Just Wait and See

A blog about hope, despite the disabilities.

Why Celebrations Matter

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My brother inspired me to pay more attention to celebrations. He said, “You should keep a bottle of champagne in the fridge at all times, so you can celebrate at a moment’s notice.” That’s great advice. And I do have champagne always on hand. Champagne wasn’t the right mode of celebration this time, though. I wasn’t really sure what was.

Catherine was selected as Student of the Month in February at her school, Cedar Lane. Oftentimes, if I’m honest with you, I wonder if these little things are just to help parents feel “normal” in a world of abnormality. This was different though. The certificate even said so: For your continued independence in PE. Wow! That was real! I had seen the videos. She really was doing more and more in PE. Frankly, she’s a little athlete and quite competitive.

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I was thrilled. I gave her a big hug. I couldn’t be more proud of her and I told Sarah when she came home from school. “Guess what? Catherine got Student of the Month!” We decided we needed to celebrate. But how? Champagne wouldn’t have been right for Sarah either and it certainly didn’t fit for Catherine and this situation. We wanted to do something special for sure.

The thing that kept coming to mind was to go to Chick Fil-A. What kid doesn’t love a trip to CFA? Well, maybe Catherine. The reality was that I was having a hard time thinking of something that would be fun for her and could be spontaneous (aka: relatively easy!) for me. Ultimately, I decided it was about the celebration more than the activity of the celebration. So that was it. Chick Fil-A, here we come!

Sarah put Catherine’s medal on her and we loaded up in the van (Brian was at class) and off we went. When we walked in, I told Catherine the smells were in celebration of her. We told the woman at the counter that we were celebrating. She gave us a great big “Good job!” and we sat down at our table. Truth be told, it was a relatively calm, quiet celebration. Catherine even started dozing a little because we were past her bedtime by the time we got out of the house. I wondered if it was all worth it – getting her bundled to go out in the cold. Fighting the doors in and out of the house, the van, the restaurant. Trying to keep her awake. Trying to think of things to talk about with her to make it feel like we were celebrating. The reality is that I will probably never know if it mattered to Catherine. I think that’s OK. It mattered to Sarah and me. Congratulations Catherine! We are so proud of you.

Pushing Past ‘Crazy Mom’

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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?

How Can You Have More?

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Catherine and Sarah have been taking karate. I know! Crazy, right? Someone replied when they heard that, “Is there anything Catherine doesn’t do?” Ha! What a great question. And terrific irony. This is a story about something different though.

They take karate due to an extraordinary opportunity provided by Casey Cares and Okinawan Karate Dojo. This means the class is comprised of medically needy kids and their siblings. Sometimes, we have kids who just watch because they’re too sick to participate that week. Sometimes, they can’t make it. One has a prosthetic leg. Catherine is the only one in a wheelchair. Most of the kids don’t visibly show their sickliness. Many have cancer.

I’ve gotten to know one of the moms a bit because she has an 8-year-old daughter who became fast friends with Sarah. Her children, and there are five of them, all have an inherited genetic disorder that causes them all to have a lot of medical issues. They get it from her side of the DNA and from what I can tell, it’s a given that they’ll inherit the gene, making it about 100% chance she’ll walk a more difficult road than most moms. I commented to her last night, “You know, it’s pretty cool that you have continued having children even though you know they’re going to have so many medical issues.” I was kind of surprised I said it. Brian frequently tells me he’s surprised what comes out of my mouth and he thinks I don’t think enough before I speak. This surely would have been one of those times!

She replied so openly and with such joy about how we don’t know what we’ll get with any child and immediately pointed out that I had done the same when I had Sarah. True. We wound up talking about how no one knows what will happen when they decide to have children. Even if your kid is born totally “normal” (whatever that means), it’s possible they could become addicted to drugs, or develop cancer or have a baby at the age of 15. No one knows. And so any parent is walking this similar journey in actuality. It’s so nice to think about the many ways my road is “normal”. Believe it or not, it helps with the many, many steps of “ab-normality.” The conversation made me happy.

I woke up today thinking about our conversation and realized that having a child is perhaps one of the greatest lessons in faith that is possible for humans on the earth to experience. And then, if you choose to have another child, it extends that faith into hope. We either hope for something better – or different – or the same. We hope. As this circled around my brain this morning, I found myself repeating in my mind, “Faith, hope and love… and the greatest of these is love.” I realized that no matter how our children come to us, no matter how much faith and hope we have going into it, the reality is that with every addition to our family, love expands.

The Miracle of Meditation

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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.

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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.

The Sound of Snow

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It snowed last night. Not the two feet we’re predicted to get this weekend – just enough to cover the roads and delay schools for a couple hours. Ever since Catherine was a baby, I always wondered what her experience of snow is – especially since she’s blind. IMG_5852Sure, I’ve made certain she knows what it feels like and how it melts and that you can have fun sledding in it. I even took her skiing so she could know what that’s like. I’ve always thought she really likes the snow. What really captivates my imagination, though, is how it sounds.

