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.