Grammie

These past few weeks (actually 7 to be exact - since Ford was born) have been very full, to say the least.  Full of much much happiness and full of much much sadness.  After being away from "normal" life for a few days I've had the chance to reflect on what an immense amount of change and activity we've just come through and finally have some time to just sit and think (or walk on the beach and think).  I'm hoping all of the mini-blogs I've started in my mental sticky-note list will see the light of the screen, I know it may not be all that interesting to the readers of eddie out, but it sure is therapeutic to me.

The hardest thing we have been coping with is the sudden loss of Joe's mom on August 7th.  Kathy was diagnosed with multiple systems atrophy (MSA) about 2 years ago, but in hindsight had the symptoms of it for many years previous to the actual diagnosis.  MSA is a degenerative neurological disease where there is no cure and really doesn't have any treatment except for treating the symptoms/problems as they occur.  The easiest way to grasp the disease is to combine the parts of the characteristics of parkinsons (loss of gross motor skills), alheizmers (loss of cognitive ability), and multiple sclerosis (loss of body functioning).  It is such a rare disease that there isn't even much research being done on it hence no cure or real treatment plan.  The first few years we gradually saw a loss of kathy's abilities and coordination and then last year it became clear that she needed to live in an assisted living facility with 24 hour nursing care.  She was receiving incredible care, in a stable and supportive environment, and we thought she would easily live 5-7 more years (no one has lived more than 10 years past initial diagnosis).  She started having a lot of problems chewing and swallowing in the beginning of August, but was able to be on a liquid diet, and then just a few weeks later couldn't even handle that, got a bad infection and never recovered.  Her nurse checked on her the morning she passed, saw and heard her breathing, went to make her shake for breakfast, and when he returned kathy had stopped breathing.  

So even though we knew she had a terminal illness, the quickness of her decline definitely caught us off guard and her death was somewhat unexpected.  But there is also an element of relief that the struggle is over and she is pain free and with Jesus.  Joe was able to share some very sweet moments with kathy this week - she was asking him why she doesn't just pass and he said it was OK if she needed to go, she could go and be with Jesus.  Through gesturing, she communicated and shook her head and indicated no that Jesus was with her right now sitting at the edge of her bed.  it gives us great peace that she seemed to sense what was happening, had some sort of peace and comfort in her passing, and more than anything that Jesus was right there with her, she was not alone. 

Here is the last picture we took of her when we took Ford up to meet his Grammie.  And a link to her obituary that Joe wrote.