Andy was away for 4 days touring with Mucca Pazza, a circus punk marching band he plays with (this is a photo of one of their New York gigs!). I was expecting to be exhausted by his absence but arranged for so much help while he was away that I ended up getting more sleep than I’ve had in months and re-organizing the pantry. Go figure. Andy did not fare quite so well. He slept in a sleeping bag and stayed up till the wee hours each night. But he had a great time and I’m so pleased that he was able to get away for a few days to do something he loves.

I’ve felt rather stupified these past weeks about my ongoing feelings of loss and grief regarding Ramona. What’s also been occupying my thoughts is my own attitude towards her “condition”. Do I just treat her like any other baby? On the other hand, is special treatment really in her best interest? Part of me worries that being so careful with her and making so many allowances for her might interfere with her ability to reach her own potential.

I know that all parents eventually have to face that their children will have issues and challenges in their life. Am I the only one who on some level fantasized that our children would be trouble-free adults who have inherited only our best qualities? I’m just having a hard time facing that, at the ripe old age of 8 months, Ramona has a lot of known difficulties ahead of her. I wish I could sit around and fantasize about her becoming a painter, a runner, or a musician. But mostly I wonder, “Will she be able to walk? Will she be able to eat on her own? Will she be able to speak?”.

I feel like the window of time where it was okay to fall to pieces over this has closed. That now that the eminent threat to her life has passed for now I should be able to get a grip. But some days I’m still just in a state of disbelief that this isn’t all just going to go away. It’s overwhelming and devastating. Any thoughts on living in the moment without fear, holding onto hope without being naive or trusting in God’s provision would be very welcome right now.

Here are some things that I am thankful for today. Ramona’s eating three small meals by mouth a day. She last weighed 19lbs 7oz. She’s becoming more comfortable with bearing weight on her legs. She’s become much more vocal and responsive to things she enjoys (i.e. pulling Simon’s hair, looking at pictures of animals, and playing peek-a-boo). She’s getting a ton of hair on top which we think might be going blond.

Thanks for thinking of and praying for us so vigilantly. It still means so much.



Photo by: Eric Harvey Brown