Monday, December 25, 2017

Christmas Letter to Ty

Dear Tyler,

Today is, of course, Christmas day.  Many of the things around us are centering on purchasing gifts, Christmas songs, and general hustle and bustle of the holiday season.  Its so easy to become washed away in the overwhelming noise of it all.

We woke up this morning and headed downstairs with your sister so she could open her gifts.  She carefully opened the small present in her stocking, and then moved on to her larger presents by the tree.  Santa (wink wink) brought her lots of cool things like books, art supplies, games, and roller wheels for her shoes.  As has become the tradition, Santa left a note on the Christmas tree to check downstairs for one last special gift.  She couldn't wait to get down the steps to find a brand new shining bike!  It took me back to the time that you were young and came down the stairs to find a pit full of plastic balls for you to jump into!

Later in the morning your Grandparents and Great-Grandma came to share lunch and do a little more gift opening.  It was a very nice day of gathering as a family.

I thought of you a lot today.  On one hand it's very hard to spend the holiday without you with us.  One the other hand, I know this is a difficult time for your behavior.  For whatever the reason, you are much more easily aggravated and you need to remain inside of the things that are familiar to you.  As hard as it is to not include you in our activities, we know you would prefer not to be.  To us it doesn't make sense, but it does to you.

I just want you to know that we all love you.  We missed you today.  We wish that the circumstances were different, but we also understand the reality of who you are.  We want you to always have what you need, even when that means giving you your space.  

We saw the picture that your staffer sent.  It looks like you are really enjoying the radio headphones we bought for you.  It was great to see you smiling while you had them on.

Someday, whether it's during this mortal life or in the afterlife, we will spend our greatest Christmas together.  We will sit together, perhaps exchange a special gift, and talk about the many roads we have traveled together.  It will be the greatest gift I will ever have, and I look forward to it like no other.

I love you son.


Saturday, December 23, 2017

The More Things Change

Good Evening!

First of all....Merry Christmas to all of the readers of this blog.  Secondly, despite the last entry, I'm not sure that the blog is done with me...or I with it.  So here I am once again.  The truth is, Tyler never stops creating a story, and that story never stops needing to be told.  There may be times where I'm not certain where that story is going, but I have to continue to tell it.

There is a saying which goes "The more things change, the more they stay the same" which is a perfect motto for the last week with Tyler.

We last saw Tyler one week ago at the Contemporary Service at our church.  He was very jolly and loud which is an indication that all system are go.  The plan was to meet him and a staff member today at his favorite pizza place for Christmas.  The entire family would come see him and give him Christmas gifts.  It was the best laid plans...

As it would happen, Tyler once again has been a victim of seasonal change.  It is an affliction he has had since he was very small.  For some reason, between Thanksgiving and Christmas, Tyler becomes aggressive and depressed. Regardless of what we have done to try to prevent this seasonal change, it has always reared its ugly head.  The saddest part of this scenario is that you can tell Tyler hates to feel this way too.  In fact, he is miserable with himself.  Yet no matter how much we have always tried to support him and keep things balanced for him, he could not keep from entering this dark period.  For this reason I believe that the issue is chemical in some way.

I made the decision to postpone the pizza visit for another day.  My fear was that if Tyler is being triggered by small distractions, we could overwhelm him and make matters worse.  Its a painful decision because we want to believe that by seeing us it will make him feel better.  But that is our own rationale and not his.  The truth is we have no idea what his inner feelings are telling him.  It was just better to play it safe and make arrangements for another day.

I was at peace with my decision until I was playing songs on my jukebox at home and played "Change the World" by Eric Clapton.  I felt emotional as he sang about wishing he had the power to change the universe, even though he knows he doesn't have that power. There have been more times that I could possibly count that I wish I could change things for Tyler. I wish I could make him understand the things around him.  I wish he could see how much his Mom, Sister, and I love him.  I wish I could take away the confusion and pain he sometimes feels and allow him to live a "normal" life.  I wish I could indeed change the world.

These are things that have been on my mind since Tyler was born.  Regardless of where he lives or how he is taken care of, I still wish I had the magic words that could change his circumstances.  I wish that somehow I could give him the things that for some reason his own health has deprived him of.  

I wish I could change the world.