Just Wait and See

A blog about hope, despite the disabilities.

  • Home
  • About Us
  • Best Of

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.

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.

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.

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

Filed Under: Best Of, Moments Tagged With: outdoors

Sarah Loves the Outdoors

November 3, 2013 by Ellen Moore Leave a Comment

“I’m so stinkin’ proud of her I just can’t stand it!” I said as I ran over to Brian and hugged him, jumping up and down in front of some colleagues like a five-year-old.

The day prior, Catherine and I stumbled upon Sarah at the low ropes course at Nemacolin Woodlands Resort when we were out for a walk. She did all the elements, including the kids’ zip line, twice. She loved every part of it and begged for more.  She loved it so much that she convinced the Kids Club director to take her to the adult zip line the next morning, and when I picked her up, the director told me she zipped without a moment’s hesitation. That should have been enough. The event that provoked my sheer elation topped even that.

Sunday afternoon, Sarah nearly drove me crazy asking to climb the rock wall. It was quite high, and I wondered if she’d really climb high enough to be worth it. Knowing how much she’d loved the ropes course and zip line earlier, I acquiesced. After begging us throughout lunch, she just harnessed up, buckled on her helmet and then told the belayer, “Climbing” – the tell-tale sign that a climber is taking her feet off the ground, making the belayer responsible for safety. She had no fear.

I felt giddy. Not only did my kid love climbing; she’s good at it. She climbed nearly thirty feet, past the height of the older boy who had gone before her, and then  her hands gave out in the cold. I immediately texted a photo to the only person I know at this stage in my life who climbs. “Look at my kid!” I wrote. I don’t remember feeling so excited in a long time. And in the core of my being, after camping the week prior, I knew beyond a shadow of a doubt at least one thing that makes me unequivocally happy. See if you don’t smile and feel a little tinge of happiness too when looking at these photos.

Image

A girl after my own heart on the ropes course.

 

Image

So serious while crossing the tires.

 

Image

Not even afraid a little bit.

 

Image

I can do it, Mama! I promise.

 

Image

Like Mom, like daughter.

 

Image

Yep, I’m gonna climb that all the way to the top.

 

Image

Here I go! Gotta love the smiley face hand hold. 🙂

Image

Perfect form! She’s even looking down at her feet for the next move. Great job Sarah!

 

Image

Look at her go.

 

Image

And go…

 

Image

Almost to the top when her hands got cold and she rappelled down.
So proud of you, Sarah!

 

Filed Under: Normal Tagged With: Happiness, Nemacolin, outdoors, Rock climbing, Sarah

Trifecta of Goodness

November 3, 2013 by Ellen Moore Leave a Comment

The past sixty days have been hard; I’m not going to lie. Perhaps the fact that I’ve not written much is evidence of that. Shutting down a business isn’t easy or fun, so I’m especially thankful for the extra-good blessings as Catherine continues to recover. In a nutshell, she’s given us three spectacular gifts over the past month. And each one has been sweeter than the prior. She took her first steps after surgery, we went camping for the first time since Sarah joined our little family, and – oh yeah – Catherine started to sing. Yes, I’m serious.

Think about this for just a minute. Catherine’s second surgery was 8/21/13. And remember that was the second time she was cut from tip to tail as they exposed her spine in a surgery described akin to quadruple bypass open-heart surgery in an adult. So, imagine my sheer joy in watching Catherine take her first steps only 7 weeks after she survived that risky day in the OR. (In case you missed it, you can click on the green link in the prior sentence to watch). And then take a look here – this is a close-up video of the quality of her steps. You’ll see precision in the heel-toe placement of her steps. Even our therapist was impressed. And in case you don’t want to watch the video, I’ll share the below images so you can see how nicely she stands in her gait trainer and how great she looks overall. No doubt, I am incredibly grateful. But keep reading…

Image

Catherine standing tall 7 weeks post-op.

 

Image

Look how straight that back is!

 

Image

Holding her head up on her own!

 

Next, we went camping. If you know even one thing about me, it’s that I love the outdoors. When Catherine was born, I sold my soul to the Devil and we camped in a camper rather than a tent just so we could accommodate Catherine AND I could get outside. Since Sarah was born, though, we’ve only slept one night outdoors as a family and that was in our backyard – even though we got a family tent years ago. I had no idea how much I missed it until I went. Thanks to an amazing friend who somehow knew I was going to need this more than anything I could imagine, we went to western Maryland and spent two nights in the pouring rain and had a blast! My entire being came back to life, and I came back with a restored soul. Seriously – it was that good for me. Just take a look at some of these photos. I actually asked for the one of me cooking to be taken because I wanted to remember that feeling forever.

Image

Image

Catherine has the best seat in the campground for a story.

