The Piano Guys

Years and years and years ago when Kalen and I had been married for less than a year and were still living in Utah and attending Utah State University, the Institute of Religion put on a concert featuring a talented pianist named Jon Schmidt.  The cost for tickets was $1 a piece so we figured we'd go and check it out. Well, we were blown away by the concert!  We ended up going out and buying his two cd's and practically wore them and all of his subsequent albums out over the years.  Then a few years ago, I was listening to a cd of another talented pianist, Paul Cardall who had a cellist on his album accompanying him for several songs.  It was beautiful, so I looked up his name and found that Steven Sharp Nelson had a cd of his own.  So we added that to our collection.  Then not long after, Jon Schmidt and Steven Sharp Nelson teamed up to do some commercials for a piano store owned by Paul Anderson and they posted them on YouTube.  We, along with millions of other people, had fun watching those videos go viral over the next while.  We have followed them as they put out their first album and as they signed on with Sony and produced more albums.  When they announced their concert tour we found that one stop along the way was going to be in Royal Oak over near Detroit.  We were all dying to go.  The tickets were not $1 anymore. Not even close.  But I won the March Madness tournament again this year and could choose our fun family activity and we figured since we weren't going on any trips that summer, that we could take a chunk of our tax return and splurge on something that meant so much to our entire family.

We bought the tickets in April and shortly afterward, the entire concert sold out.  We marked October 16th on the calendar and waited.

Finally the day arrived!  After school we all donned our matching Piano Guys t-shirts that we had each received for our birthdays/Christmas and headed to Royal Oak.  After parking, we joined the long line of people that stretched completely around the building and waited for the doors to open.  

Once we got inside, we were thrilled to find that we had the best (cheap) seats in the house.  The place had the oddest floor that actually slanted backward so that those in front were elevated and those in back couldn't see over all the heads in front of them. Luckily, we had gotten a bench seat in the back of our section.  When we sat on the seat, we could see nothing.  But the back of the bench was actually a concrete section where the floor rose to the next level.  On that section was where the sound and light table was.  We discovered we could sit on the concrete section in front of the table without blocking anything and we could see everything up ahead perfectly.  The best and most exciting part of our seats was that Al VanderBeek (one of the behind the scenes Piano Guys) was running the table.  Spencer kept saying, "I can't believe I can see Al's shoes!"  And during the concert, Al and Kaya had a fun game of peek-a-boo.

The concert was beyond amazing!  They put on an incredible show and did several encore numbers for the cheering crowd. I don't think anyone there wanted it to end. When it finally did, we really hoped to be able to meet them and maybe get an autograph or photo or something.  Apparently so did everyone else.  But after a few minutes, someone came out into the entry hall and announced that they weren't going to be able to come out after all.  A lot of people left but there were still people staying.  We asked the guy selling merchandise, and he told us to stick around.  I guess the announcement pared down the crowd enough that it made the meet and greet more of a possibility.

Sure enough, everyone lined up and shortly afterward, they all came out.  We were way in the back of the line so we knew we would have to wait for awhile.  We were willing, although it was a school night and we still had a nearly two hour drive back home.  But after about thirty minutes or so, they pulled all the families with kids up to the front so that we could get through before it was too late.  It was so much fun to meet them.  When Al saw Kaya he said, "I remember you!"  They had a cute conversation which had Kaya giggling nonstop.  We told Jon about the first concert we had been to and laughed at how far he had come.  And Kalen even asked Jon about his daughter Sarah (who everyone teases Kendall about--Spencer even used to pray that Kendall would marry Sarah Schmidt) and Jon told Kendall, "Who knows?  Maybe someday I'll be your father in law!" They thought it was awesome that we all had their t-shirts (and the merchandise guy even remembered our order because he said it's not everyday you get an order for 7 shirts). It was fun to meet them.  A bit rushed of course, because of the waiting crowd but they did sign autographs and posed for a couple of pictures.

The Piano Guys: Jon Schmidt, Paul Anderson, Steven Sharp Nelson, and Al Van Der Beek

It was such a fun night and worth every dollar.  We told the kids that this was a once in a lifetime event for us, but I think we are all hoping to be able to go a few more times down the road.

Good One, Lifetouch...

Lifetouch photography's slogan:  "This year's memories captured forever".  Looks like we're in for one rough year...

Sports

With the start of the new school year, things also got busy with sports.  This year Taylor was finally, FINALLY convinced to try cross country.  He wound up really enjoying it and getting to know all of the supportive guys on the team.  I think it really helped him to make some friendships in the new school early on that have really helped him feel good about his senior year being in a new school.  He did great and pretty much continually improved his running times with the exception of a brief spell of shin splints that slowed him down for a bit.  I think a part of him realizes now what he missed out on all those other years that we and others were trying to get him to do cross country.  And looking at how much he improved from his first run to the last, makes me think he could have done some amazing things if he has started out his freshman year.  Oh well.  At least he did it this year and had a great time.

