Wonder

 I have had a few people ask me what my opinion of Wonder is.  So instead of writing a lengthy post on FB, that would be a way too opinionated for some I thought I would express my thoughts here.  Also, all the grammar nazis most likely won't be checking this out.

Hollywood has a wonderful way of giving you a warm and fuzzy feeling even when the subject isn't warm and fuzzy.  They tied everything up with a nice beautiful bow at the end.  I walked out of that theater wondering where our Summer and Jack were.  Even Miranda was amazing compared to some of the friends that have crossed our path.  It isn't very often that you run across an adolescent that takes the time to see the error of their ways.

Before I get too negative let me first express that I am grateful that movies like this exist at all.  It does help raise awareness that things need to change.

Our situation is much different than August as well.  He has the advantage in the fact that he is intellectually comparable to his peers.  Ellie is at a disadvantage there.  She can't come up with an impressive science fair project.  She can't say a quick-witted joke and make the other kids laugh.

Ellie is also different in the fact that Down Syndrome is widely known.  This is an advantage for her.  August has a major disadvantage in this department.  Most people don't think that they will get the plague by touching Ellie.  (with the exception of her calcinosis but that is a whole other issue)

There was a part where August is explaining the way everyone looks at him.  I know that look all too well.  It is so true that most adults try to smile politely but children all too often show the true way that they are feeling.  It breaks my heart to walk through a group of people and see the crowds part or the stares of disgust.  If I am PMSing watch out.  I have a hard time biting my tongue then.  Most times I can convince myself that it is ignorance and if they only knew they would be more kind.  The children staring will happen.  My children stare too.  My kids see someone of another race and stare.  When it is different this will happen.  I would hope that anyone that has a child that stares at Ellie would come and talk to me.  Ask me about DS.  Ask me to explain it.  Let Ellie have the opportunity to say hi.  The less we fear difference the better we can embrace it.

Let me take you back to the beginning.  Down Syndrome has not been my entire life.  I had very little exposure to it.  I was just as ignorant as the next person.  This is a world I was thrust into unaware of the beauty that would come from being in it.  Ellie has enlightened me in so many ways.  Where I was once ignorant I now see the worth of these amazing souls.  She is a blessing in our home.  She teaches peace, tolerance, love, compassion, empathy, and forgiveness.  These are all the things that the world is sorely lacking.  I haven't met a person that Ellie doesn't love.  That is why when someone doesn't see her worth I KNOW that it isn't because they are bad, it is because they are ignorant.  There are a few bad seeds but that is the exception, not the rule.

Julian is a very typical kid.  We have had plenty of Julian's in our lives.  Once Julian was taught the error of his ways he learned.  And that is a beautiful process.  And one that I have been able to witness first hand.

Where I struggled with the movie is the Jack and Summer characters.  Maybe I struggled because we so desperately want a Jack or Summer for Ellie.  Ellie doesn't ever get asked to hang out.  She so desperately craves this too.  She has a sweet young woman that comes to our home every Tuesday and helps her with her reading and plays with her after.  It is the highlight of Ellie's week.  If we ever bring this sweet girl up Ellie beams with love for her.  We couldn't be more grateful for her.  And so when I write this I hope she knows that everything she has done for Ellie is noticed and very appreciated.  And we love her for it.  I just wish though that Ellie had a friend that would come and pick her up and let her come hang out with her and her friends.  I had hoped when she got older that the girls in our ward would maybe take her under their wing and let her "tag along" with them.  Yet, here we are... no phone calls, no invites.  And yet who am I to point fingers because my own kids don't do that for the special needs kids in our neighborhood.  I would love to figure out a way for this to change.

The storyline that most got me though was Olivia.  I do think that when we have a child with health issues they tend to overshadow the one that doesn't take the time.  Ellie has had 13 surgeries.  We haven't had a year yet without one.  This takes its toll on a family.  especially children who need so much.  We try so hard to not make Ellie's medical problems consume us but it can be a challenge.  Just the other day I looked down at her feet and noticed that that DAMN calcinosis was back.  That day unaware that it had altered my mood, I snapped at everyone.  About two hours after seeing it, I snapped at Emry.  I turned around and went to my room and broke down crying.  I hadn't even realized that for the past two hours I had been so upset about her feet that I was taking it out of everyone else. As much as I try to not let her medical issue affect me they do.

The other storyline of Olivia is a beautiful one.  Ellie's best friends her family, her siblings, her cousin, her Emma.  Emma sometimes will take Ellie with her to hang out with Emma's friends.  This is amazing to me.  I tell my kids that we are a family for a reason and I see time and time again the way that they pull together for Ellie.  Emma will nurture her and love her.  Elsie will defend her to anyone that looks at her sideways.  They all band together for her.  And so the lesson I have learned is friends will come and go but your family is forever.  That is where our strongest bonds should be.

