A Mom and Her Bible

Last year at about this time our relatively manageable life with Scotty took a sharp turn of nightmarish proportions. It began with a seemingly innocuous facial twitch.  The twitch quickly turned into a constant source of pain.   The crying that followed was nonstop and we were incapable of easing his discomfort.  

He lost his appetite, he lost his personality, he lost his smile, and he lost his joy.  But the saddest loss of all was his laughter. 

And for almost a year we lost our Scotty to whatever was causing him so much pain and suffering. I have never been to hell, but I understand it to be a place of misery and anguish and it felt like we had taken up residence and were never going to be able to leave.

In a very short period of time we went to six different doctors and all they had to offer us were possible causes but nothing definitive and no real solutions.  The general consensus was the medication Risperdal that he had taken for fifteen years had caused a condition called Tardive Dyskinesia.   It manifested itself as involuntary muscle movements in his jaw.  These symptoms can appear after many years on this particular medication.

So we took him off the medication slowly as recommended, and with each decreased dose his behavior became more and more erratic.  He became violent and aggressive and as hard as it was on us my heart broke for poor Scotty.  In his moments of uncontrollable rage we saw panic and fear in his eyes…never anger.  

He was terrified and so were we.

For the first time we were confronted with the very real possibility that we were no longer going to be able to care for him and it paralyzed us with fear. 

Lying in bed one night I remembered something our priest said, “You will never truly know how much you need God until he is all you have.”  And that is exactly where we were with nowhere else to turn.

The burden was so heavy and we were stumbling under the crushing weight.  I reached out to everyone I knew and pleaded for prayers.  Scotty literally was on prayer chains all over the world.  Our burden immediately began to feel lighter.

The very next day we saw the briefest glimpse that our son was not lost to us forever.

And it started with a laugh…a sound that had been absent in our home for months…Scotty’s laugh so full of joy filled us with hope.  

Slowly and cautiously we watched in awe as he steadily, one tiny step at a time, regained his “Scottyness”.  There was nothing to account for this shift...nothing had changed…except the prayers that were being said for him.

Gradually our Scotty came back to us.

Reflecting back I now realize that God had started preparing me for what was just ahead even before we saw any sign of a problem.  It came in the form of a simple request from my friend Becky.  She decided she was going to read the bible…every word…and she wanted me to do it with her.  Never one to decline a challenge I accepted.   

So every day in the quiet of the early morning hours I sat and had coffee with God and read His word and I listened.  Very rarely did I miss a day and the desire to meet the challenge soon became so much more.  

I hungered for words of comfort and guidance and hope... and there they were.  The bible so full of hidden treasures just waiting to be found  fortified me and sustained me.

 My journey through the bible took a year… which is the exact amount of time it took Scotty to come back to us.  

Coincidence…I don’t think so.

I believe with my whole heart that God placed the desire to read His word on my dear friend’s heart.  And in his whisperings he encouraged her to invite me on the journey with her.  Without His words pouring into my heart each day I would not have had the strength I needed to bear the weight of watching our son suffer.

So here we are a year later in a better place than before. Thankfully, we are back to our relatively manageable life…stronger, wiser, definitely more grateful, and so very, very happy.

A little side note:

When I started this blog I really had no idea what direction it was going to take.  My intent was to share stories about Scotty so that we might be an inspiration and a comfort to other families who had children with Angelman’s Syndrome.

Clearly God has other plans for this blog.  Each week I sit down with my idea for the week and start writing and yet when I am finished it looks nothing like what I had envisioned.  I am still sharing our stories like I planned but, I am always surprised at the direction they take.  A year ago, they may have just been stories but now they seem like so much more. 

Coincidence…I don’t think so.

The mind of man plans his way,

The Lord directs his steps.

Proverbs 16:9