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What is Normal?

Today, I sit at my computer grateful to get back to my routine of writing blog posts after our recent medical mayhem. It’s ironic that I’m not quite sure what to write about because it’s obvious I should write about Catherine coming home from the H. Several have reached out to ask how she’s doing and I feel nearly guilty that I haven’t publically let folks know she came home and is doing great. I don’t write this blog primarily as a chronicle of her life though. I write it as a source of inspiration (a little therapy for me!) and yes, that inspiration comes most frequently from her life.

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It’s so weird how quickly we move back into our routine and leave out the part where we came home from the H. I oftentimes think that just goes to show how “normal” it is for us to come and go from the H in general. But that’s not normal. And it’s certainly not normal to be in the ICU. And it’s certainly not normal for your kid not to be able to breathe. So why does all this feel normal to me?

I guess it’s because “normal” is all about what you’re used to experiencing routinely. That suggests we can create our own “normal” by upping the frequency of our experiences and making deliberate choices about them. For example, if we want trips to the beach to be in our realm of “normal,” then we choose to go to the beach frequently. If we want a life of adventure to be our “normal” then we need to create that. If we want TV and computer games to be “normal” then we allow it. We can create our “normal” experience to some degree. And “normal” is different for every person and every family.

And then there are things and situations that we’re given that we don’t particularly choose or create that become “normal” for us. I didn’t choose for Catherine to come in and out of the H more frequently than other kids. I do choose my attitude about it. I had a hard time with this most recent H visit because I kept thinking her pneumonia wasn’t a big deal. I kept thinking she’d be fine and we should be home. After all, we have oxygen and nursing at home so we can manage things in our own home rather than having to stay at the H. In fact, the very reason we have those things is to be able to treat her at home because it’s less expensive than a trip to the H. Like most everything else she’s encountered, I was confident she’d pull through it. Then the days turned into a week, I started seeing little to no change in x-rays, and I realized that this hospitalization wasn’t “normal” – not even for her. My confidence faltered. ┬áIt ceased feeling “normal.”

“Normal” comes when an experience is routine and we accept it as such. It’s only “not normal” when we fight against it or define it as rare. So, I eventually chose to accept Catherine’s hospitalization rather than fight it and we eventually came home, which isn’t at all rare – it’s happened every time so far (thank God!). And that’s what enables me to think of her hospitalization as “normal” – maybe not normal for most. Thankfully, it is definitely normal for us.

 

I Ran

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. 

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.

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?

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.

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

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.

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