Hope Archives - Just Wait and See

I Ran on Streets of Gold

April 5, 2016 by Ellen Moore 5 Comments

I could make excuses. I could say I don’t have the right gear. Or a place. Or the time due to all the doctors and nurses and therapists coming in and out of the room.

Or I could make the most of what I’ve got. I could take a look at my resources and figure out what is possible. Two roads diverge is this wood. I take the one less traveled by. And that makes all the difference.

Catherine has been in the PICU (pediatric intensive care unit) at Johns Hopkins for a week. I started getting a little crunchy – which is code for angry and bitchy. I realized I needed to exercise. I needed that flow of endorphins to bathe my brain and help me find the light in what many would view as a dark situation.

I asked about a gym. I figured the staff at the world’s best hospital might have a gym for managing all their stress. Maybe I could talk my way in there I thought. I learned they have one. It’s card accessed. And it’s pretty small. Hmm – that didn’t sound like the path I wanted.

So I went looking around over the weekend when the H was quiet. Eureka! A long beautiful hall with lots of windows through which crystalline light pours onto glimmering floors. I walked the hall wondering how far it went. Around a corner. And another. Then I hit the end, found a column I could loop around and determined I could definitely get a good run here. No idea how far it is but I set a timer and just ran. I ran in a long hallway inside Hopkins with beautiful light cascading onto glistening floors that reflected mica-type flakes. In my mind they were gold.

We can do anything we set our minds to do. We can choose to be trapped indoors or run on pavements of gold. Thank you Catherine for the opportunity to find the gold.

Pushing Past ‘Crazy Mom’

February 18, 2016 by Ellen Moore Leave a Comment

This simply blows my mind. It’s not what just happened that is so surprising, it’s also how I reacted that I found shocking. Fortunately, I was able to catch myself in the moment and bring it together.

I was talking with Catherine’s teacher about some aspects of her school day. The conversation turned toward eating. At school, they refer to her lunch experience as “tastings” and I send in various foods each day. In our prior county, they wouldn’t feed her at all. Period. It was one of the many sources of tension that eventually pushed us out of that county. At Delrey, they worked on therapeutic feeding. I was so grateful. Here in Howard County, we settled on “tastings.” I always thought that was a euphemism and figured it was better than nothing.

“What’s your goal for Catherine relating to this?” her teacher asked me on the phone.

I paused. I guess I paused just long enough because she continued… “I mean, do you want her to actually work toward a swallow or do you just want her to have different tastes? Do you think she’ll be able to eat on her own one day?”

There it was. One of those many questions people ask that rubs right up against what I desperately want and what any sane person will EVER think will actually happen. She asked the question in a very genuine way. It was unlike the accusations and doubt behind questions I’ve received from many others. She was genuinely filled with curiosity and trying to figure out how to help Catherine the best.

Part of me was shocked. Why wouldn’t I want her to eat, right? Why is this question even necessary? Why would I settle at “tastings”? And part of me was terrified. “Be careful, Ellen,” I thought. “This is how folks determine you dream too big for your daughter. This is how schools decide you’re unrealistic. This is how the people who ‘know better’ put me in a box labeled “Crazy Mom Who Is In Denial.” ” I took a deep breath and decided to press forward. To be real. To simply be myself.

“Well, let’s see….” I pressed forward carefully. “This is where I’ve been told in the past by Maryland School for the Blind that my expectations are too high. But here’s what I know for sure,” I said, ” If we don’t have the expectation, then I know for sure it will never happen because we will never try. So yes, though it may seem crazy now, I would like to think she can eat by mouth (and then I pulled back just a little) – maybe one of her meals each day – eventually.” Wow! I said it. Thinking back on it, I didn’t even sound that convicted myself. It was one of those sort-of kind-of statements that sounds so weak someone could blow it off with a whisper. If someone really pressed me and said, “Oh come on, do you really think that’s possible?” I would have a hard time answering yes. But oh how I long for it to be true.

I do know absolutely, positively, beyond a shadow of a doubt that if I don’t set the vision, folks don’t know where we’re going and we’ll for sure never get there. For sure. So, I was proud of me for saying it, even if I was nervous this was going to start a tense conversation just like it had in the past.

“OK. That’s great to know. Now I know where we’re headed and I can work toward that,” she said. She didn’t argue with me or make me feel like I was nuts. She simply took in the goal and said she’d start working toward it. I guess this is how a mustard seed of faith can start to move a mountain. Won’t it be cool to see this mountain move?

Why I Choose to Choose

January 7, 2016 by Ellen Moore 2 Comments

Each year, many people set New Year’s Resolutions. Statistically, most of these people fail by February and nearly all by March. Why would you keep doing that to yourself. Isn’t the definition of insanity doing the same things and expecting different results?

A few years ago, I learned about an alternative. You can get the book at Amazon – One Word That Will Change Your Life. It says in one of the first pages that the book was written to be read in 44 minutes. Not 45. I liked the precision and advance notice of how much of my time I needed to invest. I read it while I waited with Catherine to be discharged from AI DuPont when she had her spine surgery in 2013. Turns out it takes more than 44 minutes to be discharged from the hospital so I actually got to finish the book.

I can give you the gist in less than 10 seconds:

Rather than set a resolution that statistically will fail, choose a word to focus on for the year.

That’s it. Like most things in life, the simpler the better – and frequently the more profound and true.

I spent the time between Thanksgiving and Christmas this year allowing words to roll around my heart, mind and soul. I even had a list of contenders. Over time, I reflected and narrowed and found the word I knew needed to be my word for the year.

Choose.

What’s yours? You’ll be amazed at how you get to live into it and you’ll be mystified at the changes that will manifest if you really allow one word to become the center of all you do for the year.

So choose a word. I dare you.

Winding Down and Heading Home

December 12, 2015 by Ellen Moore Leave a Comment

Toward the end of the day we got balloons from the balloon man. I got an ideal massage!!! We played with the Army bomb guy (yes, you read that right) and then relaxed and listened to some music. Last on the list was to step through the magic door that brings us back home in a second. Another great trip. Thank you United and Connections beyond Sight and Sound and Children’s Hospice International. Merry Christmas to all and to all a good night!

I have to say that this trip gives me a little extra shot of faith each year. Thank you to the must-be hundreds of volunteers that make this happen. You give us far more than a day at the North Pole. You give us laughter and hope. Thank you!