Monday, December 26, 2011

The pink sweater

My daughter was singing a brief acapella solo for the 5:30pm Christmas Eve service. She loves to sing and at almost age 9 is getting to the point where this thing called nerves is starting to develop. At home, she seems to almost always be singing something and has a great, 8 year old, voice. Our house is often filled with singing and dancing.

For this service, she was really excited to sing at first and then nerves came into play. On the day of the service, she reminded me of me, wondering why she had agreed to do this. I then tried to explain to her that if she is Ariel on Broadway, she will use a microphone and sing to many more people. Trying to reason this way never works with the third grader. "No, Ariel doesn't have a BIG microphone." Whatever. Being on Broadway, her dream, will be much easier, I'm sure. (Note sarcasm)

She was wearing a beautiful blue holiday dress and a pink sweater on top of the dress. It's not just any pink sweater - my mom, her grandma, gave it to her and she loves it. She's outgrowing it, it's looking pretty old, and at some point it may need to "disappear," but for now it keeps her safe, as if Grandma is with her when she wears it.

When I asked her if she was going to take it off to sing, she mumbled a response that included some kind of yes, but as it grew closer to when she was going to sing, I was sure the sweater would remain on. Then she would feel safe. At her age, hugs from me are no longer cool, so things like this are substitutes.

After the welcome, she had to wait a few seconds, go up to the microphone, and wait for the intro. Wearing the pink sweater, she whispered quietly to 10, glanced at me, and walked 10 feet to the microphone. She listened for the organ intro, and sang just fine. Then she returned to her seat and immediately, the pink sweater came off.

Now, if only a new pink sweater would appear... probably not, but she'll find something. And hopefully those nerves don't overtake her ever, because she really loves her performance stuff.


Friday, December 23, 2011

A Christmas Pause

Christmas is different each year...

My husband and I were talking about the Christmas right before Lori was born. We can't remember what we did or where exactly we went. We were sure it wasn't at our house because back then we had a small house, so we thought we went to both sets of parents' houses. I can't remember if we went to church that year and if so, where? I wasn't a member of the church where I am now, back then. I became a member that spring. I was still "touring churches" at that point. Starting the next year, Christmas Eve services became very important to me.

I do remember the next Christmas Eve. It was one of those rare times when my whole family was in Colorado (both of my brothers and my parents who live here all the time). That Christmas Eve, Lori was baptized (private baptism, before the service). It was important to me that as much of my family was there as possible. And everyone was there. Lori's cousin is close in age and we have pictures of them at the baptism. Most people probably forget the exact date of their kids' baptism, but we won't.

We tend to alternate Christmas visits - one year we do what I call the "tour," so we wake up, unwrap a few presents, and then do somewhat of a mad sprint to 2 other spots in Colorado which are about 2 hours from our house. I'm not a fan of the sprint, mostly because it isn't as easy for me to get around in other places. And I'm not sure everyone "gets" that, because it seems it would be easier not to have to clean your house or coordinate the food. But those things that seem easy to others - they may not be easy for me. MS gets in the way.

Last Christmas my aunt had unexpectedly just passed so many thoughts were directed to her and my cousins. As we sat in church and sang Silent Night, I thought of my grandpa - that was his favorite hymn and so it usually bring tears to my eyes and at times I get very emotional (depending on the setting of it).

This Christmas - well, it's been a strange Advent. It was mostly about me finishing graduate school. I was determined not just to finish graduate school, but to finish it well, to push all the way to the end, and to finish absolutely the best I could. That's because, I think, with many other things the goal is just to finish - just to be able to walk somewhere, just to be able to do... fill in the blank. MS can cause that "just finish it" way of doing things, but so can other things. But with my capstone project, there was more freedom - I was allowed outside any box. I finished, and I cut off so many things this fall to put everything into finishing. So I didn't just finish - it was a strong finish.

So this is sad, but in a sense Advent was in the background. The good thing is that next year it won't be! I've had this final week of Advent without school (and it seems strange!) - we have been shopping and decorating, so maybe there hasn't been as much pausing as I like to do during Advent. But I have had this week.

We'll have Christmas at our house this year. We'll go to Christmas Eve services which I love. I won't be thinking of my next class or paper. In a sense, for the first time in about 5 years, I think I can just relax this year. Maybe on Christmas, I'll finally pause, relax, and enjoy just being.

I wonder, when Christ was born, if there was any time for pausing. We should pause and await the birth. But when I think about life way back then, Mary had just delivered a baby, lots of visitors came, and so much was happening. Mary and Joseph had been traveling, so they weren't pausing. It almost seems like the mad Christmas rush, in a much different sense.

The nativity pictures make everything look so calm. I wonder, in the middle of Mary deliverying a baby, the traveling they had done, and all the visitors, if Christ came and created that "pause." It wasn't before he was born, but when he was born. Note I am not a pastor so I'm sure I'm missing some big stuff here.

But when we see the nativity scene, it seems as if it could be a pause button. Many people were moving, but Christ was calmly there, newly born. Perhaps through that, a set of "pauses" were created.

For me, maybe that pause will happen this year on Christmas. Maybe something will happen where I won't be in a rush. Maybe I will take a few moments to pause and consider Jesus, lying in a manger, calmly, entering a chaotic world as any baby might - in peace.


Tuesday, December 20, 2011


There's such a mix of things going on right now - perhaps I should write about finally finishing my Masters, perhaps how much shopping I have left, ..., but I'm feeling like talking about walking again, and Ampyra. Perhaps I sound like a broken record with this stuff, but it's really amazing to me, and continues to be so.

Before I started Ampyra, I mostly used my wheelchair and had an old leg brace so I could walk as much as I could, which was not much. I was never stable really, in the sense that I am stable now. But going back to my first leg brace which gave me as much stability as I could get...

