ALS Diagnosis

Have you ever wondered how you would react if you were told you are going to die or were given a diagnosis that is almost certainly terminal.  I don't think I had the reaction I would have predicted.  I was shocked, questioned whether it could be something else, was he sure?  Then I tried not to cry.  I looked at Kenny and he was in tears trying to hold it together.  I was on the examining table and he was in a chair that seemed to be a mile away.  This cannot be happening. 
My doctor proceeded to tell us about his multidisciplinary clinic and how all of my care would take place there.  He spoke of speech therapy not to regain my speech but to teach me how to effectively swallow so I don't aspirate and get pneumonia.  He says that is very critical in someone who has ALS.  He then told us how we will be proactive in getting speech aides in place before I lose my ability to speak completely.  Everything from now on is all about preparation for what we know is coming.  At the first sign of losing weight they will place a a PEG feeding tube before you lose your ability to swallow. 
I have to say it was a lot to take in.  Nothing like I had ever imagined.  The doctor left the room to get his RN coordinator for me to meet and Kenny and I stood at the big window in the exam room.  We are on the seventh floor looking down at the people walking about.  There was a "Seasons Greetings" sign all lit up on the side of the hospital.  Kenny held me and we stood in silence.  We tried to catch our breath and hold it together.  Like we were we expected to?  It is really crazy how you try to be strong because you don't want to appear be weak.
It has been one month since I received the diagnosis.  In that time we have had so much happen in our little family.  My first grandchild was born at 35 weeks gestation.  My daughter went through so much with her pregnancy.  She was on bedrest for most of it.  Then she is told her baby isn't growing and he will have to be born early to prevent him from getting really sick.  At 9 days old he spent his first Christmas in the NICU.  After thirteen days in the NICU he was released and was able to be home for the New Year.  We are so very grateful that our little baby was not sick just young.  He is so very precious and has been a great diversion from my own agenda.