Saturday, May 18, 2013

Children and church

When I was growing up and we, as a family, went to church, we were expected to sit quietly, pay attention until the sermon, write on little pieces of paper during the sermon, and then pay attention after the sermon.  What really happened was this.  My mom would give us each 2 "Tic Tacs" to eat (breath fresheners) before we got to church.  We would then rotate accusing each other of hiding the Tic Tacs for future consumption until we got to church.  Once in our seats, whoever managed to successfully store the Tic Tac without being caught would occasionally open their mouth to show the other 2 siblings their success.  This was the activity before the sermon.  If no one had Tic Tacs, we would try to make each other laugh (to get someone in trouble) before the sermon.  After the sermon, we would imitate the minister who was trying to sing the part at the beginning of Communion.  This was great fun!  We had to do this without being caught - again, part of the object was to get siblings to laugh, thus getting them in trouble.  The point here?  We weren't paying attention, at all.  We appeared to be 3 really good kids in church.  My brothers might have different memories.

Fast forward to my daughter going to church.  When she was a baby, we sat outside the sanctuary (the main area of the church) because if she cried, I thought I'd be too slow to get out.  As she got a little bit older, we went inside the sanctuary and she would play.  She was usually quiet.  I'm not sure if her playing bothered people or not.  Of course she wasn't participating and I remember asking the pastor of our church at that time about her inability to pay any attention.  He surprised me by telling me I would be surprised, that even when playing, she was picking up things.  He said his son was much the same way but in second grade, the pastor realized that his son (who is now an adult), had learned, by heart, all the parts of the service.  So I went with this.  He was right.

By kindergarten, my daughter wanted to take Communion.  We talked about it.  She knew surprisingly more than I would have guessed, so she started taking Communion.  And she kept playing.  At random points she would ask questions about the sermon, or about how the service went.  At some point, she wanted to follow along with the service.  Then she would go back to playing.  Via playing and awesome Sunday School teachers, she just may know more about christianity than I do.

At one point she announced she would like a part in the service, because the older kids had a part, but the younger kids didn't.  A little while after that, younger kids started saying the very ending line to the service into the microphone.  She had a part.  She kept playing. Someone informed me that since she was taking Communion, she should really be following that part of the service.  Kids don't need bulletins to follow.  She was playing and listening.  She has all the parts of Communion memorized. She learned them while playing.

Really recently, she asked to be an acolyte.  And amazingly, she got her wish.  She's pretty bold, and doesn't hesitate to ask for things.  Her friends joined her and were trained to be acolytes.  They're between second and fourth grades.  They had been playing.  Now they are acolytes.  When I started telling my daughter to pay attention to what she needed to do when she got training, she informed me that she already knew.  In fact, she informed me she had picked the robe and cross she would wear!  She had already asked the pastor what was behind the altar and he had showed her.  When I asked if she knew what things she was to do, she rattled them off - she knew more about being an acolyte than me.  "Mom, I've been watching them (other acolytes) for awhile now." 

So imagine that!  Everyone assumed she and her friends have not been paying attention and have instead been playing.  In reality, she's been playing and absorbing.  She knew what the acolytes do.

Now, if only these kids would be quiet and pay attention in church!  And while they are at it, could they follow the church service like we used to do?  I mean (sarcasm coming), then they could work on getting each other to laugh, and maybe they could find some distraction like Tic Tacs.  And then, as a bonus, they would be so distracted in getting each other to laugh, that they would learn much less about the service than if we let them play.  Excellent!  Not!!

In between services, my daughter is very comfortable with the church.  I can't chase her everywhere.  I know she has probably done more running and yelling than she should.  But then again, she and her friends are comfortable in the church.  It's home to them, or a second home.  They have each other and are good friends.  My daughter will be a serious acolyte and then change clothes and play with her friends.  I really wish I had that when I was a kid, but I didn't. If only these kids weren't running around the church and also seeing what is behind the altar, then they would be good.  They could stay with their parents after the service like we did, go to coffee hour, stay close to their parents, not talk to any kids or build any relationships.  Excellent!  Not!!

In church, we talk about people who leave in their 20s.  We talk about parents who do not necessarily come back.  What if these parents who do not come back, knew there is a place for them as well as for their kids?  What if parents knew their kids could play in church, and in playing, their kids would also be learning?  What if parents knew that church could feel like home to their kids, that their kids, because church is home, could build confidence that cannot be built the same way in other places? It's so true.

Recently I was talking with someone who has been to our church 3 times this year, and I asked the person about kids, how things are different now, how kids are playing, how perhaps kids now make noise.  His answer surprised me.  His observation was that that the adults made much more noise than the kids.  "When I go into church, I want it to be quiet.  But there are all these adults before the service starts, making a bunch of noise.  The kids?  I don't even notice them. Sure, there's a bit of noise during the service.  But it's nothing compared to the adults."

Children and church.  If we want to continue to see families come to church, especially young families with young children, we have to be accepting.  We have to know that in playing, there is learning.  We can't judge their behavior, because in it, there is learning.  We have to have church be one of the only places where children can still feel safe. 

In my mind, I think God wants children learning, involved, and feeling safe. I very much doubt God cares how the children have all this happening.  And I think God wants people to support this.

So if you do go to church, listen for those young voices.  They are beautiful.  They are learning.


Sunday, May 5, 2013

Experiencing the MS Walk (2013)

Yesterday was the 2013 MS Walk, and many people have asked me how it went.

It was the perfect day, or close to it, for people who have MS to have the walk.  It wasn't too hot; it was sunny (but there were enough shady spots and enough cooler air to make the sun ok). 

