Right before the rug was pulled out from beneath us!

Saturday, September 29, 2012


   HELLO.. It is I ... The long lost writer of this blog...  I feel like it has been so long since I posted last.  We have had a busy year... Enjoying life.. watching my little boy live....  It's like life is normal again, but different. Things we took for granted before his disease progressed,  that we have been given back after the surgery, have so much more meaning.
   In June, we went on a family vacation, which was fabulous.  We even enjoyed a helicopter hide.  Jake was swimming and hitting on girls.  It was interesting when we met a couple and the gentlemen said he had noticed Jake's scar and had wondered what had happened to him.  We do not even notice the scar anymore and Jake clearly is not self conscience about it. I guess to someone who is not use to seeing a scar like that on a young man, would tilt  their head and say, "Huh?" Regardless, we had a fantastic time in Myrtle Beach.
  In July, we attended our family reunion, and it made my heart smile to see Jake playing games with his second cousin who had an equally rough year herself, being diagnosed with Crone's disease.  What a great day watching these two amazing kids having the chance to smile, enjoy family, and just be kids.
   As I flipped through pictures of the last few months,  I am just amazed at how blessed we are...  just living and enjoying life.

   This morning, we went on an hour and a half long tour walking through a place that has rescued lions, tigers and other big cats.  Did I mention we were walking... for an hour and a half... I know it may not seem like a big deal to most but to me it's amazing. I have this overwhelming urge to cry. As I type this I recall the first conversation I had with the president of HCMA, when I told her we walked a half a mile down the road and she said I would not be continuing those walks with Jake because he was at severe risk for SUDDEN DEATH. Ahh Haa! Now you understand where I'm coming from. It is amazing. A true blessing.
 Every night this weekend, Jake and Jennifer are volunteering at a non profit organization's Haunted house. We have to pick him up at midnight.  Just take a moment to think about where he was last year at this time.... only awake between 4-6 hours throughout the day... to exhausted to walk anywhere....It is truly wonderful to see him living... enjoying so many things that for so long he couldn't do.  Every time I see my little boy smile, knowing he is enjoying life, I can't help but to think back to last year when life wasn't so fun for him or any of us. It sure makes you appreciate the simple things in life.