hope Archives - Just Wait and See

Listen for Singing

February 26, 2019 by Ellen Moore 3 Comments

Deep in the mud and scum of things, there something always sings

Years ago, when my parents got divorced, my Mom had me make something for her. She never told me why or gave me any backstory, and I never asked. She had an old piece of slate broken into approximately the shape of North Carolina and she asked me to ink a quote on the gritty gray texture – “Deep in the mud and scum of things, there something always sings.” She told me it was from Thoreau and that has always made sense to me since he spent so much time outdoors around a wet, sloppy pond.

I never fully understood the reason she wanted it so badly. She was insistent and nagged me about it until I got it done. I believe it became one of her most prized possessions. And the quote certainly made sense given what I’m sure was a very painful time for her. My mom was full of optimism and hope and had a contagious smile and laugh. I have always admired her ability to find something singing in the middle of the scum. She is probably the reason I’m so optimistic and hopeful. I wish I could take credit for it all on my own – or with some of God’s help, certainly. The reality is that I believe she taught me everything I know in that regard, and she made me everything I am.

The slate is one of a box-full of things I pulled from her house after she died. It’s faded to barely perceptible words on what someone would easily mistake for trash. It sits propped on a brass art stand on a table in a heavily trafficked area just beside my home office. I have seen it and thought about what it says for 82 days in a row. At times I’ve been angry at it. “Yeah, nothing’s singing here,” I’ve thought. I’ve been looking – or rather listening – for something to start singing since the day in December that feels like a swirling vapor not even three months ago.

Catherine’s wheelchair waiting for someone new.

One of the more difficult days I’ve had since Catherine died was the day we donated most of her large equipment. We gave two wheelchairs and a jog stroller and a bike and a stander and various pieces and parts of the world that is disability to Cedar Lane School. They were incredibly grateful though I questioned who would really be able to use her wheelchairs since they were customized to Catherine’s specific body and needs.

A couple weeks ago, Brian had to go to Cedar Lane. I wondered what the day would be like for him and if it would bring death pangs, the opposite of birth pains, to his chest. When we got home that evening, I asked him about it, and he said that it wasn’t hard. He projects a calm fortitude, even in the midst of deep grief, and he sounded nearly incredulous that I would think it might be hard.

“Really?” I asked, an air of suspicion in my question.

“They told me about the girl who got Catherine’s wheelchair,” he said.

I paused and looked up at him. I was nervous about where this was headed. “Oh yeah?”

“They told me she wasn’t very communicative and then they put her in Catherine’s chair and she started talking and communicating a lot better because her body was supported better.”

Deep in the mud and scum of things…. There something ALWAYS sings.

With apologies to Ralph Waldo Emerson, who actually said the quote a little differently: “Even in the mud and scum of things, something always, always sings.” I sort of like Mom’s version better.

What Causes Stress?

July 4, 2017 by Ellen Moore Leave a Comment

Psychologists will tell you, according to Darren Hardy in his best seller, The Compound Effect, “Nothing creates more stress than when our actions and behaviors aren’t congruent with our values.” I think I disagree.

I lead a business book group and we just read this book because it had dramatically altered the life of a member’s husband. Our group creates the questions for the discussion by each writing two questions for the bowl and we pull the questions out for discussion. It’s a great way to uncover broad aspects of a book that a single leader might miss. This was one of those situations.

Page 66. I missed it. I mean, I read it, sure. It didn’t settle into my bones though until someone asked a question about it. I struggled with it so much that someone asked me why I was struggling with it so strongly. Great question.

Changing the Definition of Stress

A member who agreed with the premise (and most did), said, “I want to hear the situation that proves this wrong,” (or something close to that). Well, I said, Catherine’s life causes us a lot of stress and I don’t think that has anything to do with my values. “For example, if a nurse doesn’t show up, that creates stress for us,” I said. “That doesn’t have anything to do with my values,” I added. I didn’t want to go too deep about it, but I was also thinking that when Catherine has a seizure, that causes me tremendous stress and I don’t think that reflects on my values either. The members quickly reframed the point and said that perhaps the thing that causes the stress is a misalignment with expectations. I could certainly agree with that!

I kept wrestling with the written premise, though – and more importantly the very good question of why this troubled me so much. Perhaps it’s because I know how much stress I feel and the possibility that meant my life isn’t congruent with my values really disturbed me. In fact, I am very intentional about living my life to reflect my values.

One of the things I’m trying to learn – consistent with my values – is to be true to who I am, rather than some notion of who I’m supposed to be. And in being true to who I am, I am learning to keep, file and delete some ideas that come across my plate. I researched the premise a bit and can’t find an original source to “the psychologists.” I could find several google pages of Darren Hardy attributions and people accepting it as fact. Maybe I could look a little harder. I think in this instance, this is going to be one of those ideas I’m simply going to choose to delete – with apologies to Darren Hardy!

