This is the first time I've left Charlie's birthday post this late. I've just been feeling so stressed out and self absorbed lately...so much so that I couldn't even muster the energy, nor did I have the mental capacity to sort through and rehash my emotions. I still don't really. So, I won't yet.
All I can really say is that when Charlie was in the hospital this last time, and after a routine follow up with her neurologist, we were told by both her neurologist and her respirologist that they believe she may be around a little longer than they initially thought she would be. GREAT news, but it really got Matt and I thinking about a lot of things. Like what was really important in life and what wasn't, what was worth putting our blood, sweat and tears into, and what wasn't worth our energy at all. For the past 10 months we have been living our lives waiting for Charlie to pass away, and then we thought, 'after Charlie' we'd begin our lives again...start over. But now, after Charlie's recent, more positive prognosis, whether that means 3 months, 2 years, or 10 years, we've began to think more along the lines of, "This IS it, this IS our daughter, this IS our life we're living, right NOW, so let's start living it the way we want to live it...let's stop planning for something horrible that hasn't happened yet because we'll never be prepared and we'll only waste the precious time we do have, and instead look at this whole situation as a gift and a warning, to start living life NOW, who knows what tomorrow brings. Life is short, lets enjoy it while we can." And, In realizing this, we discovered that our lives are in need of some major renovations for both of us to be truly happy, and for Charlie to be truly happy too. So, we're still figuring out what that will look like right now.
Not a day goes by that I'm not thankful for Charlie. Everyday I unwrap another layer of my little present and I get a better glimpse into what an amazing gift she really is. I was talking to my friend Amanda who has a little girl, Gemma, who has an undiagnosed neuromuscular condition similar to Charlie's and we both felt that as painful as it can be to have a child like this (meaning, it's hard to be told your baby won't be here for long) we also feel like we're the 'chosen ones' like, we've been entrusted with little earth angels. I told Amanda that I often feel Charlie is like my little Buddha, so peaceful and wise beyond her/anyones years..she's better than all of us, so pure and enlightened. Amanda agreed and we discussed how we often looked to our 'angels' to give us the answers and show us the way, and to help us make decisions in our daily lives. It's really pretty amazing. And I wonder why me? Why Matt? Sometimes I'm not sure if I deserve her, but she's mine all mine, and I'll keep her regardless of my prerequisites.
I love you Charlie. I'm glad you chose us. Happy 16 month birthday! xoxo