Once Lily was officially home with us, we began taking her to weekly sign and music programs aimed specifically for parents and children with special needs. The majority of children attending the program along with us had a diagnosis of Down Syndrome, so it felt a little bit like walking into our own special clubhouse. …
This started off as just a post for day 2, but became a work in progress along the way 🙂 While my interactions with Jordan helped me begin to understand that our differences were incredibly small, I would be lying if I said that they changed everything about what I thought about disabilities. While I …
5 years. Since just after that horrible day 4 years ago, the goal has been 5 years. “Take her home and grow her,” they told us, “if the day comes when she needs a heart-lung transplant, the success rate improves dramatically once a child is 5.” It seemed impossible. 5 years felt more like a …
It’s been a long couple of days. I’ve been hit with bout of insomnia like I’ve never experienced before. I have insomnia often, but usually it just means that regardless of what time I crawl into bed, it’s 2 or 3am before I’m finally able to crash out, but this time was different and I’ve …
I was getting all ready to write a post about how we’ve been watching in amazement as Lily becomes this smiley, giggly little girl; how she is overcoming her aversion to using her hands with so much speed that we can barely keep up with her; how I no longer feel slighted when she stops …
Have we ever known Lily to just let a happy event happen without throwing in her own little wrench? We went to Disney World and she pulled out her own g-tube for the first time, this time she had a playground donated and she got an infection around her stoma! We actually felt really bad …