Just Wait and See

A blog about hope, despite the disabilities.

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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!!

Filed Under: Best Of, Moments Tagged With: Walk

How to Handle Rejection

October 22, 2015 by Ellen Moore Leave a Comment

Yesterday, I got a text from our nursing agency. “Well, I spoke with [Nurse]. She is not interested in picking up any time with Catherine.”

What? I felt like I’d been punched in the gut. The nurse had told me the night prior at her orientation that she’d start on Sunday. I had liked her. Based on her smiles and conversation with Catherine and responses, I thought she liked us and would be a great fit. She even only lives ten minutes away from us.

After reading the text, I felt a feeling swelling inside of me that I didn’t really understand. It started in the pit of my stomach and grew out to my shoulders. It was black and hot and then it coiled itself up back into the pit of my stomach where it sat like a hard rock. I had felt the feeling a few months ago when I got let go from my job – much more intensely in that situation, of course. The feeling had the same character, though. It was the feeling of rejection.

Why?

All I wanted to know was why she didn’t want the case. Had I done something wrong? My mind raced through as much of the orientation as I could remember. I’d tried a new format and used a checklist. There is simply so much to remember to tell nurses about Catherine and we’ve oriented so many nurses. Even Sarah thought the checklist was a good idea. And so did the nurse. She said it was very helpful and asked me to leave her a copy when she started. Had I asked her something that offended her? Was the house too messy? Did she not like Catherine? How could you not like Catherine? She’d told me she thought Sarah was very smart, so I didn’t think it had anything to do with her. Could she not say yes, because she hadn’t met Brian? He was at class and we were eager to get to meet her so we’d decided to orient any way. I had told her how much he loves Catherine and what a great dad he is and that he was the “strong and silent type.” Did that cause her concern?

Why? Why didn’t she want to work with us?

I texted the agency back and when I didn’t hear back quickly enough, I called. The coordinator didn’t have any good reasons. “She said it was too much for her.” What does that even mean? I pushed a little and heard that Catherine was too heavy. “It’s one lift. I can run downstairs and lift her so she doesn’t have to do it if that’s all that’s standing in the way.” Our coordinator said she’d call and see if that would help. In the pit of my stomach – the same place the rejection feeling came from – I knew it wouldn’t. We’d been rejected for some unknown reason. And sure enough, the coordinator let me know a short time later that the nurse had turned off her phone.

I could continue to fight it and wrestle for a satisfying answer to the “Why?” I could try to convince the nurse that we were a good place to work. I’d even made that a point on the checklist – that we care about the nurses and want them to feel comfortable so they could watch TV, use our WiFi, put food in the fridge, use the microwave – and to let us know if they needed anything at all. The reality was that it didn’t matter. I’d learned that several months ago when the rejection stung more intensely. It never matters why because if you have to talk someone into it, it’s never really acceptance. The rejection always wins. And truthfully, rejection is almost always about the person doing the rejection rather than the one being rejected. It never feels that way though. Never.

So, when Brian got home, I told him what had happened. “Oh well,” he said. “Oh well?” That’s all he could say after my body was feeling all this energy spinning around? Granted, I knew some of that energy was connected to the more significant rejection I’d felt earlier in the summer. But seriously…. “Oh well?!”

Waking up this morning after some good sleep and seeing the sunshine, I realized he was right. “Oh” is the statement of recognition. Acknowledgement. Matter of fact. And “well” is the statement of what will be in time. It will be well. There is no space for the why. It ceases to exist or even matter. So, yes, rejection happens. The why doesn’t matter. And it will be well… in time.

Filed Under: Best Of, Perspective

How to Achieve Your Goals in One Simple Step

October 1, 2015 by Ellen Moore 3 Comments

Now that I’ve put it out there, I feel an obligation to write. I said I’d be writing more to anyone reading this and so I feel like I must make that happen. Just because I said I it was a goal of mine.

I’ve heard it said that you share your “do more” goals with friends and keep the “give up” goals to yourself. Or is it the other way around? I sort of think that regardless of the type of goals, we need to share them with someone if we really want to make them happen. For example, we have a goal-setting dinner as a family on New Year’s day. It’s part of our tradition with collards and black-eyed peas and driving to the beach to have a picnic in the freezing cold where we can feel the energy of a fresh start to the year. We each think about what we want to make happen for the year. We write it on a piece of paper and tuck it into these glittery boxes that make the ritual seem extra special. Even Catherine sets some goals.

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Usually, we keep the goals private. I’ve never pushed that point with the family as I respect each person’s privacy with their own goals and wishes and dreams. I even wish there were a way Catherine could write goals on her own so she could keep them private if she wants. A couple of times a year, we pull out the boxes at dinner and each look at what we wrote in order to make sure we’re on track to hit them by the end of the year. Sometimes they get discussed. Many times, the goals remain special and private.