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.

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.

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.

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…

Catherine standing tall 7 weeks post-op.

Look how straight that back is!

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.

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

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!

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.

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

August 3, 2013 by Ellen Moore Leave a Comment

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.

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.

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

August 3, 2013 by Ellen Moore Leave a Comment

This is Catherine smiling 🙂

Book of Common Prayer

A Sliver of Hope

July 28, 2013 by Ellen Moore 6 Comments

WOW! I still can’t believe we raised over $5,000 for Bello Machre. Thanks to all of you who donated and supported us for the walk.

Catherine and Sarah after the walk.

Catherine will use the money to help with surgery expenses that are upcoming. She’s getting ready to have a pretty major surgery and I’ve had a hard time dealing with it, frankly. For a long time, I didn’t even talk about it. Then, I talked too much about it and was too cavalier. Now, I am trying to deal with the logistics on top of the extraordinary stress of thinking about just what a big deal this surgery actually is.

Don’t get me wrong. She’ll be in great hands with Dr. Freeman Miller at AI DuPont Hospital for Children. He’s among the best, if not the best, in the world. In fact, we asked a knowing doc at Hopkins if we should consider someone there for another opinion or as an alternate provider and he shook his head immediately and said, “No. Go there. You’ll be in great hands – he’s the best.” I’ll let that doc remain anonymous because if you know anything about Hopkins, you know they never refer out of their system. Even US News and World Report cites the accolades of the orthopedic group at AI duPont and ranks them #5 in the country. That’s all comforting.

But this is a big surgery. Catherine’s spine is curved 78 degrees so Dr. Miller will straighten it and will use a rod to hold it straight.

See the marker at the 78 degree turn.

It really hit me when our therapist said, “Well, let’s do a lot of ball work because she won’t be able to do much after surgery.”

“You mean while she heals?” I asked.

“Well, no. She’ll not be able to bend over the ball after the surgery. Her spine will be stiff.”

Ugh! So, my snuggly little girl won’t be so snuggly anymore. The one who has cuddled up to my skin and Brian’s chest since she was 3 days old will sit erect. I’m sure we’ll find a way – some odd way – to hold her so we can snuggle together. It just won’t be the same. Actually, after every big event for Catherine – it’s never the same.

Her spine is not just curved side-to-side. It’s also curved front to back. In fact, we found out just how severe it was when we thought we felt poop blocked in her intestines. Unfortunately, she got the wrong end of all the treatments to try to fix that before we had an x-ray in the ER and they finally said, “What you feel through her belly is her spine.” Yowzie. I literally didn’t believe it. When we went to see Dr. Miller, he immediately confirmed it.

You can see how much her spine is curving forward making her whole pelvis tip severely.

Hopefully though, we’ll get the results a friend’s son got. Hopefully Catherine will breathe better and get less seizures and not be in the pain she seems to be in now. And hopefully her organs will spread out and grow correctly and enable her to thrive. I even think that if a rod is holding her spine straight then maybe she’ll be able to hold her head upright, too. I figure it’s possible and a girl’s gotta dream – especially in the face of this particular surgery. So, despite the laundry list of things this surgery will bring – all in some weird rule of “fives” – through some grace of God I find a tiny ray of hope. I’ll confess though. It’s really tiny.

She’ll be on the table for 5 hours. She’s expected to need 5 pints of blood. We’ve been told to plan on 5 days in the ICU (what surgery requires FIVE days in the ICU anymore?) and then another 5 days in the regular hospital. Our surgeon told us it’s the equivalent of an adult going through open heart quadruple bypass surgery. Yeah, it’s sort of a big deal. I’ll be hanging onto that sliver of hope picturing my little girl sitting straight and maybe even holding up her head.

And like everything in Catherine’s world since the day she was born, oh so small. We’ll sit in the waiting room in a few weeks, and we’ll just have to wait and see.

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A Birthday for a Blind Girl Who Barely Moves

March 9, 2013 by Ellen Moore 9 Comments

Sarah has her birthday parties planned until she is 7 years old. This year, she planned bowling, next year when she’s six, she wants her party at school. And when she turns 7, she’s planned a craft party at Michael’s in their special birthday room. Easy. What do I do for Catherine, though, who is blind and can barely move?

Planning parties for Catherine is tough. I want them to be relevant to her and fun for her, and that’s hard to know. I always have to manage Brian’s question of “Why are we doing this again?” And I’m left to wonder, “Who do we invite?” Mostly, though, I struggle with figuring out how to make it relevant and enjoyable for her. I succeeded in that when she turned 3 and we had a pool party and rented the therapy pool at Severna Park Community Center. They did an amazing job and even cleaned the pool deck and all the toys because they knew getting sick was harder to deal with for kids like Catherine. We also had a sensory event that I created. Normal kids and disabled kids played together and it was magic. I wanted that to happen again. And I wanted Catherine to have fun.