And all four of our younger kids played soccer this fall.  Keeping up with five schedules was a huge challenge.  But it's always fun and at least we had a fairly mild fall so we didn't have to sit out there freezing every Saturday morning like we have some years.

Kendall played on the U14 team which wound up combining most games with the U12 team.  He usually played goalie for half the game and then played offense or sometimes defense for the rest of the game.  He'll be able to play one last season in the spring, we think. And then he's thinking he might like to either help coach a team or else take the referee training and earn some money being a ref each week.

Lynnsey played this year on the U12 team so she played a lot with Kendall.  I felt like she didn't get to play as much as I would have liked. When they combined the two teams it made it so they had to keep quite a few players on the sidelines.  It seemed like they would put her out there on the field and just when she was finally getting into her groove and feeling more comfortable, they'd pull her out again.  She is fun to watch out there and came SO close to scoring a few goals this year.  Unfortunately, I never could get a picture of her.  The ones I took of her wound up either blurry or with the camera delay, she had moved out of the frame or behind other players before the picture took.

Kalen was bumped down to the U8 team which Spencer just barely qualified for with his birthday being a day before the cut off.  We were glad he got to stay with the smaller and younger team for a bit more training before having to move up to the U10 teams.  Some days he really loved it and others he just wanted nothing to do with soccer.  (Usually when the soccer field was wet which got his socks wet, which of course prevented him from walking properly, much less running after a ball...)  He did score a couple of goals this year which totally made his game!

And finally, at long last, after years of trying to keep her off the field at her siblings games, Kaya was finally able to join her own team.  She had a great time and it was really fun to watch her trying so hard out there.

It was a fun season and all four kids are looking forward to spring soccer in just a couple of months!

September

As always, once school starts, things tend to get crazy.  Between soccer and homework and my babysitting jobs resuming we were busy.  This year I agreed to take on another little girl mostly because I thought that one of the boys I've been babysitting for the past two years would be heading off to preschool so I would only have him on Fridays.  That didn't happen.  After a nightmare of back and forth with the preschool teachers and the program that funds the preschool, he didn't get in.  It's the same preschool that all of our kids attended and I have had nothing but praise for them.  But this year, the powers that be must have someone new in charge.  A big part of the program is based on a family's income.  But other factors also came into play and then if a child didn't get in right away, there was always a waiting list.  Eventually most kids would be admitted. We'll with only two kids in the family and both parents working, they didn't meet the financial qualifications.  And it seems that the program didn't place much or any emphasis on the other factors involved this year.  And then instead of creating a waiting list for potential students, they made the school district try to recruit more kids with financial need.  Almost daily the teachers would petition the administrators to let them admit the other kids who didn't initially qualify.  But they were always told no.  That they had to exhaust every other possibility first.  So while they were exhausting possibilities unsuccessuflly, the preschool classrooms had plenty of spots available for other children they they couldn't seem to find while there were plenty of other families who had gone through the registration process already and would have jumped at the chance to take one of those slots.  It makes no sense to me, since the program gets its funding from having bodies in the classroom, why they would not allow a child who could benefit tremendously from a preschool experience just because their family makes too much money.  Ridiculous. A's parents looked at other options but because he works they both work in other places from where they live, they were unable to find a program that would fit their schedules or who were even accepting new children.  

So anyway, it has ended up that I still have all of the same kids from last year plus this new 3 year old girl this year (who happens to be the daughter of Spencer's third grade teacher).  My hands are full and my days are exhausting.  But they are cute kids and it helps to pay the bills for which I am extremely thankful.  It's so weird to me to not have any of my own children at home during the day anymore.  

Anyway, it was a busy month of adjustments and getting back into a routine.  And as usual we had ups and downs.

One day after two of the babysitting kids left, I took the two remaining kids out onto the front porch so they could eat a snack and blow bubbles until the bus arrived bringing our three youngest plus the little girl I babysit after school.  As the bus pulled up at the end of the street I noticed the sky was getting dark and some clouds were rolling in quickly.  Just as the kids were approaching the porch I looked down the opposite way to see Kendall walking home.  He typically walks to my mom's house when she's in Utah so that he can get her mail and water plants and then he walks home after that. But he was home earlier than usual.  He explained that he had started walking there but then realized he had forgotten to bring her key that day so he had just switched directions and come home.  

