A friend of mine's daughter passed away last night.  I knew her in Vancouver - we both lived there and both had babies with infantile spasms.  This mom is advocate extraordinnaire.  An amazing fighter for her daughter.  Here is what she wrote on her blog today:

"Jordan didn't wake up this morning. She passed peacefully in her sleep sometime between midnight & 4:30am. She was right there with us, yet made no plea for help, no gasps for breath, no cries of pain. She just slipped away. Quite unexpectedly. She was almost back to "normal" from her illness of the last few weeks, and was going to go to school today for the first time in over a week. Unfortunately for us, though, it was her time to go. We are shocked and devastated. Devastated. We will let you know when arrangements have been made for her memorial service.  Leslie, Devon, Avery, & Birkeley"

I am just crushed for this family.  This mom has helped me so much in my dealings with the state.  She always answered every question - cheered me on - even during times when she herself was in the hospital with her own child!  Please keep this family in prayer.  I cannot imagine, and cannot even bear to think of losing a child.

It is especially sobering given that Jordan had what Cody has.  A little too close to home.  Through my tears for Jordan today, I have also seen my own son more clearly than ever.  Every smile of Cody's has been framed in gold today.  Every giggle a masterpiece.  I hope I don't lose that sense of urgency - to appreciate him fully every second we have him.  Casey even seems to be understanding...he walks up and gives Cody hugs...pats him on the back.  I think our whole family realizes the importance of appreciating Cody and soaking him up. 

Sadly, he had two 5-6-minute seizures over the weekend.  We are a family who has had no sleep.  One of the seizures involved 2.5 minutes of infantile spasms clusters too.  I have no idea what's going on.  Please keep Cody in your prayers as we struggle through this rough time.

with love,

shawna