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This year, we had set a goal to travel internationally, so we made that happen. We had shared that goal with each other and knew it was in our goal boxes. When I left my prior employer and had no income, Brian and I discussed whether to cancel the trip. Knowing it was a goal in our boxes, I thought about it a little differently. There was already an expectation we would make it happen within the family – and so we did. And wow am I so grateful we did!

I am coming to believe that it really is more powerful to share your goals with someone – all of them. People want to help when they hear them. People want to encourage you – hold you accountable – help you make it – all because it seems it’s human nature to want to see people do what they say they want to do. And sharing the goal seems to set an expectation in the mind that it will happen. I wonder if neuroscience can prove that yet?

I think this time, in January, we may do it differently and share our goals with each other. Because a goal shared is much more likely to find its way to accomplishment. Take a risk today. Share one of your goals with someone and see what happens. If it’s too scary to tell your spouse or best friend, then tell a stranger waiting in the grocery line while you’re chatting. Sometimes it’s easier to share the big stuff with someone who isn’t so intimate.

I find that the act of sharing my goals – as wild and “impossible” as some of them are – starts to build hope. And hope builds action. And action brings results. And that gets us past our own disabilities.

Filed Under: Best Of, Hope Tagged With: beach, cerebral palsy, disability, goals, hope, hope disability goals

Unfolding

September 24, 2015 by Ellen Moore Leave a Comment

Some days, I don’t know what to write. And when I don’t know what to write, I simply don’t. I’m learning that there is a discipline writers follow to write every day – even if they wind up throwing it all away. That’s always seemed remarkable to me. I typically wait to hear God speak and then write down what he says – more or less. Today, I’m trying it the other way to see what happens.

I’m aiming to write several days a week – not always in my blog. Every day seems a bit much right now. And I have other things I want to write, so there are days set aside for those writings. For example, I have been writing to Sarah since she was born. I tell her about what she’s naturally good at doing and what sort of things I want her to know when she grows up about how her early years were so powerful. I always wished I had something like that to reference, so I figured I would give that to her. I don’t know when I’ll give it to her – maybe as a graduation gift? Or maybe there will simply come a time when it seems she needs to read it. I’m open to how that unfolds.

It’s harder to write when you don’t have God whispering in your ear. I may have to get some writing exercises to see how this progresses. I think I have to be open to how all that unfolds as well. And as I think about it, we have to be open to how everything unfolds. Stress seems to come from resisting the way the unfolding is occurring or from trying to make it unfold in a certain way. Reflecting on this metaphor a bit, I think about various things that unfold – a rose bud, the wrapping on a package, a table cloth, a love letter. We don’t usually restrict or try to control the ways those things unfold. So, why do we do it with our lives? God probably just laughs at us.

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Can you imagine if you were looking at a rosebud every day trying to get it to unfold and blossom in the way YOU thought was best or that you wanted? Can you imagine opening a package and trying to unfold it exactly how you wanted rather than being focused on whatever was inside the box? What if instead of just opening up the tablecloth and putting it on the table, regardless of how it unfolded, you studied each fold and debated whether it was a good fold or a bad fold in your head? What if you tried to pull it a certain way as you unfolded it only to realize a wrinkle had formed in the middle – deep within the folds you could see? You’d get out the iron, right? (Not if you’re me! My mother will confirm it’s true that the iron doesn’t fit my hand.) And I feel pretty confident in my belief that no one pays attention to the folds when he or she is unfolding a love letter. We just want to see what beautiful words were written to us. We stay focused on the prize at the end – not the process of getting to the prize.

I think God’s prize for us here on earth is abundance and peace. He says that’s why he came to earth. If we focus on that prize, rather than the manner in which he has wrapped those gifts, we can simply observe the glorious unfolding and watch as the gifts appear. Sure, there may be some wrinkles we didn’t know would be in there – maybe even some stains we can’t remove. And we may have to figure out how to deal with those. Overall, though, we’ll get to witness the extraordinary blossoming that is occurring and we’ll get to experience the abundance and peace that are our gifts.

I keep a quote on my desk from Anais Nin. It seems quite relevant today:

It takes courage to push yourself to places that you have never been before… to test your limits… to break through barriers. And the day came when the risk it took to remain tight inside the bud was more painful that the risk it took to blossom.

I hope we can all watch with anticipation as our gifts from God unfold before our very eyes without getting too caught up in the manner in which things in our life are unfolding. If we can do that, believing that the gifts will show themselves even if the unfolding is messy or confusing or not as we would have done it, I believe it’s possible to keep hope alive and keep a spirit of thanksgiving in our hearts.