I have had MANY people say to me  "It's a good thing that she doesn't really understand when kids are making fun of her."  This kills me.  Grown adults thinking that Ellie wouldn't understand.  That somehow because she had DS she no longer has feelings.  People...SHE UNDERSTANDS!  Her heart is just as fragile as yours.  The difference is that she will still love you even if you don't love her.  That is why she is amazing.

I could go on and on and maybe when it isn't 1:30am I will write more.  But it is true what they say in the movie “If every person in this room made it a rule that wherever you are, whenever you can, you will try to act a little kinder than is necessary - the world really would be a better place. And if you do this, if you act just a little kinder than is necessary, someone else, somewhere, someday, may recognize in you, in every single one of you, the face of God.”  In her face, I have seen HIS love for us.  

Our family motto is a quote from President Hinckley "Try a little harder to be a little better."  This is all that we can hope for.  Down Syndrome just like any special need is not who the person is.  Look beyond the face, and see the true beauty that lies within.  It is then that we will have a kinder more gentle world.

September 4-10. 2017

Cross Country Road Trippin': Nauvoo Day 1

Cross Country Road Trippin': Mt. Rushmore

I woke this morning and hurried off to WalMart to get food for breakfast.  I was able to make it back without the kids even knowing I was gone.  I woke them all up and we hurried and packed up, ate, got ready, and set out for Mt. Rushmore.

Keystone is a cute town that reminds me of an old Park City. Its got a street like Main St.  It had camping and cabins all over that you can stay at.  It has all the things you need set up in the Black Hills.  It is absolutely beautiful there.  One of my most favorite parts of the drive was this beautiful bridge.

We all got so exctied when we were getting closer to Mt. Rushmore.  If I remember correctly JJ was the first to see it.  It was so exciting.  We all had butterflies in our stomachs.  It really was so fun.  Once we all saw it we were all so impressed.  It was much bigger than me all expected.  It is definitely a once in a lifetime kind of place.  It is amazing that we can create things like this.  

We all wished that Jeron was here to see it.  We will have to bring him back someday.  

It was cool how they have all the state flags and the order in which they entered the nation.   

 Here is the Utah pillar

 Even if this was as close as you could get this would have been pretty awesome. 

  

 Here is where I decided to go back and get Ellie a wheelchair.  I had to go to the car to get my wallet even.  Ugh.  It was a good decision though, because there was a lot more we wanted to explore.  I think I failed to mention that this was $10 and it is an annual pass.  Well worth it.  We must have come when there was some kind of biker rally because there was bikers everywhere.  

 We met a sweet couple from Maine.  They were so excited to hear we were going to come visit.  I told them we were only going to Portland though.  They replied with "Oh, then you're not really going to Maine."  haha.  They were sweet.  Told us to by a cheap lobster roll because they all taste the same.  They are also served on a hot dog bun.  Anything else is a fake.  Funny thing, they had just come from Utah.  They said it was one of the cleanest cities they have ever seen.  The loved what they saw and want to come back.  Someday.  We loved their thick accent.  My favorite part was when they told us to take the "Downeaster" train.  We repeated that so many times on the trip.  "Take the downeaster" 

 They had teepees set up to see how the native americans lived.  

  The weather was a beautiful 78 degrees.  It was perfect.  The hills were so pretty.  Elsie put one of the rocks in her pocket and later that day she pulled out what looked like fairy dust.  They literally sparkled.  We loved it.  

  Before we came down here we watched a video on how it was made.  It was cool when you got closer and could see some of the ways that things were done.  The dot in the eye is taller than me.  

 When we left we saw this awesome view of George so we had to stop and take a pic.   

 One of the thousands of bikers made it in my picture.  

It is time to say goodbye to Keystone.  I wish we had one more day or even week to spend here.  It really is beautiful.  But we must head out and move on to Illinois.  Nauvoo to be exact.  We are all so excited for this portion of our trip.  

South Dakota really has nothing after Keystone.  We drove for hours without seeing a single tree, shrub, anything.  The Badlands are the worst.    It is so bad that there is this trading post Wall Drug that has signs every 500 feet telling you what there is at Wall Drug.  It gets so crazy that you have to stop.  I mean it must be amazing.  So of course we stopped.  Emma said it felt like we had just entered the twilight zone.  It was weird.  It is an old trading post that now has every kind of store you could think of, all of which you don't need.  It reminded me of a really big state fair.  With the shops set up but this was actual brick and mortar shops for things you'll never buy.

