Just Wait and See

A blog about hope, despite the disabilities.

Can’t is a Four-Letter Word

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There are quite a few things Catherine can’t do. She can’t walk. She can’t talk. She can’t see. She can’t move very much. These are facts and her reality. For most of us, the things we think and say we can’t do are actually choices.

Think about it. Sarah might say, “I can’t do my homework.” Or I might say, “I can’t do a handstand.” Brian might say, “I can’t pick up Sarah after school.” And these are all choices. In fact, we COULD. We choose to do something else instead.

I could practice a long time and learn how to do a handstand, for example. Brian could choose to skip his class to pick up Sarah from school. Sarah could simply apply herself a little more or look up how to do her homework with the vast resources of google and Alexa, our new best friend from Amazon.

In our house, we try really hard to eliminate the word – and the even idea – CAN’T. It’s a four-letter word around here. I felt incredibly gratified when I heard Sarah correct herself the other day. “I can’t open this bottle,” she said. Then she looked up at me because we had been talking about the word “can’t” and realized she needed to add something to her thought. She quickly changed what she said: “I can’t open this bottle, yet.”

Look at how “yet” immediately changes the sentiment around the idea she was trying to express. Look how much hope it gives to the situation. And to her delight, right after she said it, she got the bottle open. Smile.

When I think of the things I think I can’t do, I try to reframe them as choices. “I can’t meet you for lunch,” becomes “I choose to work through lunch.” The reality is that I could if I re-prioritized it. “I can’t take a great photo,” becomes “I’m not satisfied with my photography, yet. I’ll practice more.”

To some degree, when we say, “I can’t meet you that day,” it’s a polite way of saying, “I choose something else instead of you.” Imagine how we’d feel to hear “Yeah, you’re not my top priority, so I choose to do this instead.” That would be a little disheartening. I understand how the word has gained power over time. I think we’ve let it go too far, though.

So, while there may very well be things that Catherine truly can’t do, most of us are simply making choices when we say, “I can’t.” And actually, we don’t really know what Catherine may be able to do in time with enough patience, persistence, hope… and probably technology! I’d like to challenge you for one day to think about this four-letter word differently. Even if you want to continue to use the word “can’t”, at least think about it in terms of the choices you are making. Replace the word “can’t” with “I choose” and see what happens for a day.

Training Nurses

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I’m tired of training nurses.

Perhaps I should view each new nurse as an opportunity for improvement. I do. I find that the perspective shift doesn’t remove the reality that I’m simply tired of it. Every time a new nurse starts, we wonder if she’s going to do a good job. And every time a new nurse starts, we have to train her on the big things like Catherine’s seizures and the little things like how I’ve arranged the clothes in Catherine’s drawers so it stays somewhat orderly. With each orientation, I open the drawer of Catherine’s dresser and show how her shirts are filed by color in an attempt to bring some order to what is inherently chaotic in our lives. Rarely are they as neat and organized as I want it done or I would do it myself. Yet I’m grateful for the help to put away her clothes, which the nurses certainly don’t have to do. I don’t feel like I can complain or correct. In fact, the order of her drawers metaphorically expresses the order in our lives – or not.

Think about it… imagine having some random person in your home every single day of every single week of every single month for the past 9 years. We didn’t get nursing until Catherine was about 3 years old, and as much as I can’t conceive how our family would function without the help, it is a significant intrusion to have to accept. Brian and I could not work and go to school without a nurse helping us. It’s that simple. As nice and helpful and important as these people are, they are not part of our family. They are more like a growth on the side of our family. For example, even as I’m writing this, a nurse sits behind me finishing her report, and I’m mindful I need to turn and get report of Catherine’s night from her.

I used to wonder if the agency trained them to think about the place they take in a family. Brian and I dampen our disagreements when nurses are here, though on occasion, they have heard us fight. He detests that and I don’t blame him.  Imagine what it’s like to want to share joy with your spouse and see a nurse first instead. Think about a nurse being the first person you see after a bad day. I remember the days after I lost my job. Our nurse knew something big was going on and I didn’t want to share it with her. That’s a little odd to say the least. I mean, she was in our home every single day for hours! And she couldn’t really comfort me yet I’m certain she wanted to make me feel better. All nurses want to help. The truth is that they wind up a centerpiece of your life, and somehow they stay on the outside at the same time.