Take this post as an example. I had no idea where it was going. And look what just unfolded.

Filed Under: Best Of, Perspective

Teaching the Basics

September 4, 2015 by Ellen Moore Leave a Comment

“Mom, you can teach Catherine the basics while I go play on the playground. OK? I’ll be on the playground. Have fun Catherine!” Sarah’s voice trailed off as she ran across the tennis court to the gate leading to the playground. We had just finished playing some tennis together while Catherine sat under an umbrella shielded from the sun.  For about 5 minutes, we got Catherine on the court also and Sarah tried to hit balls with her. You can probably imagine how that went. 

In Sarah’s mind her sister just needed some more basic info and then they could play together. My mom brain thought it was cute. My mom brain also thought it absurd.

Or was it?

Left alone on the court with Catherine in the hot sun while Sarah bursts off to the playground, I had a few choices. I could pack her up and take her inside for Sarah to come home a little later. I could set the tennis gear aside and go for a quick walk. I could just stand there and wait. Or – like my brilliant daughter suggested – I could teach Catherine the basics. 

I realized how strange it must look when someone walked by and looked at us on the court. I had Catherine’s hands on the racket showing her the shape and size. I dragged her fingertips across the strings explaining that was the part that hit the ball. And then I let her feel the fuzzy ball. She really liked that and kept her normally curled fingers open wide to feel the rough texture of the ball. I even saw her smile. Then I put her hand on the grip and explained the need to shake hands with the racket, just like my mom had when she declared I needed to learn a lifetime sport – either tennis or golf. 

I thought we were done. And then an image flashed before my eyes – hit the ball and let her feel that. I popped a ball into the air and gently tapped it against the strings toward the fence. Catherine smiled again. 

I kind of beat myself up for not being willing to teach Catherine tennis when Sarah suggested it. I have to confess it seemed rather silly and a waste of time. Contrary to many people’s opinion, I do go through times thinking a lot of what we do with Catherine is wasted energy. I get really down on myself for thinking that way. It’s important to be real about it though. It happens. I’m not always the mom so many people think I am. 

So we hit the ball a whole bunch more times as I realized three profound truths – 1. Always start with the basics, 2. A little child would lead me, and 3. Sometimes you just gotta fake it til it’s fun. Who knows where any of these might lead us.  

Filed Under: Best Of, Perspective

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

God is in the Band-Aids

December 7, 2013 by Ellen Moore Leave a Comment

When we walked across the bridge into Hopkins the Friday after Thanksgiving, I said, “Who thought THAT was a good idea? They look like Band-Aids!” Everywhere I looked out any glass surface, I had to look through marks on the glass that were beige-ish in color, about 2-3 inches long, horizontal with a slight curve. Just like a Band-Aid.

Over the course of our week at Hopkins, these Band-Aids became more and more of an irritant. Every time I looked out over the city of Baltimore I had to look through – not just some designer’s disruption of the view (which was actually pretty nice from the 12th floor) I had to look through Band-Aids! In a hospital!!

I drive home one night after about 2 hours of non-consecutive sleep on a rant about these Band-Aids. I’m not known for cussing and I called my girlfriend and let out a sailor-worthy string of expletives. All about the Band-Aids. And of course my parallel frustration that we weren’t learning anything new. Sure, Hopkins was as we were their lab rats. I wasn’t.

I had asked people to pray for seizures and they did start to build. And every morning the team would come in and say “We didn’t see any electrical charges that would indicate seizures last night.” I remember thinking in my cynical mean mind that it was because there were too many freakin’ Band-Aids and they couldn’t see through them.

Then one morning I woke up and read a reflection about God and realized He was there. Guiding all of this. And He had led us to Hopkins on several occasions previously, not one of them when I actually wanted to go. I softened. I thanked God. And I walked in faith thought the Band-Aids every time I entered and exited the hospital.

On the morning we discharged, the attending came in and said, “We saw a seizure last night. And because we saw that we were able to figure out what was happening. Rather than spiking the EEG waves, she flattens. And now we have a very clear pattern.” And for the first time I was actually, truly, honestly-in-my-heart grateful for seizures.

So we know a little more. We now walk down the experimental trial-and-error road of anti-seizure medications. Catherine got the electrodes removed and had a spa-like shampoo. And we walked out through all the Band-Aids. This time though – God was in those Band-Aids.

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Filed Under: Best Of, Perspective Tagged With: Hopkins

Before and After

September 23, 2013 by Ellen Moore Leave a Comment

Just a few photos to show you how far we’ve come…

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Filed Under: Best Of, Perspective Tagged With: surgery

Shadow Dancing

August 14, 2013 by Ellen Moore Leave a Comment

Sometimes light tells the story.

