I just finished taking Charlie for her daily stroll. I can smell summer in the air and it's getting me all excited! We were told by our respirologist that Charlie still has a few months before she'll need any machines, such as bipap (to help her breathe) and I hope that remains true, so that we can have one last somewhat 'normal' summer. Although, I think we'll always want one more summer, one more fall, one more winter...I don't think we'll ever feel completely ready to hand her over to the awaiting, open arms of SMA.
On my walk today a woman peeked in Charlie's stroller (she was wearing her pink sunglasses to protect her eyes because she can't turn her head out of the sun anymore) and said, "Wow, this is the age you start putting sunglasses on them, huh? That way they'll get used to them and they won't pull them off." I just nodded and said, "Yeah." And smiled, but felt like stopping her in her tracks by saying, "Oh no, if she was physically able to pull them off she would, but she's paralyzed and weak because she's got a rare terminal disease. Have a good day." Those thoughts go off in my head constantly. I also shared the elevator with a few people today and an old man looked at Charlie and said, "What a happy little guy, life is great so far." And I again wanted to say, "Um, not so much, SHE's dying!" And the other day I was walking up Granville street and there were a group of religious people being really aggressive and trying to hand me a pamphlet, I said, "No thanks." But what I really felt like saying was, "Why would god want to kill my baby? How great could he be? Apparently he doesn't like me very much." And again, I realize that no one intends to hurt my feelings, and these questions and comments are the usual banter that we all share with one another, strangers and acquaintances, but I guess I just feel particularly quarantined from the regular folk now. My family is not like most, so the usual everyday banter that most people indulge in, often isn't appropriate for us, and I can't always help feeling angry towards innocent people. I do realize that no one means any ill will towards us, but I'm just being honest about my thoughts here. I realize that there are many people dealing with many situations on a daily basis and I've said something unintentionally insensitive to them as well. That's the nature of strangers sometimes.
I'm supposed to be weaning Charlie from nursing right now, but like a lot of mother's, I'm finding it difficult. We don't give her bottles anymore because the flow is too fast and it's possible that she may choke and get the milk in her lungs. Nursing has a similar danger, which is why I'm trying to wean, but, besides Charlie's 4 teeth getting in the way, I just love doing it. Sometimes I'll be working on the computer and I will just look over at her in her chair watching Sesame Street, and I will get the intense desire to go and pick her up and nurse her. She just looks so beautiful and innocent when she's nursing...I stroke her hair and tuck it behind her ears while she stares up at me with her gorgeous big blue eyes that seem to be saying, "I love you mom." And I can't help but melt. I'm also afraid to start feeding her from her g-tube full time, it's not that the act of actually tube feeding her bothers me, it's just that it's not natural and like I've said before, I don't look forward to having to do it in public, it will make people feel uncomfortable, which will make me feel uncomfortable. But, I guess I'll just have to suck it up and get over it.
The other day I was talking to Matt and I said "OK" and all of a sudden Charlie said, "Mmm K" and Matt and I just looked at each other like, "Did you hear what i just heard?" And then we thought that we must have been hearing things. The next day it happened again! So, we realized that we are now the VERY proud parents of a beautiful 10 month old baby girl that says OK. Whenever we find ourselves focusing on all the things Charlie will never get to do, she shows us that there is also a lot of things that she IS going to do. She has amazing timing, and a way of turning our pessimism off and our optimism on.