"Dolphin Tale," and why you should go see it.

Last week, a few days before we were due to leave for our first trip to Chicago to get the boys started on the clinical drug trial, I started having doubts.  I was concerned about this long car trip and how the boys would handle it.  I was worried about the evaluation and examination before we started the trial - the blood draw, the EKG.  This was all going to be so tough on them.  What if it wasn't worth it?  What if this drug just doesn't seem to do anything for them?

I really wasn't concerned that it would be harmful.  I trust the trial doctor implicitly.  She's one of the greatest Fragile X Syndrome doctors in the world.

I wasn't worried about side effects  - I was nervous that we were going to spend a fortune making multiple roadtrips to Chicago and wouldn't see any results at all.  I was nervous that we'd taken the boys off their anxiety medication for this, put them through the withdrawal and a very tough autumn and start of school, all for nothing - if it didn't work.

Maybe I overthought it a bit.

The afternoon before we were to leave, Aliza and I had some mother-daughter time together, and we went to see the movie"Dolphin Tale."  It's about a kid who finds a beached and injured dolphin and ends up helping the marine hospital to care for it.  The dolphin loses its tail and a rebel scientist played by Morgan Freeman takes on the challenge of making a prosthetic tail so the dolphin can swim normally again.

It's a true story.

At the end, there are scenes from the real dophin (named "Winter") that inspired the movie, and the many people with disabilities who came from far and wide to see her.  This animal, swimming around with its artificial tail, has such spunk and energy and heart.  Many, many people with a variety of disabilities found a kindred spirit and inspiration in Winter.

It reminded me that we might have to venture out of our own backyard to find inspiration.  We might have to travel.

Winter rejected the first couple of tails Morgan Freeman's character made for her.  They just weren't quite right.  But he kept going back to the drawing board and trying again.

It reminded me that it's important to keep trying, even if we are faced with roadblocks and rejection.

The look on the faces of these children and adults, some in wheelchairs and some missing limbs, when they got into the water with Winter was absolutely overwhelming for me.  They were so awed.  They live in worlds where they are different, and not often in a positive way.  Winter was so beautiful and graceful and special, and maybe it reminded them that they are beautiful and graceful and special, too.

It reminded me that it's important to reach for the stars.

It was a great movie and you should go see it.  Bring some tissues.

I Hitched up my Britches

I really like to read blogs by other parents of special needs children. Here's one by a mother raising a child with hearing loss, that I really like:

Big Teeth and Clouds

And in this post, she discusses that universal question asked by everyone when they go through hard times -- "why me?"

I sometimes think that's why God gave me three kids -- so I wouldn't have time to sit around thinking "why me?"  (and Joey @BigTeethandClouds, I don't for ONE SECOND think that's what you do!  That's MY tendency, not yours.  You know I love you!)

Once in awhile I'll think about how ironic it is that when I was younger and I didn't know what life was going to bring (and had never heard the words Fragile X Syndrome), I was a much more depressive, negative, downer of a person.  I was very likely to see everything that happened to me as a bad thing, and often felt like the whole world was against me.

(although on second thought, maybe this wasn't so unusual.  What teenager doesn't think the whole world is against them?  I just continued that beyond the teen years for awhile)

I wasn't actually clinically depressed.  It's just that nobody was as good at brooding to a sad song as I was.  My cup was half empty.  No, it was empty.  I was embarrassingly gloomy.

And basically without cause.  I mean, I had it pretty good as a kid.  Never wanted for anything, had parents who took good care of me and provided for me in every way.  I had nothing really to complain about, I don't know why I was such a Negative Nelly. 

So it's a little ironic to me that now I have children who struggle to accomplish the everyday, ordinary things that I used to completely take for granted.  Like making friends and playing games and going to birthday parties and having a good day at school.  They work so hard so do simple things, and they aren't Gloomy Guses.  They are about as happy as a kid can be.

I sometimes think that there is a wall beyond which, you either are going to fall to pieces or you are going to hitch up your britches and try and deal with things, and my kids put me up against that wall.  As it turned out, I only headed toward negative town when I practically had to create reasons to go there.

Now that things really are a little tough, I am up for the fight.  I didn't fall down and die, I rose to the occasion.  No more living on the dark side.  No more waiting for bad things to happen.  No more cups half empty.

I don't know how I stay positive.  I guess when pressed up against that wall, I went over it.  Or maybe I'm sitting on top of it.  Either way, I didn't let it smush me.