When my mom and I arrived (my daughter had a soccer game), I heard some people saying, hmm, I wonder what is happening - is it Cinco de Mayo?  That was a little humerous given that, although there were plenty of people without things like wheelchairs, there were a lot more electric wheelchairs, wheelchairs, walkers, walking sticks, etc, than you would expect at an event.

Our team was smaller this year, mainly because people with kids who usually walk had things happening, like my daughter's soccer game ("Mom, since I can't go, can you make sure to get me some free stuff?").  We found each other really easily - normally it's hard to find everyone - and we had a tent where we then hung out before and after the walk.

It actually was ok to have a smaller team for a year. I do like having a big team, but I hadn't seen the other people who came in awhile, so that was nice.  Last year my friend broke her leg in the days before the race, so this year she returned and I got to see her, her parents, and her husband (who can't always make it).  And I got to see my other friends too - those I hadn't seen since leaving my old job.  And then of course it was great to have my parents there.  Community can be big, small, or in between, and this small community was really nice and relaxed.

I started the walk a bit early so I could walk without being in the middle of a crowd, and then my dad and I waited for everyone else to reach us (where I decided to stop and wheel).  3 people then did the longer route so we all split up for a bit but then met at the tent.  I walked the end of the walk and I suppose the difference this year was that, when I crossed the finish line, I wasn't totally dead.

So that's the basic description of the walk.  It was smaller this year in terms of the number of people, and I don't know why.  In a sense that was nice because I could find people, but then again, I'm not sure if it meant a dip in fundraising. 

(Sidenote: thanks to all who have donated; if you still want to do so, here's the link to get you to the right spot for that: -------- I need less than $100 to get to $4,000 because people have also given me checks)

I did something new this year.  After the walk, I was at the Ampyra tent and then walked, on the grass, back to our tent.  I don't walk on grass -  I really don't. But the Bioness has changed that.

So many of us come together for this event every year.  It's community.  At the same time, every person's MS is different, and thus, every person, in a sense, is alone with their MS.

Right now I feel like my MS is this totally strange thing, and it's different; in fact, neurologists scratch their heads about it. I saw another neurologist on Friday and he said, like most neurologists will say, "this is very strange that you have no lesions in your brain." Yup, but I have other markers, and I have had attacks, and this looks like MS to me.  And then, Ampyra is just not supposed to work like that.  "It's a symptom-management drug, and you should also be on a disease-modifying drug."  But the thing is, I have trouble with those drugs.  Several made me depressed and gave me skin sores.  One almost killed me.  After that, who would want to try another?  I haven't had an attack in almost 3  years, so somehow Ampyra has modified the course of my MS.  But if it isn't MS, then it has modified the course of whatever I have, and the other stuff isn't worth depression, skin problems, and almost dying.  I'll never forget the last time I took the drug that almost killed me - my chest got tight; I knew this could be a side effect, but the 3 hours of shaking afterward - I'll never forget that.

Back to the walk - community - but still, everyone is alone with their own MS, or whatever it is.  For me, I lean on God then - I have yelled at God, cried to God, told God I'm not giving up and could God please get me through (fill in the blank)?, wondered why my MS seems so different, asked God what therapy I should take (God didn't answer that one - really God, could you work on giving me some answers?), gone on walks and felt I was leaning on God, sat on my deck and thanked God, took breaks during my walks and listened for God, sat on my deck thanking God and feeling tears on my cheeks.  It's not that I feel a great presence of God at all these times at all, and perhaps that's a big part of believing - handing things to God, thanking God, etc.

It all goes together...  the walk...  community...  alone...  God (for me)...

Thanks be to God.


Friday, May 3, 2013

Half full

Since I changed jobs and got new health insurance, I've been to a couple different providers.  I went back to physical therapy at the place where I got my Bioness.  The physical therapist (PT) who used to work with me there has another job, so I had a new PT.  Any new provider makes me nervous - what if they aren't any good?  It's never happened with a PT.

I went into this appointment because I'm not quite sure what to do next. I know what I would like to do next, but I don't know how to get there, and a neurologist I saw didn't exactly inspire me.  I guess I was feeling like this is it, because he said I shouldn't be continuing to get better.  You'd think it's the placebo effect, but a co-worker said, "well, that's one hell of a placebo effect!"

So I walked in and what I love about this place is that no one ever looks at me like I am a total freak... to them, I am walking in as if I am anyone else.  The PT went through my whole case with me.  The thing about the PTs with whom I have worked is this: they are always positive and encouraging - they point out the positive, not the negative.  The glass is always at least half full.

She tested me on many things, pointing out, "see, that works," as opposed to what doesn't work, which seems like the focus of many.

"See, I bend when I walk," I said.  She explained why and what kinds of things might help.

Now if you are a person without a disability, or with a disability, but you can walk and get up, do this: go get a chair.  I realize some of you may try this after reading the whole blog and that's ok, but it's just more effective if you try what I say now.

So, you have a chair.  Sit.  Good dog.  That is not very funny but I couldn't resist. 

Now, your knees should form 90 degree angles.

Now................  stand up!  Easy, right.  Sit back down.  Good dog. (not funny)

Now, move your feet 3 o 5 inches awat from where they were previously.  Now stand.  It should be more difficult to get upnow, but try to get up.  Now you are using your quads to get up, and it's more difficult.

For the past few years I've been getting up with my legs way out.  The PT discovered this for me and said "so much is involved in standing.  I agree.

So now I stand differently and know I can do it.  You use your calf muscles.  I am optimistic.  I have goals.  I know I need to go back to PT regularly.

It's all the small stuff around us, and the small stuff hopefully turns into big stuff.

It's truly a wonderful how things are working, as God smiles.