I remember when I got the old (ancient) leg brace. I definitely didn't want it. Those things are ugly. When someone came to show me one and dove right into being excited about it, I wasn't ready. I wasn't excited. To me, this just meant things were getting worse. My doctor was there and sensing this (because he is one of the very few who can sense these things), he asked me "is this ok?" That was the break I needed in the conversation that got me out of the "deer in the headlights" moment I was having. I got the brace. I put it in my closet. I was going to fight using that... thing. Yuck.

I had more and more trouble walking and started avoiding steep hills for fear of falling. One day I got the brace out of the closet and decided to try it... yuck. But wow - amazingly, it made walking easier. I went to the hill, walking my dog, and I could walk down the hill again. So I got used to the ugly brace, and it became a good thing.

When I got my wheelchair, there was a similar process. I finally decided to use it to go into work when I was pregnant and was really afraid of falling. I sent an email to our entire department to tell them of my decision and they were very supportive. And through this, I grew to like my wheelchair - I could finally go to the mall again and it was freeing.

Over many years this was the state of things - I had the leg brace which grew old, and a wheelchair (eventually I got 2 wheelchairs because a new model was better for me).

Then came Ampyra. I started walking better. I started going to physical therapy. And my therapist looked at the old leg brace and declared it didn't fit me at all anymore. Back to the doctor I went to get a new brace and someone apologized that the brace was 9 years old - apparently they are supposed to last 2 years or so.

This time it was different - instead of looking at a brace as a negative, I couldn't wait to get a brace that would help me - but I do have to say the new brace wasn't quite as ugly. I kept going to physical therapy and started using a brace for the other leg there. It seemed to really help, and soon my therapist thought I should get a brace for my left leg. And now that times are different, I was excited! This brace would help me walk better. The yuck reaction was replaced by wondering if I could go further and faster.

The new brace definitely helps me to walk better - it helps me lift my toe. Walking feels so much smoother. It's winter, so people can't see, but I laugh about the summer. It's going to look really ridiculous when I wear shorts. But, hopefully I'll still be walking better. I feel like a bionic person. There are a few things that are a bit more difficult - getting up is one. It's hard to explain nuances of braces. With the left brace I can lock my knee; with the right brace I really can't and I've decided I should really have what I have on the left on the right as well.

So this past weekend I graduated. In the week before that, the brace was new. I was walking a ton. I walked to a concert, up a long hill. I walked, for the first time, into my daughter's school (it has a huge hill to get into it). All the kids stared and finally one asked me _what_ I was doing. When I told him my legs don't work right, he smiled and said without pause, "it looks like you are dancing."

This past weekend was graduation. I had a goal. I wanted to walk across the stage. Without the new brace I couldn't have done it because there was a huge ramp. But I did it. I did get very nervous, afraid of holding everyone up, and so it wasn't a good show, but I made it.

A long time ago when I decided not to go on another medicine, our pastor, who knew I was having trouble deciding what to do, asked me what I was going to do. I thought and then said I was going to wait. And I thought to myself that I really hoped something else came along. Well, it did. This stuff doesn't happen with everyone - waiting and then something good unexpectedly happening. But it did, bionics and all.


Tuesday, December 6, 2011

Receive, find, open, and hope...

"So I say to you, ask, and it will be given you; search, and you will find; knock, and the door will be opened for you. For everyone who asks receives, and everyone who searches finds, and for everyone who knocks, the door will be opened."
- Luke 11:9

The hymn that goes with this verse - I love it. It's really simple. It's also really beautiful.

This entry is going to use that verse and hymn; it's about education - some about me finishing my Masters after 4.5 years... one class at a time. But the verse - ask, search, knock - receive, find, open - has nothing to do in the Bible with me going through school, but this process of school - I have felt as if I have asked, searched, knocked, and then received, found, and opened. No matter what happens now, there's an open door.

In the midst of finishing this thing, I got to start on Ampyra, so I am stronger, can figure things out. Like the baby that discovers its body parts relate together - that hands go together and work together - I have found that if I think, and then believe (equally as important), and then think again, body parts work together. If one foot slides into what used to be a fall, the other foot can hold, and when I then process things right, I can tell the foot that slid to come back, and it moves. If the walker goes too fast, I can process and pull it back. None of this is automatic, but it is happening.

So school has taught so much and I have gained strength. I have a supportive family who loves me. But nothing is perfect and the whole process has not been one of joy. As I look at a fairly recent timeline, I see change. I see me saying "this is not right" and then in return, looking like I was wrong. I see being told that things that were told to me are not going to happen. I see someone thinking they were going to help by also speaking up to say this is not right. I see myself then being forced through a process to verify for others that they must be right. I see me struggling to continue to hold everything together. I see myself continuing to live with similar behavior which is being made to look justified when in reality, it is pushing me back. But I'm continuing. Others attempt payback for something I did - except I don't know what I did. But I do know that I will continue. And I know that in these very difficult spots in life, I can still move forward. I can get my Masters. I can get stronger. These are the things that matter.

People ask what is next. I have many thoughts. But what I want now are 2 things. I want family and to be a mom - to be with Lori and not into a book or paper. And I want to continue to get stronger. I want to push the limits of therapy and see if I can get even stronger and make more of those connections work. I want the top half of my body to realize it's connected to the bottom half. Then I could stand straight.

There's a third thing I have that I want to continue: hope.
"Hope prevents us from clinging to what we have and frees us to move away from the safe place and enter unknown and fearful territory."
- Henri J.M. Nouwen

That's going to help me get from what seems safe (but is not) to the unknown and fearful (which is better and probably safe).

And so with all this, I celebrate something I never thought would happen. I can't wait to cross the stage.