full feeds in her gut just like she does at home so she should start coming back to her own with some calories on board.

When I walked in this morning she had a beautiful pillowcase and matching new Linus Project Blanket. The care of people who don’t even know her astounds me. And Sarah finally got to sit in bed with her for a moment. All is returning to right in the world.

When you think about it, if we can all just remember to sleep and breathe that really will get us through most things. Thankfully Catherine seems to be back on track for both. And always an example to me.

Keep flying Butterfly!

The Question

November 21, 2012 by Ellen Moore Leave a Comment

“Mommy, how did Catherine get born early?”

Sarah’s little voice pierced the darkness and drifted toward my mind as we drove home in the dark of night. It’s the one I’d wondered about. The one I didn’t know how I’d answer. Most parents may wonder about the “Where did I come from?” question. I’m ready for that one and the whole sex talk to go with it. This one was different. How could I answer this particular question when I didn’t even really know the answer myself?

“Well… She just came early,” I paused. “God just had her come that way.”

It was the best I could do, and I didn’t feel like I did a very good job with it. I drove in silence for a moment, wondering what else I could have said – or could still say. How could I explain the complexities of pre-term labor to a four-year-old? How could I explain spiking a fever and running and infection? How could I explain placenta abruption and my life and Catherine’s life being in jeopardy? The silence and darkness grew as I began to question whether God actually did do that or allowed it to happen or whether it was just random having nothing to do with God at all.

In a barely audible whisper, I heard her tiny voice from the backseat, and I wasn’t sure I could make out the words.

“What did you say?” I asked her. I thought I had heard correctly, but I wanted to be sure.

“Mom!” She yelled in exasperation just like I imagine she will when she’s sixteen. “I’m talking to God!”

“OK.” And then I could hear her for sure.

“God, is that true?” she barely uttered aloud.

My faith that has been hiding under a rock poked its little head out to remind me that yes, he was still there.

And I realized I hoped God answered her, “Yes.”

Homecoming

June 28, 2012 by Ellen Moore Leave a Comment

Apologies for not posting this earlier. It should have been posted on 6.4.12. We were heading out for vacation and packing took priority! Great vacation by the way.

Every morning during the school year, I make Catherine’s food for school. I carefully pour Ketogenic formula into the bottles I pumped breast milk into for Catherine for fifteen months. We’d add a nipple to the bottle and she’d suck away working on the “suck-swallow-breathe” pattern that enabled her to take the liquid gold from a bottle and eventually come home from the hospital. I remember being so proud that she could take a bottle.

The irony that we use the same bottles for her seizure diet formula isn’t lost on me. We eventually got that horrible diagnosis “Failure to Thrive” and we had to put in the g-tube. So, eight years later, I pour formula into the same bottles she sucked breastmilk from so the nurse can squirt it into her belly via the Mickey button implanted just below her ribs – “a great location” the doctor said just after the surgery.

I also carefully measure 30 cc, which is an ounce, of baby food into two of the smaller breast milk bottles. They look more like test tubes and are long and skinny. I put a sweet option into one and a savory option into the other tube, so Catherine has a choice during the school day. The therapists feed her every day at school, and she likes pear/pineapple and sweet potatoes a lot! About the only thing she doesn’t like is bananas. Have you ever eaten baby food bananas? I don’t blame her!

I put lids on all three bottles, careful not to spill the formula, which is crazy expensive and would require us to make a day’s worth of recipe all over again. Since we only get a prescribed amount in each shipment, we can’t afford to spill any, so I’m extra careful handling the bottle with the formula. As soon as it’s capped, I actually relax a bit.

School requires me to label the food – the outside of her lunch bag and each bottle separately. I label it on a piece of Scotch blue painter’s tape with her name and the type of food and the date. I actually wonder why I have to do this every day with the formula because it’s exactly the same, and she’s the only kid on the diet at the school, so it seems unnecessary to me. The school requires it, so I comply. It’s sort of become a bit of a meditative routine for me at this point anyway. And I think about Catherine and am happy to be able to do something for her each day – even if it’s as simple as making her lunch. All across America, moms are up early making lunch for their kids. It’s normalizing for me.

And then it hits me, as I write the date on the blue label this time: 6.4.12. Catherine’s Coming Home Day.

No else thinks about this date. Others remember her birthday. A few even remember approximately when she was supposed to be born in May. No one thinks about the day that was frankly the most miraculous of all – the day we brought her home from the NICU, 121 days after she was born. It was four months to the day after my doctor pulled her from my body and we started to hear the refrain, “We’ll just have to wait and see.” I kind of like it that way. No expectations. Just a quiet hush when we think about it. That moment feels like our special family secret, in a good way. Like when I was pregnant during the first trimester and only Brian and I knew.

When Brian woke up, I mentioned it to him, “Today is the day Catherine came home.” He looked me in the eye. We just gazed at each other. And without any words, we both knew what that meant to us.