I read an article in some girly magazine that said a mark of maturity was knowing how to throw a party where you didn’t do all the work. True confession: Part of the reason the party for Catherine was so hard was I just didn’t have the energy to pull it all together. This article talked about how to pick a theme and ask guests to participate. That’s when it hit me! What if I could invite people to bring some sort of musical instrument or something that made noise from their basement or Goodwill – nothing fancy – and I’d find a “crazy, creative music teacher” to orchestrate whatever came into the house. I even thought about prizes for the instrument from furthest away in the world, and the most beautiful sounding non-instrument and the smallest sound-maker. I could see it all; I just had to find the teacher.

Immediately, I sent emails to some friends. No one knew the right person and I almost gave up hope. Then, I was sitting in the lobby of ballet class and asked some of the moms there. I didn’t find the “crazy teacher.” Instead, someone suggested drumming. Hmmm – that could be interesting.

Long story short, I found Nellie Hill – a certified drumming facilitator who had worked with kids with special needs and loved the idea of having everyone bring something – she called it a “Found Sound.” She immediately embraced my idea, told me she’d bring the drums and we picked a date. Wow! It was amazing.

I’ll let the pictures tell the story from here. I wound up going overboard on decorations and food and the theme. The energy just came. Our whole house filled with energy and Catherine opened both eyes, relaxed enough to let us move her arms up over her head (she normally doesn’t do that!), and even the “normal kids” – siblings of some of the invited guest, had a blast. We had 5 kids with disabilities and their parents. It was a treasure to figure out how to fit four wheelchairs in the house and help these families feel a sense of togetherness that is often void. I hope everyone had fun. I did. And I genuinely believe Catherine did as well.

Music Bottles

Party Favors

Brailled bags to hold party favors

Drum sticks! Get it?

Look at all the drums!

Catherine playing chimes.

Nellie Hill and me. God bless Nellie Hill.

Opened with a story – Be Quiet Mike!

Figuring out how to play drums.

Family fun.

Gettin’ down with Nellie!

Sheer happiness!

Instruments and sound makers from all over the world.

A perfect cake for a 9 year old.

Really? Every year you make me do this!

Happy Birthday Catherine! I love you.

My Pride is Leaking

July 27, 2012 by Ellen Moore 2 Comments

Brian and Catherine had three medical appointments this week. I’m picking up the pieces from a really intense new-biz week and the flu last week at work. And Sarah started a new school. In comparison to last, this week has seemed relaxing though.

One of the appointments Brian and Catherine had was to see our neurologist at Kennedy Krieger. Catherine’s been having more seizures and he finally suggested medication on top of the ketogenic diet. Catherine’s had 10 big seizures that required Diastat this year so far. Last year, her most ever, she had 13. So, at this pace, we’re poised to blow past that number by a lot. To medicate or not medicate? That is the question.

I hate the thought of Catherine on seizure medication. This is going to sound weird – and my apologies to any parent who has a child on seizure medication – but I have a confession to make. It’s a bizarre source of pride for me that she’s not on seizure medication. I don’t even know the analogue to that in the normal world. Maybe it’s being proud of your daughter for not being pregnant in high school? I just know whenever the docs and nurses do an intake and we tell them she has seizures this is how the conversation goes:

What medication does she take for the seizures?

Diastat for her big ones.

Uh-huh. And what else?

Nothing.

They usually look up from a clipboard or a computer screen at this point. Nothing?

That’s right. She’s on the ketogenic diet and we don’t give her regular seizure medications.

And that’s when the little tiny feeling of pride leaks out of me. Weird, huh?

So, now, Brian and I are supposed to be deciding whether to put Catherine on Kepra or not. And that’s bizarre, too. It wasn’t that long ago in medicine that doctors simply prescribed and the patient (or the patient’s parents) just did it. Not much “thinking” to be done. Now, everything is a decision in partnership. And that makes it harder on us.

I just watched a TED talk about this very dilemma while I was sick. Baba Shiv, the speaker in this video, studies how we make the choices we do. He speaks about the energy it takes to heal a body (it was cancer in this TED talk video) and how that can be disrupted with the energy it takes to decide aspects of your treatment. Studies have shown that too many choices make us less happy and Shiv posits that this can be true in medical choices as well. Watching this video, and using it as a foundation, one might argue we should just put her on the Kepra.

I sit for a moment with that thought, and I still can’t bear it.

I guess my pride is leaking more than I realized.

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.