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Filed Under: Best Of, Matter of Fact Tagged With: surgery

Live Like You're Dying – In a Couple of Weeks

August 3, 2013 by Ellen Moore Leave a Comment

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This is Catherine smiling 🙂

I’ve been thinking about death a lot lately.  Most people don’t think about it – or rather what I mean is they don’t have to think about it. I’ve had to think about it since the day Catherine was born. I especially remember thinking about it in the context of whether I would have to make a horrifying decision to allow her to die. God’s grace spared me that actual decision though I did ponder it in the stillness of long, lonely nights spent waiting.

Years ago, we had a transitional priest at my church while we were waiting for a new priest to be called. He was great. Full of energy. Really inspirational. And I found myself wanting to hear what he had to say rather than just sitting through it (come on, we all do that at times!). He led a Sunday School session where we studied the funeral service of the Episcopal Church in the Book of Common Prayer. I remember wondering if I was put in that class because I was going to have to plan a funeral service soon. I nearly quit going because of that thought figuring if I didn’t attend, maybe no one close to me would die. The obvious fear was Catherine. Though I let it extend to others in my life in my absurd worrying.

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Book of Common Prayer

 

Thankfully, no one died. And I didn’t quit. I stuck with it and eventually encountered a challenging part of the service. While earth is cast upon the coffin (it’s actually written that way, you can look it up on p 485, 501 BCP), the Celebrant says, “In sure and certain hope of the resurrection to eternal life through our Lord Jesus Christ, we commend to the Almighty God, our brother N; and we commit his body to the gound; earth to earth, ashes to ashes, dust to dust.”

What? What is certain hope? That is a definite oxymoron. And what’s up with hope for resurrection to eternal life anyway? I thought part of the deal was that as Christians, we believe it is going to happen. If someone dies, and he or she believes the Gospel, then that person would have eternal life. So, I asked about that and encountered a discussion I barely remember. It kept nagging at me though, so I did a little research, and  I definitely remember the following Sunday.

Walking into church that next Sunday after struggling with my question during the week and not being satisfied, I saw the priest stereotypically on the front steps of the church. I shared a bit of my research and he asked me to share it with the Sunday School class in a couple of weeks. I accepted that invitation on faith, hoping I’d find something to say.  It resulted in a pretty powerful presentation that I went on to share with a crowd at my home church in NC as well. And I concluded that hope is emotional, belief is mental and faith is active – faith enables our actions.

Now, I’m thinking about death again in the face of Catherine’s surgery. Some of that is around logistics such as where do I want Sarah if it happens and how will we tell her. Most of the thinking though is about what I want to do with Catherine over the next two weeks before she goes in for surgery.

I just had a chat with someone about what happens when you face near-death and whether the changes everyone swears they’ll make are actually sustained. Many people post quotes on places like my Pinterest board that encourage readers to live life like they were dying. I’ve actually thought about that a lot. “What would I do if I were going to die tomorrow?” kind of thing. The reality is that you can’t live life that way – at least not all of it.  Because, let’s be honest. If any of you reading this blog knew you were going to die tomorrow, you probably wouldn’t take time to read this blog. Don’t worry – I’m not offended. I might make a final blog entry, but I certainly wouldn’t run around reading others people’s blogs. And I’d not pay the bills, nor do any laundry. And I’d not go to work. And if I lived every day “like I were dying” my life would collapse because I do have to go to work, and I do have to pay bills. (Regardless of what’s happening in life or death – laundry, however, can wait!)

So, these two weeks prior to surgery are an amazing gift. They are a wonderful window of time where it’s short enough that I can actually do some special things that I’ll want to make sure I did if Catherine does die. And it’s long enough that I can continue paying bills and going to work and doing all the stuff we have to do in reality. I can take care of the responsibilities AND treasure the moments with Catherine. And I think that’s really how we’re supposed to live life. Not as if this were our last day. Rather as if we might lose everything in the next couple of weeks or so. We need to continue to meet our responsibilities, AND we need to make sure we both create and treasure special moments.

These next two weeks, I want to live life as if these are her last few weeks. We’ll hope that they won’t be for sure! And I’ll act on faith that they won’t be as well. However it turns out, I will know I had no regrets. And after all of this deep thinking for a summer Saturday, this weekend, I’m taking her swimming.

Filed Under: Best Of, Hope Tagged With: cerebral palsy, hope, spine surgery, surgery

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Hi, I’m Ellen

I’m just a mom making my way, but my way is a little different. And yet, very much the same. I have a 13-year-old daughter, Catherine, who was born at 25 weeks and weighed one pound, nine ounces. Despite a very severe brain bleed, she lived and inspires me every day with all she works so hard to do... Read More…

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