So, when I think about training more nurses, yet again, it’s not just about the location of syringes and the physical manifestation of Catherine’s seizures. That’s the easy part. It’s about how we wind up absorbing them into the family. Even though they’re actually outside it.

We Never Know What Helps

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A couple weeks ago, I flew Southwest to San Diego for a training conference. I forgot to check in exactly 24 hours before the flight and when I finally did check in, my boarding number was C46 – clearly one of the last to board. That meant I’d definitely be stuck in a middle seat, probably in the back of the plane. Ugh! Brian kept telling me I should upgrade to A boarding. I didn’t have the same strong urge. Something told me it would be OK.

 

As I arrived at the gate and looked around at my fellow passengers, I saw a woman in a high-tech wheelchair. Once you have a wheelchair as part of your life, you start to notice the differences in them, and I could tell from this one that the woman was fairly disabled. It was a power chair, blue and I remember thinking that I hoped the airline would take good care of it. I also wondered if she were able to transfer or if they’d have to put her in the airline seat somehow. I know how we do it with Catherine. I was curious how it would work with a fully-grown adult woman.

 

I’m also always mindful that looking at a wheelchair can be viewed as “staring” and we’re taught in this county, “It’s not nice to stare.” I always hear myself in my mind justifying my staring in case I get caught with something like this: “No, it’s OK. I have a kid with disabilities. I can look. I’m just looking at your wheelchair, comparing it to the one we have.” I realize that makes absolutely no sense. It’s what I think though. It’s like I get a pass. I’m a card-carrying member of the club.

Naturally, she boarded early, and I waited my turn, resolved that I’d be sitting in a middle seat, hoping I wouldn’t be too far in the back. The middle AND the back would really bum me out because it would mean it would take a long time to deplane on the back end of the trip. And that drives me crazy.

It finally got to be my turn to board. I couldn’t believe it! Right there in row 2 was an empty middle seat with luggage space above it. I recognized the woman from the wheelchair sitting on the aisle. “May I sit there?” I asked, acknowledging the empty seat beside her. “Oh I’d love it. I’m paralyzed though, so you’ll have to climb over me. Is that OK?”

I didn’t miss a beat, threw my bag in the middle and said, “My daughter is paralyzed too. I climb over her all the time, so this won’t be a problem at all!” She smiled and said, “Oh good! I was beginning to feel like a leper. No one wanted to sit next to me.”

“Well, I do. I’m thrilled to be sitting in this seat beside you!”

We spent the rest of the flight in our little cocoon of happiness. Her husband, sitting on the opposite aisle, tried to chime in at times. I was knowingly able to help her with her bags and iPad and she gladly let me. She was happy not to be the person no one wanted to sit beside, and I was happy to be up front. She was flying to San Diego for a surgery that would attempt to give her better use of her hands. I learned her story of paralysis and the life she was learning to leave behind. We talked about possible ways she could re-engage that life, even in her different state. She had been an art teacher and couldn’t hold brushes to be able to show the kids how to paint. I suggested some alternative perspectives that she said she appreciated. I could tell she hadn’t accepted it wholly yet, and I understood. I’m not sure I’ve accepted Catherine’s situation wholly yet either. I gave her my card and asked her to email me and let me know how the surgery went. I’ve still not heard from her, though I hope I do.

Even in our short 5-hour flight, she made a difference in my life, too.

The Present of Being Present

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This morning, I read a devotional about being present. It was about not looking into the future and worrying and about not looking into the past and regretting. It framed the mystery of having hope for heaven while at the same time, experiencing heaven here on earth – in the present. As I reflected on that idea in quiet stillness, I observed thoughts about Catherine and all I wished for her and all I wished I had time to do for and with her. The reality is that she simply doesn’t get that much time from me these days. I wish it were different and I regret how it is. Hmmm… that didn’t seem to align with the spirit of what I’d read. It’s amazing how active the brain becomes when one is trying to be still.