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On first consideration, you might think, “It doesn’t make a sound.” There is a part of that thought that is true. It certainly falls silently. Yet, in this world where we never hear silence, isn’t that a sound? I think a blind person must be so attuned to sound that the absence of it – silence – is a welcome sound. It’s sort of like when we close our eyes to shut out the world. You can’t close your ears, so snow days bring this beautiful silence, I think, that perhaps lets a blind person shut out some of the world for just a moment.

Have you ever stopped to realize how different the world sounds when it’s snowed? There is less traffic and less activity so that creates less noise. The snow absorbs some of the ambient sounds and that reduces the overall noise level in the world as well. I think the softening of the sounds of the world is magical.

And then, it crunches. If you get enough of it to make a deep footprint, you can hear a reverberating squeak every time you take a step. I can’t think of anything that sounds like it. Sometimes, after the sun comes out and melts a little of the surface that refreezes later in the day, you get a thin icy layer that creates a tremendous crunch when you step through it as if you’re breaking into a hard-shelled candy that reveals a delicious smooth center.IMG_5868

Even when you’re inside, it’s possible to tell it snowed because it sounds different. I always try to tell Catherine when it snows so she can associate the different sound with the cold melty stuff and the slippery fun we get to have. I also want her to know the way the world sounds on those days is special, too. We have some huge fields next to our home. I’m already thinking of building snow tunnels and maybe even an igloo if it really snows two feet on Saturday. And I’ll stop several times to listen to the sounds – or rather the absence of them.

What You Can’t Choose

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I must choose for myself. I can’t choose for Catherine. There is tremendous irony in the word I chose for the year and it literally just struck me. One of the reasons I want so desperately for Catherine to be able to communicate is so she can make choices. It’s interesting when you think about how a kid learns to do that. I’m certainly not a formal expert in this subject. I’ve had no training or education on the matter. I’m simply commenting based on what I’ve observed and thought about for nearly twelve years.

For one thing, the kid has to be capable of indicating a choice. And I mean this in a physical way of some sort. They have to be able to move or make noise or have some volitional control over something in their body that others can recognize. Science and technology are working on ways for that to be expressed directly from the mind into something else. I’m not convinced we’re there yet.

If the kid is able to exercise some volitional control over something, they have to figure out that whenever they make that “signal”, something happens as a result. We call this “cause and effect” and babies learn it at a very, very young age. It doesn’t take long for them to figure out if they cry something usually happens. Then, they figure out if they smile, something really big happens. And then they figure out how to manipulate you to get to stay up late even on the night before a big test. Oh – that’s a different story!

selection-443127_1280If the kid can indicate an understanding of cause and effect, then they have to be able to distinguish between two options (let’s keep it simple) and make that volitional signal when they recognize the difference and have an opinion. That’s a lot to incorporate into the simple idea of CHOOSE.

One additional facet of this I’ve recently realized is that we have to choose to choose. That means that Catherine has to make a decision that she wants to choose and that she will choose. Geez! I can drive myself crazy thinking about all this. Or I can simply accept my new recognition that I have chosen to choose this year and I can only choose for myself – not Catherine. Not really.

We go through a goal-setting process as a family each year. I’ve written about that before. We talk about what Catherine might like as her goal. I ache wishing I knew. It’s interesting how often we can disguise a goal for ourselves that’s really someone else’s right to choose. For example, one might say, I have a goal to be a grandmother. Well, that’s not possible. Only your kid can decide if you’ll be a grandparent. I might think I have a goal for Sarah to play piano at the concert level. Wrong! Only she can decide if that’s her goal. I might THINK it’s my goal for her and make her practice so she can attain it. How often does that really work? And where is the joy in that process if I’m making her do something she doesn’t want to do? Really, best I can do is persuade and set up the environment to encourage it happen.

So, best I can do for Catherine to learn to communicate and maybe make her own choices is to set up the environment consistently to encourage that to happen. OK – that’s something I can choose to do.

Why I Choose to Choose

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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.

 

A New Start

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I don’t know when it started. One New Year’s Day I got a bug up my you-know-what and I wanted to go to the beach. I hopped online to find the closest beach to us. It had a really unfortunate name – Slaughter Beach. It was only 90 mins away though so it was perfect!

We had no idea what we would find as I packed a picnic and listened to Brian tell me how cold it would be. Yep. That’s what long underwear is for! We bundled up the kids and headed east. 

Since that day, this has become our New Year’s Day tradition followed by collards and black eyed peas. You can keep your ball drop in Times Square at midnight. I much prefer looking out across the ocean and thinking about what has happened over the past year and all the possibility that exists as we head into a new one. 

So greetings from Slaughter Beach with the very best wishes for a happy and prosperous 2016. Let’s all make it a great year!

   
    
 

Faith

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Faith is the assurance of things hoped for and the conviction of things unseen. Hebrews 11:1

May we all find faith on this miraculous Christmas Eve!

  

Winding Down and Heading Home

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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!