The Little Light

Jason & I met with a social worker last night. She's with Children's Hospital, the Deeya program. Deeya means 'Small Light' - and it's the perinatal hospice program that is being recognized across the country for families with similar situations. That is to say, facing the impending death or lifelong handicap of their child.

We met Martha at Caribou last night -- she was going to come to our home, but Hurricane Amelia and Tropical Storm Ardis hit hard yesterday and I'm too rotund with Henry to bend over and pick up the entire house -- and the first thing she did was give us two quilts. Volunteers make quilts for the children associated with the program. Amelia got a lovely print, and Henry has a Clifford themed-blanket. It was enough to make me tear up. There aren't any words for the quiet kindness of strangers. I'll never know the people that carefully put together each of these quilts - but for my children, they'll have them as memories. Amelia will know that THIS is her little brother's quilt. I guess what I'm saying is - when you do something like this, it's really appreciated. Really.

We went over what Deeya does for home hospice care, what to expect, and what sort of care we want for Henry. At what point do we want medical intervention? What are our goals for this experience? Did we want certain photography?

Amelia was still cranky, and her eye started to goop, and she was tearing that coffee shop apart. She had a blast, while we chased her and tried to have a very important adult conversation. [Yeah - we're pretty sure she developed pink eye. We both thought it was just a bit of sleep in her eye from her nap time - but within an hour, we both noticed the goop kept on coming.. by evening, that eye was turning pink. Too late for urgent care - making an appointment this morning to have her checked out by her pediatrician!]

Our social worker with Deeya did ask to be present at the next Care Conference meeting.

She also suggested we bring our pediatrician.

My care team just grew to eight people. Wow.