Here the girls are at the toy store. 

Cross Country Road Trippin': Heading to South Dakota

We got up and headed to South Dakota, Rapid City.  As we left Utah we quickly realized just how boring Wyoming is.  I drove about 3 hours and started getting pretty sleepy.  I traded with JJ.  He drove for about 30 minutes when the freeway we were on going 80 mph went through a town and dropped to 30 mph.  He was slowing down when all of the sudden I heard sirens.  I asked JJ "does your song have sirens in it?"  Sure enough, there was a cop behind JJ.  He immediately pulled over.  JJ was given a ticket for speeding.  He was really nice to JJ.  He said he could tell he was a nice young man but he needed to teach him that this was not okay.  Personally I think he was a schmuck.  JJ was only going 50 mph when he got pulled over and he had slowed way down. It was just a speed trap and that officer was butthead.  At least he wrote the ticket for 5 over instead of 20.

After that misfortune we drove a bit farther and stopped in Casper Wyoming to get groceries at WalMart.  If you know me you know I hate WalMart but on this trip it became our safe place.  It doesn't change no matter where you are.  So it always feels familiar.  We tried to stay on a cheap food budget so WalMart was an essential part of this trip.  And there is always one somewhere.

We made lunch in the car while we continued on to South Dakota.  We were able to pull over and get a pic in front of both state signs.  They even have a place to pull over.  Smart states...  We got our sign pictures, peed on the side of the road (for the first of many times on this trip) Just marking our area.

  The struggle to get a picture of six people and the state sign behind you is real.  

missing JJ and where is the sign  

  Elsie should be in this.  Right? 

  Was JJ just taking the pic by us for fun.  Where's the sign? 

 We are special.  Half a sign, half a family. 

  People its just a sun.  And where is the sign???

  Oh, just let me do it.  JJ said "Okay, that is good!"  Ummm, where is Ellie, Elsie, and what is Emma doing.  No good. 

  JJ was over it.  He just decided to take it.  But do you really think the momma was okay with this....

  Do a hApPy DaNcE!  We finally did it. 

 And folks, that is the most fun you are going to have in Wyoming and most of South Dakota.  Now we see why they have a pull over stopping area.  This is literally one of the main attractions for these two states.

We got back on the road and drove for about one more hour. We were finally here Rapid City.  We drove for 10 hours and only took three stops.  So it was more like 12 hours with the stops but 10 hours in the car.  Once we got to Rapid City we thought maybe we had gone to the wrong place.  There weren't really any mountains, and it was ugly.  Like 3 decades behind and ugly.  Did I mention it was ugly.  We found a Subway and decided to eat dinner there. We walk in and the man behind the counter was not only rude but had two tear drop tattoos by his eye.  EEK!  When the manager came out I am pretty sure she was strung out.  She looked like a meth addict.  Again EEEK!!.  While were were eating a homeless man came in and asked us for money.  JJ gave him half of his sandwich and then he wanted to hold my hand.  Triple EEEEK!!!.  We were all very uneasy and wanted dad there something fierce at this moment.  In my head I was thinking I had made a huge mistake coming without Jeron.  I gathered up all of my ducklings and we set out to find a place to sleep and see if Mt. Rushmore was really anywhere around us.  After much discussion we decided to head towards Mt Rushmore to find a camp ground.  That decision was a wise one and it a moments I realized the Lord's hand in all of this.  He has guided this trip all along and He wasn't stopping now.  We put Mt. Rushmore in maps and I must have hit one of the wrong options and we ended up behind some buildings on a dead end road.  That was obviously not Mt. Rushmore.  So, we tried again, and sure enough we headed in another direction.  This is when I finally saw the hills.  We started on our path and the farther we got from Rapid City the more beautiful things became.  We started driving up the Black Hills.  They were beautiful.  They literally sparkle.  Things were looking up.

We found a camp site, The Rushmore Shadow Resort.  It had showers, bathrooms, and a pool.  It also had a gate and fence all around so that made it feel even more secure.  After we got our tent set up we headed out to go see the Crazy Horse light show.  Personally I think if you go all the way to South Dakota you should go see this.  It is $20 for a car to drive up there but that is cheaper than a movie, and it is a once in a lifetime thing.  It is a little cheesy and its no Mt. Rushmore but its worth it.

This is what it will look like one day.  

  This is what it does look like now.

After the light show we headed back to our campsite and went to bed.  It was a long day but it was a good one.  I don't want to forget to mention on our drive we learned the words to "We Didn't Start the Fire" by Billy Joel.  We only got the first and second verse but that is impressive.