Saturday, February 8, 2014

A Glimpse of Acceptance

Come my friends, pull up a chair, while I bend your ear about things unclear
Things of import, things of faith, things of beauty and things of grace
This world, of mine, so precious and dear, I wish to share
Now that you are here
I've waited a while, so let us begin
Here is my story, my friends and kin

That little poem pretty much sums up the way I see this blog.  It is my virtual living room and you are my guests.  I am a story teller, a weaver of tales and my life has given me plenty of thread to weave with.  I'm never sure what each story tapestry will look like as I begin.  I pick out a few threads and just begin to tell you the story that those particular threads are a part of.  I am always surprised what the finished product is. For this reason,  people often have a hard time defining my blog.  Is it about motherhood? Autism? A personal diary? A creative venture, perhaps?  Yes, to all those and so much more.  This blog is a series of glimpses into my life, my family, my heart and my head.  No one glimpse is enough to tell the whole story but if you step back and view all the glimpses as a whole, the tapestry of me will emerge.
I say this to clarify for some of my newer guests.  You are all welcome, I am enjoying our conversations together.

The story I have to tell today is one that is still developing.  The threads are still a bit tangled and I am still working out the knots to see my way clear to the beauty inside.  So bare with me, as I may travel a few rabbit trails, or even get hung up on a brier or two.

I have been very honest about our autism story , if you will.  It has been a huge, life changing, beautiful journey.  I am blessed beyond measure by the boys God has entrusted me with.  However  even in great blessing there can be great heartache.  The trick is to feel the heartache, accept it's reality and move on to the beauty God has.
I have alluded to the rough year my oldest son had in 2013, without giving the details.  For you to understand, I am going to give more specifics.  Paul has always struggled with high levels of anxiety directly connected with both the Asperger's and his giftedness.  In February of 2013, he had an appendectomy.  
This started  full year of spiraling anxiety (though for a long time we didn't know that was what was going on).  He spent months in pain, laying in one position on the sofa, after the surgery.  We sought out specialist after specialist, made repeated runs to the ER, had every test imaginable, only to be told they could find nothing wrong.  We had to remove him from school because he would have major pain attacks almost as soon he got there.  Over the summer he seemed to improve so we decided to give school another try.  We are so blessed to have a middle school that more than worked with us.  They twisted themselves into a pretzel to accommodate Paul but in the end he still could not handle it.  A month after enrolling him I was once again unenrolling him.  It was October, this journey had started at the end of February and Paul was continuing to shrink his world.  He now confined himself to one spot, on our sofa.  His pain-free, safe zone.  Our doctor said Paul needed to be medicated for his anxiety and sent us to a Psychiatrist.  After three and a half months and two medications, Paul is doing much better.  As a matter of fact he is slowly working his way back into school! This is fabulous news.  I cannot tell you how incredible it is to see my goofy Paul coming back after a year of him being completely paralyzed by his anxiety.
Seeing how well this had worked for Paul, we decided to bring Jamie.  As Jamie has entered the pre-teen years he has become much more difficult to deal with.  He still does not correlate his action to consequences and still has a very big problem with any sort of boundary to contain his compulsive behaviors  I wanted to get a another professional opinion.
The Psychiatrist sat with Jamie and I for an hour and twenty minutes.  Jamie did most the talking and she mostly observed and asked questions.  Jamie then left the room and she and I had a long talk.  I expressed my concern about his lack of development in several key areas.  Jamie is so advanced in other areas and has been in therapy since he was about 3.  Most of the time people think I'm crazy when I express concern that Jamie may never be able to live independently.  I think a large part of me wanted to hear a professional tell me I was an overly concerned mom and everything was going to be fine. That isn't the conversation that occurred however.
Instead the doctor confirmed that there were significant developmental concerns that she could see and that unless Jamie built some of these bridges over the next few years, I was correct in thinking he would not live independently.  She also said that his major splintering (he is highly advanced in some areas and has major deficits in others) further complicated the situation.  She was not negative at all and I thought I was prepared for this news, after all I had seen it coming.  Instead hearing my intuition confirmed, broke my heart all over again.
Friends please don't tell me that the doctor can be wrong and that he still has more years of growing and maturing to do.  I know this.  We have already overcome such monumental hurdles that we were told impossible to overcome when it comes to Jamie.  I am not giving up but you need to hear my heart here, this news just about crushed me.  Even I need a moment to feel my feelings, to scream out "This sucks!" before moving on to the business of fighting and forging and finding beauty.  
It sucked that my beautiful, talented, sweet child may not be able to drive or live independently or go away to college. It sucked enough that I broke down in tears in front of a random stranger who was kind to me.  Talk about embarrassing!!  It sucked enough that all I wanted to do was curl up into a ball and cry for two days,  I didn't because life doesn't stop just because your world is falling apart.  
I called my two best friends and they listened to my heart and didn't judge me.  I cried and then I accepted it and began to move on.  This is life folks.  All the time people ask me how in the world I handle five boys, four of whom have ASD, a husband on the spectrum, both my husband and I having lifelong diseases and all the other stuff our daily life entails.  Here it is folks.  Here is the secret.  You grieve, you cry, and then you accept.  Once you accept God's plan, the why of it all doesn't matter nearly as much as the how. How is this going to work?  How are we going to plan for this or that?  In finding the how, you find the beauty of God's perfect plan, his complete provision and his amazing grace  This may read like a Pollyanna reality but it's not.  I have hard days, my heartbreaks.  I know it isn't easy, believe you me.  But in fixing my eyes on what is and not on what I wish was, I have found peace, I have found grace, and yes I have found amazing beauty.         


Unknown said...

Thank you so much much for sharing your heart. Not the neat, pretty little red thing all wrapped up with a bow; no the raw, real disappointments that no one of us can avoid in this journey called life. This post is definitely a nugget that I will tuck away for future reference.

Joanie said...

See this is where it all works to the glory of God. When we are busy busy busy fighting God and telling Him what he should or could or ought to do we miss the joy of walking holding His hand and feeling His strength.

When you are open and honest and tell it 'like it is' many folks do not want to hear it. They want to fix it. But sometimes it is okay just to wait and see what God had in mind when he created Paul and Jamie and Kristine and Joanie [and all the others]. It is a mystery we may not be able to figure out but that doesn't make it bad....just a mystery. Finding the quiet place to rest and some stuff to do while you wait for the next instruction from the only One who truly sees the big picture in perfect focus.

Anonymous said...

Gods plan is so much better then our own. I love that you can so gracefully bare your struggles.. :)

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