Just Wait and See

A blog about hope, despite the disabilities.

  • Home
  • About Us
  • Best Of

The Present of Being Present

September 23, 2016 by Ellen Moore 2 Comments

img_0142

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.

Filed Under: Best Of, Moments Tagged With: meditation, Sarah, sibling, sister

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!IMG_3097

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.

Filed Under: Best Of, Making a Difference Tagged With: Sarah, siblings, Sisters

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

For Sarah

August 21, 2013 by Ellen Moore Leave a Comment

Your sister is in the very best hands in the world – literally. I thought you would like to see a photo of them wheeling her toward the OR. They took her in at 11:01 and we will let you know when she is out with a super straight spine. Everyone here thinks you are amazing and the best sister in the world to Catherine. Couldn’t agree more Little Bear! We love you!!!!

20130821-111350.jpg

20130821-111412.jpg

Filed Under: Matter of Fact Tagged With: Sarah, surgery

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.”

 

Filed Under: Best Of, Moments Tagged With: cerebral palsy, daughters, disability, faith, pre-term labor, Sarah, Sisters

My Very Best Moment

March 22, 2012 by Ellen Moore Leave a Comment

I have been telling the following story to anyone who will listen. I tell it for two reasons. First, I want to remember it forever, and I hope that by telling it over and over again, I will brand it into my brain for eternity. Second, it’s a really great story that I know people will love to hear. But something completely unexpected has arisen in my telling it.

Very few things are sweeter than the kiss of a toddler coupled with a truly adoring, “I love you.” Any parent would likely agree. Sarah did that the other day with a kiss on my cheek. And this time, she decided to add something to it. She told me to close my eyes, and she softly kissed each eyelid one by one. She kissed my right cheek again. She kissed my left. She kissed my forehead and then pulled back, studied me for a short moment  to figure out what else she could kiss, and then moved in to kiss my chin. She kissed my lips. She pulled back once more, looked at my face, giggled, and moved in to get under my chin and kiss my neck. Proud of all she’d uncovered that could be kissed on my face, she sat back nearly triumphantly and smiled. She then moved her hands around and across the space just in front of my face as if to scoop up something from the air and said, “OK Mommy, now wrap them all up and put them in your pocket so you can give them to your friends all day.” I melted.

I told this story to two colleagues later that morning and got the reaction you’d expect. They laughed. They oooh’d. They aaah’d. They agreed that was one of the most priceless toddler tales they’d heard. And I gave them each a kiss from my pocket. It was a good day.

I came home that night and told Brian. I told my Mom on the phone the next time we spoke. I told my best friend. I even told some strangers in the weeks that followed. I kept telling the story with the intention of blazing it into my brain, so I would never ever forget the sweetness and the feeling I had had in that moment. I even wondered what could possibly beat this story. It occurred to me that I might have already experienced my very best moment with Sarah, and I wanted to savor it for all eternity. Then it hit me. What was my very best moment with Catherine? What had happened that I wanted to savor for all eternity? Did we even have one? Or was it still waiting for us?

That stumped me. And my heart sank. I couldn’t think of anything.

What was my very best moment with Catherine? Did I have one? Facing that question made my stomach ache. Surely I must. But nothing came to mind immediately so I beat myself up for not spending enough time with her and not doing enough with her. I kept driving wondering what it might be or when it would happen or if it ever would happen. That was not a good day.

My stomach woke up. I felt excitement. And a picture floated to mind of when Catherine was also a toddler – possibly two or three, I’d have to look it up, and she sat on my legs and did squats. This little girl who never would walk according to the medical community sat astride my thigh and did squats with a perfectly straight back and powerful legs. Over and over and over again.

As soon as I remembered that and felt the excitement, another memory overwhelmed me. She was much younger. I was struggling to figure out how she communicated. A teacher in our home suggested I bounce her on my knee for a bit, stop, wait and see what Catherine did. I followed her guidance exactly, and Catherine arched her back. Over and over again, she arched her back whenever I stopped bouncing her. She wanted more! My little girl who was “unable to communicate,” was talking with me in her own special way.

So now I have two. Which one is our very best moment? The one I want to hold with me for all eternity? I can’t decide.

