Long Time Coming

This time a year ago, Olivia Grace was almost 2 1/2 months old on the day she was supposed to be born. She was still in the hospital, I was still living in the Ronald McDonald House, and Mom and Dad were still living at our house taking care of Amelia. Rafe was settling into his new job, working on EWS and taking care of Amelia at night and then driving to Charleston on the weekends to be with Olivia. I, in turn, drove home to see Amelia.

This time of year is my favorite. I love everything about it - I hit every fall festival, farmer's market, art show, theater in the park, pumpkin patch and outdoor event that I can. Last year, however, it seems that fall never came. It was the height of summer, I had the emergency delivery, and then in a blink it was Christmas.

I only remember a few scenes at this moment from last year. Going to a farmer's market in Beaufort and buying bags and bags of freshly caught shrimp; buying bread and home made cheese from an Italian who slipped me a few extra when he heard about our situation....the short, windy and dreary daily walk from Ronald McDonald house to the hospital, through the corridors and up the elevators to the NICU. Trudging 3-4 times a day to the hospital with my cooler of breast milk to deliver, going back to RM house to eat meals and talk at the table with the other families, and occasionally sitting outside on a bench by the front door of the hospital and eating spinach, feta and tomato pizza. Even now it's somewhat of a irony to me that I lived in Charleston for over 2 months and know intimately the walk from the house to the hospital and not much else. I was very lucky that it wasn't during rainy season and I never had to walk there when the streets were flooded.

There is a lot I don't remember about last year, and other things I remember in excruciating detail. When Livie was born, she could raise her eyebrows but not open her eyes. She could occasionally kick her feet out but very rarely. By October last year, she could open her eyes, occasionally move her head and sometimes move her body a small amount. She had tubes coming out of her, a colostomy and a gtube, but the majority of the tubes had all come out by this time. She was already getting therapy in the hospital. She was still having tests run on her to try and find out what exactly happened to her and what direction we needed to go in next. I can't remember if she was off oxygen and on room air at this point but I don't think so. She still made no sound.

This blog started off as a way for me to share things we were doing with my husband when he deployed. At the time, it was easier for him to access a website than to download pictures and check email. It also became a way to keep in touch with far flung friends and family with busy lives of their own - instead of flooding an inbox with emails and pictures, it's here for those who love us to peruse at their leisure.

When Olivia was born, it was a way for our church and military family to see updates and pictures of the little girl and family they were praying for and helping.

It's going to morph into something else, and be open to more people whose respectful comments are always welcomed. My husband is deployed yet again, and we have a diagnosis for Olivia. Some posts will be of more interest to one group or another. This blog is still a way for me to document our lives... mainly for my husband, our family and friends. It's just that our family got a little larger this past year - we are now also part of the Prader Willi Syndrome family.

And in a not so small way, this blog is for me.