Sad day today.

A local child with CdLS passed away suddenly on Dec. 7. Her mom was the first person I ever spoke with after Maddy's diagnosis, and we've kept in touch through the years ~ although somewhat sporadically.

I just cried and cried when I read the email yesterday. C. was just about to turn 12 years old, and was perfectly healthy. She went into the hospital on Wednesday for some dental work under anesthesia, and an endoscopy to check that her reflux meds were working. She came home the same day, and was doing fine. Thursday night, she went to sleep and never woke up. *cry*

M's backup nurse came to stay with her this evening so T and I could go to C's wake. It was so heartbreaking to see her in her little casket, all decked out in purple (her fave color, just like Maddy's). She was so still ~ a little one who never sat still for more than 2 seconds, just like M ~ it was so wrong to see such a beautiful young girl in a casket.

Her parents split up at some point in the last year or so (I didn't know until I read the obit) and it was so tough to see them going through this on separate sides of the funeral parlor. D (C's mommy) was just devastated ~ we just held onto each other and cried. Her dad, R, was holding himself together a little better, relying on his Catholic faith to bear him up. The room was packed with mourners and flowers and photos of C. Friends, teachers, therapists, family ~ all mingling together and united in missing this beautiful little girl.

When we left, DH and I stood outside, under the portico, holding each other and sobbing.

I know I've said it before ~ while CdLS is not in itself a fatal syndrome, there is so much we don't know ~ so many things that can go wrong. We've looked Maddy's death square in the eye on several occasions, and had it pass us by. We've been blessed with lots of really happy time together ~ more than any of us ever expected. We really try to enjoy every single day with Maddy, and love her to pieces, realizing that someday we'll lose her. Tonight just hammered it home to me, once again ~ how unfair it is to lose a child. How wrong it is for a parent to have to bury a child. How awful it is to see a child in a casket. How blasted wrong this all is.

I came home and hugged Maddy, and rested on her bed with her for about 30 minutes. She was sleeping, and had no idea I was even there ~ but it didn't matter. I just wanted to feel her warmth. Smell her sweet hair. Look at her beautiful face. Love her ~ for as many days as we're given. Then I changed her diaper and made her realllly mad, got a BIG hug and a kiss, and put the princess back to bed. Lucky, lucky me. I got another day with her. *sobbing*

God, please be with D and R (and little sister H) while they learn to navigate through life without C. Please hold them up and bless them with your love and your light. Amen.

Rest in peace, C ~ the world is a little darker without your light blazing in it.