Wow.

Sisters in a pretty great moment together.

Filed Under: Best Of, Moments Tagged With: cerebral palsy, disabled kids, hope, kiss on my cheek, love, Sarah, Sisters, toddler tales

Come on Mommy, Dance!

June 23, 2010 by Ellen Moore Leave a Comment

Two Mondays ago, we spent the day at AI duPont Children’s Hospital, confirming that Catherine needs surgery. Not just any surgery. A surgery where they will cut her bones on both her hips and one of her legs. A surgery that anticipates enough “discomfort” that Catherine will have to be out of school for a MONTH! And then – we’re told she she should be completely “comfortable” in 3-6 months. What? It makes my skin crawl.

“Discomfort,” of course is a euphemism for pain. And I really bad one, I might add. I just can’t let myself think about that much pain for my little girl. I say, “Bring on the drugs!” Not just for her; for me. Two weeks later, and I still can’t stomach it.

Thankfully, Sarah has a way of providing her own drugs for the pain.

When I come home at night, Brian frequently has music streaming through the TV on Pandora. We still play our game as I walk through the door:

Whoooooooo gets kisses first?

Daddy!

Whoooooooooooo gets kisses second?

Cackie!

Whooooooooooooooooooooooooooo gets kisses third?

Sarah!

Giggles and squeals still make this a perfect end to any sort of day. And now there is a new addition.

Sarah starts to wiggle and jump and run around in circles and then yells as loud as she’s figured out her lungs will allow:

Come on Mommy, Dance!

And so we dance. It barely matters what the music is, though fast is always better. We dance and giggle and spin and hug. And the reality is that this drug will do… for now.

Filed Under: Moments Tagged With: hope, laughter, Mom, Sarah

Daddy Fix It. With Tape!

May 1, 2010 by Ellen Moore Leave a Comment

Sarah has recently entered a “tear the page” phase with her books. It’s annoying to me, but she seems to get some sense of accomplishment from it.  She’s torn many pages and Brian diligently fixes them with packing tape.  Somewhere along the line, Sarah started looking at every torn page while saying,  “Daddy fix it… with tape!” She has such enthusiasm for the proclamation. And she emphasizes the “With TAPE!” part every time.

I was driving home alone after dropping both girls at Delrey on the morning of Catherine’s most recent IEP meeting (they were nice enough to let us put Sarah in daycare for the day – and the meeting went relatively well). I took a corner too close to the curb to handle the custom-lowered floor. I wrecked our six-week old van on the ramp door side. Ugh! The ramp wouldn’t deploy. The door barely closed. I didn’t even want to tell Brian.

Of course, I did, and the next morning when we had to all load  up for the trip to school, Sarah patiently stood outside the van and said, “Wait!” because she knew the ramp should come out of the door. It didn’t. We started to move toward the van, and again she yelled, “Wait!” but we had to keep moving so we wouldn’t be late.

I tried to explain that I had broken the van and the ramp wasn’t going to deploy. She looked so confused. She kept wanting to wait, so I finally had to pick her up and put her in her car seat so she could ride to school with Catherine. She struggled and screamed, and I finally said, “Sarah, listen to me.” She usually looks at me when I say that, and she did this time, too. “Mommy broke the van. Mommy broke the ramp. It doesn’t work anymore.”

She looked up at me with big brown eyes and in a split second said, “Daddy fix it! With tape!”

My body was laughing, but my soul shed a tear. Some things just can’t be fixed… With tape!

Filed Under: Acceptance - or Not, Best Of Tagged With: hope, laughter, Sarah, sister

Happy Birthday Sarah!

January 29, 2010 by Ellen Moore Leave a Comment

Yesterday was Sarah’s birthday. I had hoped to write in this blog then, but work got in the way. Which makes me wonder if now, rather than the Observer, I’m the Executive Mom who puts work before her kids. Yuck.

I actually don’t think so. I actually think I’m pretty balanced about it. Brian might disagree, and he does occasionally ask why I’m coming home so late when I call leaving the office again after 7 PM. But I do try really hard to get to the appointments and be there on the big days, and say prayers every night and kiss and hug both girls every day. Is that enough?

