Making a Difference Archives - Just Wait and See

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!

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.

The Miracle of Meditation

February 4, 2016 by Ellen Moore Leave a Comment

When I went to Miraval in 2014, I had a session with a Native American healer. I told him about Catherine and he changed my paradigm forever. He told me there were Tibetan monks who sat in caves completely still and silent while they meditated for the world and all of humanity. They had people who served their every need, he explained. Someone fed them, bathed them, and made sure they used the bathroom and got cleaned up afterward. The monks didn’t speak and simply sat in stillness while they meditated every waking moment of every day. He asked me, “What if you daughter is doing that and you and your husband care for her like people care for those monks?” Suddenly, her inability to do much physically looked like an extraordinary purpose rather than an unfortunate state of being. I haven’t thought about that in a long time.

Tuesday night, I took Catherine with me to a meditation workshop – honestly because I wanted to go and I wasn’t sure what else she could do. I figured she’d just sit with me. We arrived a little late though fortunately the meditation hadn’t yet started. I felt disruptive as I pulled Catherine’s arms out of her jacket, never previously aware of how much rustling noise that made. Then, I had to turn off her feeding pump so it wouldn’t go off in the middle of the meditation. Beep! Everyone stared as it screeched when I turned it off. Quickly I responded, “I promise she’ll be totally quiet as soon as I get all this done. I’m so sorry.” Folks just stared. No one said, “It’s OK” to try to comfort me. The instructor seemed to be in a very zen state of “it is what it is.” As for everyone else – I have rarely felt so self-conscious. For a brief moment, I thought about leaving. Fortunately, I decided to stay.

Our guide asked us to share our name and share a word with the group that came to mind. She talked about how everyone who had showed up for the session mattered. I nearly burst into tears. I flashed back to Miraval and what the Shaman had told me about Catherine. I thought I’d use the word “matters” for Catherine, and then, our guide talked about how each of us present in the room was there because of a miracle. She had just witnessed a birth at home and was in awe of the miracle of birth. She inquisitively pondered, “What do you think would happen if we thought of every single person we meet as a miracle?” She asked us to think about that in terms of our boss, people who irritated us, people we’d fought with recently, the slow clerk in the store, the person in the car in front of us on their phone rather than accelerating when the light turned green. “Could we see everyone we encountered as a miracle?”

Immediately, I changed my mind for the word I’d share for Catherine. “This is my daughter, Catherine. Her word is miracle,” I proudly proclaimed to the group.

We went around the circle and the instructor eventually began guiding us through the meditation. Initially, I was unsure what would happen. Sarah had even asked me, “What if she hiccups, Mom?” I figured that would be like someone else sneezing. I wasn’t worried too much. The noise and disruptive entrance had bothered me a lot. As soon as I thought of Catherine as exactly what she is – a miracle – all that disappeared and I enjoyed the experience of meditating together.

She stayed awake. She kept her head turned to the right – her sign that she is responding, listening and engaged with whatever is going on around her. She even vocalized several times, and I didn’t mind one bit. Hey, it was more reasonable than the cell phone that went off as the instructor was guiding us to imagine we could exhale out our backs. I think Catherine liked the still energy that overcame the group and perhaps was trying to tell me so.

So, on this, her twelfth birthday, I think about my little miracle girl and wish her the happiest of days – especially if she’s meditating for all of humanity. And just in case she is meditating for you, choose today to see someone, perhaps everyone, as a miracle like she is and let that be your gift to her today.

Catherine, if you really are meditating for all of us, well then, I want to thank you.

Happy 12th Birthday Catherine! I love you.

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.

Magical Experiences for Disabled Kids

May 7, 2010 by Ellen Moore 5 Comments

Wow! Some days you’re just thankful you got up and had the stuff on your calendar that was there.

Catherine didn’t have an aid on Tuesday, so I got to play that part at school. I actually love the excuse to spend a whole day with her, just the two of us. As soon as I walked into the classroom, her teacher said, “I’m so glad you’re here today. MEAC is coming!” Her eyes twinkled (literally), and I wondered what the heck was a MEAC.

MEAC stands for Magical Experiences Arts Company. They don’t even have a website. If you google them, you just see a bunch of grants they’ve won. Good thing they’ve won them, too. They are literally bringing magic to severely disabled kids. According to their brochure, they provide “interactive performances which: empower, inspire and educate children, adolescents and adults with severe multiple disabilities in a safe, nurturing environment.” They bring creative theatre programming to Level V schools and facilities. These are the places where the kids learn through the most challenges.

They hung silk fabric as a backdrop to the room. “Most of these kids can’t even see that,” I thought. Yes, even I get cynical. They wore sparkly costumes and paint on their faces. And just like a typical theatre troupe, they set the stage for a story that took us around the world.

As we visited various countries, pixie dust fell from the sky. Wind blew fiercely. Puppets started to dance. I wondered if the kids had any idea what was happening. But as I watched closely, I understood.

Catherine feels magic pixie dust that fell from the sky.

Just like in normal theatre, these elements were merely props. The actors told the real story by communicating with their audience. And unlike any I’ve ever seen before, these people actually communicated with these kids. They SAW them. They looked at each child with such intensity it was nearly uncomfortable at first. But then, my eyes welled up.

This complete stranger actually sees my daughter. She’s not afraid of the disability. She’s actually looking right at it. She’s not afraid of the little girl. She’s actually trying to find her. I’m welling up again just writing about it.

She’s watching her. She’s listening to her. She’s loving her. She’s touching her. She’s communicating with her. And Catherine began communicating back.

At one point in the performance, the fairie became a puppet that would spring to life only if the child touched her.

Catherine and the puppet start to dance.

I helped Catherine do that and the puppet awakened and wanted to dance. I moved Catherine’s arms to pull the invisible puppet strings and the two began a dance. At first, it was limited to Catherine’s upper body. I swayed with her and kept moving her arms. But then, I felt Catherine’s energy shift.

She wanted to stand.

Who is actually awakening?

The energy starts to shift.

I helped her stand, and she danced upright with the puppet. Somehow she felt this energy of having been completely and utterly seen by another. She rose with it. And she danced.

When you get the chance, I hope you DANCE!

Another little boy moved in a similar way. As the puppet moved to other children, the teacher and I realized Catherine and the other little boy were still standing – still dancing. We moved them together, put Catherine’s arm on his shoulder, held out their other hands to each other, and stabilized them for a dance.

As far as I was concerned, we were at the prom. And the theme that year was magical fairies.

Thank you MEAC.