Sometimes Sarah wakes up super early and comes into my bathroom where I typically sit to have this stillness time. I sit on a small rug beside the shower. OK – it’s the bathmat! Let me not glorify it needlessly. Usually, when she comes in and sees me in quiet stillness, she does what she needs to do and quietly closes the door behind her. I’m aware of her, and I don’t engage with her as I continue to practice my focus on God. Today, it was different.

Today, she came in and I could feel her near me. I didn’t open my eyes. I could sense her all around me as if she were looking at me and wondering what to do with me sitting on the floor. I had a vision of a mime looking intensely at an object and moving exaggeratedly all around it. I wondered what Sarah was thinking and what she would do. Amidst all that flurry, I did finally think about God’s call to be present. And then, I was surprised to hear a thought spiral toward me – “Whenever two or more are gathered in God’s name, He is present.” Keeping my eyes closed, and trying to stay in the present, I reached out my right hand and turned up my palm. I just left it there on my knee. It didn’t take even a second and Sarah put her small palm inside mine.

No words.

Just a small, still palm, nestled in mine while I tried to stay focused on God. I realized this was being present. This was the moment. There was no “what next?” There was no regret. All the “to do’s” dropped out of my mind. I felt God surround us and thanked Him. I even turned up the corners of my mouth and smiled a bit. Sarah began to squirm her little hand – just a tiny bit. That woke me to the present of that moment. And I felt her move her hand again, only a little. And then I recognized that moment. Each and every single moment was unique and an opportunity to come back to being present.

When I went downstairs to put Catherine on the bus, many moments had already slipped by in the hustle of making lunch, the quick filling of a cereal bowl and covering it with milk, the auto-pilot straightening of the counter. Those moments went unnoticed in a blur. When I gave Catherine “hugs and kisses to last all day,” just before putting her on the bus, I looked her in the eyes. I rarely do that. For some reason, I looked in her eyes and noticed they were red. They were open. I thought for a split second, I wonder if she can see me. And we had a moment. God was present with us in that moment, too. Maybe I don’t need to do more with Catherine and try to fabricate the time for it. Maybe I don’t need to regret all the things I’m not doing. And maybe I can rest easy and stop planning all the things I wish I were doing. Maybe I simply can recognize these moments that we already have. There are lots of those. Maybe I can appreciate the stillness that is already there – if only I am present.

Writing to Be Cool

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If I don’t write, does that mean I’m no longer a writer? And why haven’t I written in four months, especially after I made a commitment to myself and to readers that I would? Well, for one, we’ve had an amazing summer and I’ve been soaking it up like the sunshiny rays I don’t want to disappear on this final summer weekend. And for another thing, I’ve started a business that is keeping me very busy with an obsessive all-consuming kind of focus. Those are just excuses though, aren’t they? The truth is that if I wanted to write, I would be writing. Right? And since I’m not writing, I must not want to write. Is that right? Or is that wrong?

I actually do want to write. I don’t feel like I have much to say right now, though. I don’t want simply to recount the past 4 months, amazing as they have been. I remember wanting to write about Catherine going to camp by herself for a week and realizing I had no idea what to write because I had no idea what happened!  And I don’t want to write about sadness or loss or frustrations or any of the other things I think about related to the disabilities of our lives. I wrote a post about nurses and training them and I never posted it. It sounded too negative and I don’t want to sound negative. That’s not the point of this blog.

I’m working on redesigning this blog so it looks more current. I’m actually working with a woman in South America and have spent countless hours picking out themes that might work so she can make the transfer of all these thousands of words into a format that is more readable and represents Catherine better. Maybe that’s what’s been holding me back… I think I can reflect Catherine better.

We went back-to-school shopping recently as virtually every other family in America does. Sarah proclaimed, “Catherine needs to look cooler!” And so we set about to find some clothes that would make that statement a reality. We got her a jean jacket and vest and some cool skirts. And as she headed back to school, she certainly looked cooler. She even looks cool heading to church! IMG_0012So stay tuned as this blog gets ready to transform and look cooler as well. And I’ll work a little harder at writing – hopefully to reflect Catherine as the cool pre-teen she is.

What Dishwashing Taught Me

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“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!IMG_3097

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.

What is Normal?

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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.  It 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 on Streets of Gold

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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.

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?