Yesterday, I came home after a pitch rather than going back to the office. I had left the house too early to see Sarah, so I wanted to see her in the afternoon – not just for the bedtime routine. We needed to do cake and candles and presents before she was bouncing off the walls and telling me she had to eat AGAIN just so she wouldn’t have to go to bed just yet.

I had an idea! I called Brian as I neared the house, knowing Catherine was in PT. “What does Sarah do during PT?” I asked. “We usually play in another room,” he said. “Get Sarah ready. I’m going to take her to The Park.” Both of us knew this was a special birthday idea.

Sarah loves The Park. “Park. Park. Park,” she says as soon as the word is uttered. She stands near the door and repeats herself, “Park. Park. Park.” It’s sort of like a puppy. She loves the slides and running in an open football field the best. She likes the swings for a bit – longer and longer each time, actually. But she always tells me when she’s “all done” on the swings. She is never “all done” on the slides or running and twirling in utter freedom.

I didn’t even take time to change from my pitch clothes. Daylight was slipping away, and we needed to go quickly. We ran out the door and headed directly to The Park.

Less than 3 minutes later, I got The Call.

Work.

They needed to talk with me about a presentation we have today. Work. Sarah’s Birthday. The Park. Really? I suppose I could have said no. And that’s what the magazines all say a woman is supposed to do sometimes. Was this one of those times? Should it have been?

I pushed Sarah in the toddler swing until she was “All done.” I had to make my colleagues wait when I got her out of the swing because her feet got stuck. I told them where I was, so they had to put up with a bad cell signal, the other screaming kids, Sarah’s cries when the swing hit her in the lip at one point, me disappearing for a bit to pick her up and give her a hug and kiss her tears goodbye. By the time I finished the call, it was getting dark and cold and I had only a few minutes to sit on the big swings and hold her and repeatedly sing “Happy Birthday, dear Sarah…” as we swung into the twilight sky.

I hope I will forever remember that late afternoon swing. Sarah never told me she was “All done.”

Filed Under: Best Of, Moments Tagged With: Birthday, Sarah, sister

The Stall at Bedtime

December 15, 2009 by Ellen Moore Leave a Comment

Sarah will always have one “stall tactic” that will work. Shhh, don’t tell her.

Last night, I came home from a day-trip to Atlanta on business. I had caught a cold and seems Sarah wasn’t feeling too well either. She didn’t even play our routine evening game: “Who gets kisses first?” “DADDY!” she usually screams. “Who gets kisses second?” “Cackie!” she’s taken to calling her sister. “Who gets kisses third?” At this point she usually screams and runs across the floor to a special spot in the kitchen where she giggles and squeals and waits for me to pick her up and cover her in kisses. But last night, she just sat in Brian’s arms and sucked her thumb and held BeBe close (her security blanket) and looked at me like I’d just invented this strange greeting.

I changed clothes, and Sarah decided she wanted to eat. We never want her to go to bed hungry, so Brian fixed chicken nuggets for her. Then she asked for strawberries. Then she told us she was all done. Then she changed her mind and decided she wanted applesauce. She didn’t eat much of any of it, and I realized she was stalling.

When she threw her spoon on the floor, she may as well have screamed “I’m all done here, people! Get me out of this highchair.” So I did. And we proceeded with the rest of our nighttime routine. Brush teeth. Read books. Kiss Daddy (though he had gone to get me medicine for my cold). Off to bed.

As we passed Catherine’s door, she looked in my eyes and said, “Prayers?” We usually say prayers with Catherine each night, but Catherine was in bed already when I got home. “We’re not saying prayers tonight, Sarah. Catherine is already in bed.” And then, the piercing cry, “Caaaackie! Caaaaackie!” while she reached up to the door handle and tried to turn it. How can I deny a sister’s love?

Sarah ran in and asked to be picked up and gave Catherine a kiss and hug and said, “I ov you.” As my heart melted, I decided some stalling is completely worth it. And then she went straight to bed.

Filed Under: Love Tagged With: Sarah, sibling, sister

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
  • Prayers Are Working - I Guess

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