My little baby is just two months shy of a year old! Where did the time go? When she was on the inside it took FOREVER for ten months to pass, but now that she's on the outside, I blink and a month passes.
I can't help but think about when Charlie was first diagnosed back in January, we were told she probably only had a few months to live...it's been almost four months and she's still here, and still smiling! That being said, I'd sure love to be back on 'pregnancy time' and just slow time down, possibly even freeze it, so I could just absorb all things Charlie. But, I understand that whether we have Charlie two more months or two more years, it'll never be enough time.
We are nearing the end of our Canuck Place stay, and I have to say, although we were initially dreading our time here, it did a world of good. We feel comfortable here and all of the staff and volunteers genuinely love their jobs and want to be here to help Charlie and help us. I went out for a couple of hours on my own today and it was nice to know that a qualified nurse was watching Charlie and that she was well taken care of. Although, I still got that aching pain inside of me reminding me of my short time with Charlie which caused me to miss her and wonder why I even bother taking breaks...there will be plenty of time for breaks...later. I am starting to feel guilty when I am not with Charlie. I worry that I'll regret the breaks later, and the morbid side of me worries that she'll die when I'm out for lunch or while I'm dancing at a wedding which will lead me to self hatred and never forgiving myself. I think it's just best for all of us if I choose my Charlie free occasions carefully.
We've been learning to comfortably and confidently use Charlie's feeding tube more often. It's actually not that bad. I would still feel uncomfortable using it in public though...I feel like it would scare people or gross them out, or worse, judge and make assumptions about Charlie. I shouldn't care, but i do. But, it has to happen soon enough, so I better toughen up.
Something I've realized since all of this has transpired and from spending so much time in places like the Children's hospital and Canuck Place, is that if only everybody was able to spend some time with these special children, the world would be a better place. Seriously. I still have many days where I feel ripped off and jealous, but there is a whole other part of Matt and myself that no longer feels punished, instead we feel privileged and honored to have been given Charlie, SMA and all, and to be a part of all of these other amazing children's lives. Sounds cheesy, but it's true. Having had this experience has changed me so much. I have a new found appreciation for life, for parents of handicapped and/or ill children and their caregivers, and for the children themselves...what little troopers and with such amazing attitudes and happy dispositions! Where I once thought, "What did I do to deserve this?!" I now feel rewarded for good behaviour. I still think SMA is a cruel disease, but Charlie is so amazing despite it and because of it. Everyone needs a little Charlie in their lives. She elevates moods and changes people.