Right after that, the sky went almost black and the rain started falling and the wind picked up.  It was crazy how fast it came on and I think we were all mesmerized for a minute watching it come in.  But then the lightning started flashing and I told everyone to quick get inside.  By then the wind and rain were going so hard we couldn't see much of anything and shortly after getting everyone inside, we heard this massive crack and felt a thud that shook the house.

I glanced out of our big picture window and could see that a giant branch from our tree had fallen into the yard.  I couldn't tell much of anything else because it was hard to see.  But the whole thing was over in just minutes and then we could see just how big a branch it was.  It was massive.  A tree size branch.

The storm had hit pretty much just the south part of town.  They later determined it was caused by "straight line winds".  So not a tornado, but devastating none the less.  Trees were down all over and some had fallen on homes or vehicles. Victory Park had several trees down. The nature center nearby lost about a thousand trees and had to close down a lot of their hiking trails until they could clear all the safety hazards.  (We still haven't been back yet because it was closed for pretty much the whole autumn but I'm sure when we do it will look a lot different!)

The miracle for us was first that Kendall had left his key.  That delay of going to my mom's would have meant that he would have been caught walking in that storm.  Luckily he was home just in time.  It was also a miracle that the branch fell exactly as it did.  A little further west and it would have crushed our white van (which might not have been that bad of a thing now that I think about it!) but a little further east and it would have taken out our neighbor's garage.  As big a pain as it was to clean it up and clear it out, it could have been much much worse. So we were thankful that we got off with as little as we did.

Just a little perspective to show just how massive the "branch" was.

Thankfully we had friends and neighbors who pitched in to help us clean up the mess. (With one additional trial of Kalen catching his finger between a piece of wood and the wood splitter and requiring some stitches and a lot of pain...) And now we have a bunch more wood in our wood pile!

We got to participate once again in our annual Festival of the Forks.  Taylor had a cross country meet that morning so he missed the parade.  But the rest of the kids participated in the parade.  Kindergartners needed a parent to walk with them and Kaya chose Kalen, so this was the very first year that I sat on the sidelines alone to watch the parade!

Kendall and the rest of the middle school band did a fantastic job!

Lynnsey and Spencer rode the Albion Youth Theater float. (Lynnsey is wearing the yellow mask and pink boa and Spencer is just below her in the sombrero.)

And Kaya walked with her class and the rest of the Albion Wildcats.

Sometime these two actually get along with each other!

We enjoyed a fun day with lots of sights to see and food to sample.  Always the yummy food!

Taylor has been participating more this year with school events including MHS spirit week.  He had fun putting together costumes including  a toga and 80's day. (I loved his 80's day costume!)

Our tiny garden had a plentiful tomato and poblano harvest this year. We enjoyed lots of salads with the tomatoes and spicing up our dishes with the enormous peppers.

The Past Comes Back to Haunt Me

This may not be the best day for me to write this post since it's a pretty bad day and I'm feeling pretty negative about this whole thing.  I thought about not writing it at all but since this blog has become basically my journal, I decided just once I would talk about this issue.

After I had my surgery to correct the issues I was having with Hemifacial Spasm, I mentioned that I was still having a few residual twitches.  That actually continued off and on over the next months.  I mentioned it to the surgeon who said it is very common for the nerves to take a long time to repair themselves after years of irritation and not to worry about it because he felt confident that it would eventually diminish and finally go away completely.

It didn't.  In fact, as I approached the year mark of surgery last June, I noticed that the twitching was actually becoming more frequent and more noticeable.  I mentioned it again to Dr. Casey who finally expressed some concern and admitted that it could be a problem.  So he wanted me to get another EMG of the face (aka extreme torture).  The guy who did it before was no longer in state so it took some time to locate another neurologist who could do it.  Finally I was able to schedule an appointment with a doctor in Kalamazoo in August.  It was right at the beginning of the visits from the family but I took the afternoon and went over.  The test was absolute agony.  In addition to the shocks to both sides of my face, they used a needle inserted in various spots to get a more accurate reading.  It was awful.  And the results were even more awful.

Before the test, the doctor expressed his concern about putting me through it when it didn't appear that I was having any symptoms and I looked normal to him.  But I told him I wanted an answer one way or another and since this was the only way to get it, I was willing to do it.

At one point during the test, the doctor actually took out his phone to take a video of the results he was getting, saying he couldn't believe what he was seeing.  He actually said "based on this test, I can't believe your face is as calm as it is.  These numbers are off the charts." (Yeah, comforting right?)

So basically, the spasms are back.  And both sides remain affected.  For whatever reason, my right side is much, much less symptomatic.  I only have occasional twitching and a slightly drooping eyelid on that side.  My left side, the side that I had surgery on, is the one with most of the spasms.

