I feel trapped...which is making me feel claustrophobic...which is making me feel extremely anxious. I hate knowing that no matter what we do, Charlie will still only get worse and worse until she dies. There is no hope and nothing to look forward to. Who even thought of SMA? It's such a cruel disease...a child/baby slowly becomes paralyzed until they eventually suffocate, the whole while being completely all there and aware. Just thinking about it I get the feeling that the walls are closing in on me.
We'll never be able to get annoyed with Charlie and say, "Go outside and play."
I took Charlie for a walk yesterday and ended up at David Lamb Park in Yaletown, school had just been let out so there were at least 60 children and their parents there. Charlie loves to watch other kids so I strolled her up to watch the kids on the swings, she did, with a big smile on her face...I just looked around bitter and resentful because to the naked eye, all the other kids were healthy, and I thought to myself, SO NOT FAIR! I left upset and called Matt, I don't like feeling jealous or envious of other people, and I honestly wouldn't wish an illness like this (or any) on any other child. It's a vicious cycle...I have those thoughts and feelings, then I feel guilty for them, then I get angry at myself for the thoughts and the guilt, then I forgive myself, then something triggers me, and the myriad of emotions begins again.
I have had a couple of emails with the women that I met at the hospital the other day...she told me that she has to change her daughters diapers with gloves on because her urine is so toxic and that she's sick from the chemo. Those are the types of situations that I find a little solace in...I'm at least thankful that Charlie doesn't hurt.
Matt and I took Charlie to her respirologist yesterday...he is a 'tell it like it is' kinda man...he doesn't sugar coat anything, which is good, but sobering. He told us Charlie would need Bi-pap (a machine that helps her breath) in a few months and discussed her average life span (2 years old...maybe 3) explained suctioning her secretions, how we'd probably have a few long term hospital stays in the future, etc. Just completely deflating information. Two days ago Matt and I were watching Dave Letterman and Matt was feeding Charlie, she started choking and gasping, I grabbed her and started hitting her on the back and Matt snatched his phone from his pocket and was about to call 911 when it subsided. We both looked at each other with terror in our faces, collapsed back into the couch and stared into space. We didn't even have to say anything to one another, we were both thinking "Holy F*#k, welcome to my life! How is this my/our life? Saving our daughter on a daily basis?" Way too much responsibility!
When we first found out About Charlie, I wanted to get pregnant right away. I couldn't imagine losing her and not being a mother anymore. I felt like I was part of a whole new world with play dates, new friends I'd never have connected with childless, family vacations, etc. But lately, I'm thinking no more babies for me. Besides the stress of all the testing and worry and fear while I'm pregnant (unless i get invitro) I just don't feel like worrying or caring this much about another human being again. I think. Like I've said before, I'm not good with stress, and after Charlie, I think my stress meter will have blown up. That's just this week though, who knows what next week brings.
I have the house to myself right now...Matt took Charlie and his Dad and Jenny to go and see his Nana, we've been on the outs with her for about a month, we just felt like Nana and her son Matt's uncle, were being really insensitive about our whole situation and that they were putting a lot of pressure on Matt to 'be a better grandson' and so the relationship began to dissolve from there. BUT, since all of this began with Charlie we have realized how short life really is, so he's up at Nana's hoping to get things good again, and i wish him luck. In the meantime, I'm going to use this time wisely and take a nap, ALL BY MYSELF! ;)