 

Image

The tent leaked and we stayed dry anyway thanks to Brian who provided creative engineering with tarps and Gore-tex over the leaking parts. Thankfully it wasn’t too cold!

 

Image

Sheer happiness! Pancakes and bacon, anyone?

 

And then, as if the month couldn’t get any better, we got to visit with Dr. Jan Van Dijk, the world’s authority on reaching deafblind children. He was even knighted by the Queen of the Netherlands for his work and he received the Anne Sullivan award (you do know who she is don’t you?) I called him the Special Needs Whisperer, and he came all the way from the Netherlands to see Catherine. Catherine can hear just fine, fortunately. She’s registered with Maryland’s Deaf Blind Connection because of the difficulty reaching her given her extreme challenges with communication. And Dr. Van Dijk – I’ll just call it miraculously – got her to sing!

I have to confess that watching him, I was uncertain. I sat with the eyes of our home-school administration wondering what they would think about him and anything he’d say. I put on my most scientific hat and watched only for evidence. I stuffed hope down deep inside me and just waited for any evidence to appear – or not.

Repeatedly, he asked her yes/no questions and got her to raise her right arm for yes in appropriate ways. I wanted to believe this was purposeful. I really did. It was hard to deny the frequency and consistency of her response. My scientist remained skeptical, though. I even asked him, “How do we know this is purposeful?” His reply was simple. “It looks to be based on observation consistent enough that I believe it is.” He paused as if letting his accent sink in a bit. “Do you?” he asked. “Yes,” I had to confess, wondering what Brian thought of it all.

He asked us about her MRI and what it looked like. He mapped what he observed her doing with what we told him about her brain. “It’s all there, but it’s squished you tell me,” he kept repeating. ‘Squished’ is exactly what it looks like on the MRI according to her neurosurgeon and we had explained that as I drew a picture of her brain as I’ve seen it from her MRI. “Well then, we must try music. We don’t know how, but music is the way to reach her.” I looked at Brian acknowledging that Dr. Jallo had said the same thing when Catherine was just a baby.

He went to get his Ipad,  found some classical music, and he started to play the music on her hand. As the music built, he tapped her hand more forcefully. When the music lighted, he tapped her hand more lightly – like a feather stroke against her skin. After a few minutes of this as I was watching wondering what, if anything, would happen, she lifted a finger and uttered “aaahhh.” Dr. Van Dijk’s response? “Wow!” And I captured the moment on video.

“Oh, you want to sing, Catherine?” He proceeded to tell her the story of a deaf girl everyone said couldn’t sing who started to sing. Interspersed in the story, he listened for her to sing more. As time went by, he began repeating her sound, letting her lead. This went on for some time – so long that my skeptical scientist eventually retreated. My “mom” came back out, and I wept. Not the tears that sometimes come when it’s obvious I’m expected to cry. But tears that had been stifled because I’d started to believe we’d never reach her and be able to communicate – tears that had hidden underneath lost hope. I have to confess thinking about it weeks later. My little girl can sing. Take a look – or rather listen – and see if you agree.

Filed Under: Hope Tagged With: Camping, disability, hope, outdoors, sing, van Dijk

Dream Catchers – Catching some dreams for us

June 2, 2013 by Ellen Moore Leave a Comment

Catherine joined a softball team!

What? How is that possible? Well, take a look at some of these photos and see how cool it is. The best part is the whole family gets to play together – well, when I’m not behind the lens 🙂

ImageImageImage

ImageImage

Also, remember that we’ve got only one week left to raise money for Bello Machre in our walk on June 8. If you want to give (half the money you give goes DIRECTLY TO CATHERINE!) – just click on this link below https://bellomachre.ejoinme.org/26526

Thanks all!

Filed Under: Normal Tagged With: cerebral palsy, disability, disabled kids, kids, outdoors, softball

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…

Subscribe to the Blog

Get all my posts right to your inbox and never lose one again!

Let’s connect

  • Email
  • Facebook
  • LinkedIn
  • Pinterest
  • Twitter
  • YouTube
  • Three Of Us Together

Categories

  • Acceptance – or Not (13)
  • Best Of (40)
  • Doubt (10)
  • Faith (6)
  • Gratitude (11)
  • Hope (31)
  • Love (4)
  • Making a Difference (4)
  • Matter of Fact (41)
  • Moments (21)
  • Normal (11)
  • Perspective (17)
  • Uncategorized (10)

Search by Dates

Never Miss a Post!

Sign up to gets posts to your inbox. I will never sell your email - don't even know how!

Thanks a bunch! Let me know if there are topics you'd like to see me cover.

Search this blog

Copyright © 2021 · by Shay Bocks · Built on the Genesis Framework · Powered by WordPress