I left the appointment calmly.  I washed the goop off my face in the restroom and went out to the car where I called Kalen to tell him the news.  And that was when I completely broke down.  I can't remember the last time I have sobbed so hard.  And I can't describe how awful this news was to me after going through so much with that surgery in hopes to put this behind me.  I don't know how long I sat there trying to pull myself together enough to drive home.  But finally I did.

I knew I needed to put on a happy face for the family reunion.  It actually was the perfect distraction while I waited for the results to be sent to the neurosurgeon to review.  Being surrounded by family was the perfect diversion.

When I checked in with the surgeon he said he still hadn't gotten the EMG report.  And about that time I got a call from the doctor who did the EMG asking me to come back to repeat a portion of the test that hadn't worked right.  And by "a portion of the test", I think he meant "most of the test" because I went back and endured another hour or more of needles and shocks.

And still the surgeon didn't get the report.  There were fax issues and computer issues involved but basically it was weeks before he got it to review.  And when he finally did, he concurred that the condition has returned.  In consulting with some other colleagues, they think that I may be one of the rarest of the rare who have bilateral hemifacial spasms and that they are likely originating from deeper in my brainstem.  So what that means is not only do I have the condition on both sides of my face, but the source of the spasms is possibly in a location that would make my condition inoperable.

Unless a new miracle is developed (yes, please!) my only real treatment option is Botox injections into the location of the twitches.  I'm holding off as long as I can because the injections, while usually effective at first, tend to require more Botox and more frequent injections over the years and can cause my face to become weak and droopy.  Nice huh? I can go from having a face in spasms to looking like a stroke victim.

Right now the twitching is still not super noticeable to others unless I point it out.  Which I don't.  But I am alarmed at the rapidity with which it is progressing.  After that first year with only minor twitching here and there, I am now having daily and near constant twitching of some part of my face or other.  There are spots in the crease of my eye, my eyebrow, the side of my nose, my upper lip and just below my lower lip and also my outer cheek just below my eye that are all affected now.  At the risk of sounding melodramatic, each new twitch seems to send me into the depths of despair all over again.    I'm sure it seems a bit crazy to be grieving like this over a twitchy face when there are other people with bigger and much harder burdens to deal with in the world. I know that.  I know that there is always someone out there who has things worse.  But for me, this is awful.  For me, I would give just about anything to not have to deal with this.  And for me, this is the biggest burden.

I know it isn't noticeable now.  But it will be one day.  I know I am not disfigured by it now.  But I will be one day.  I know I can still carry on a normal conversation with someone now without worrying too much about what my face looks like to them.  But one day people may be uncomfortable speaking to me because of what my face is doing.  Or I will be uncomfortable speaking to them because of my fear of what they are thinking because of what my face is doing.  Anytime I look too far in the future, I wonder how bad I will be at that point.

I've heard it said that if we were all to put our trials in a big pile, we would look at what everyone else is dealing with and take ours back.  But I'm pretty sure that I could probably find something else in that pile that I would rather deal with!

I know we are given challenges to overcome in this life and I know things can be difficult.  I am trying really hard to keep sight of the bigger picture.  I'm trying hard to learn something from this experience.  And I am hoping, always hoping for a miracle. I keep hoping that there will be a new procedure developed that will cure it or that any number of the priesthood blessings I have been given will be the one where I finally have a promised healing.  I read stories of Christ healing people in the scriptures and in my mind I can see a day where He will put His hands on my face and I will finally be free of this.  I know that can happen someday. But I was watching a little YouTube clip today where a mother was talking about her daughter passing away from cancer.  People had told her daughter that she was a fighter and that she was strong and would be the miracle who would beat that terrible disease.  But the daughter said to them that the real miracle isn't beating the disease.  The real miracle is being able to yield to the will of the Lord no matter what the outcome may be.

I know I need to accept this and learn how to deal with it.  I truly believe that before this life I agreed to take on the trials that I have had and will continue to have.  I need to have hope in the future while being able to count my blessings in the present.  And I really am blessed.  I have a wonderful husband and five beautiful and amazing children who bring me so much joy.  I have the gospel of Jesus Christ.  Jesus, who understands like no one else what I am going through.

The same day that I learned for sure that this condition had returned, I came across a quote by Thomas S. Monson that said of the Savior: "He will lift you and guide you.  He will not always take your afflictions from you, but He will comfort you with love through whatever storm you face."

Today has been a really, really hard day.  I know I will have many more and possibly even harder days than I can even imagine.  But I know that I am not alone in this struggle.  I just need to remind myself of that pretty much every step of the way--or every twitch of the day in my case. :)