I’ve realized that heading to the hospital for ANYTHING causes a trigger reaction in me.

I’m headed there now for a very normal, very routine colonoscopy and I’m terrified. I’m terrified they are going to admit me and make me stay. I’m terrified they will find out that Lupus is doing something ELSE to screw with my life. I am terrified the kids are scared, that my husband is scared, and that everyone has to deal with me in the hospital, at the hospital, or anywhere NEAR the damn hospital.

I have not been admitted since my TIA this past summer and that set us all back mentally around here for a good long while. In fact, I’m still not sure we’ve recovered. It’s too scary. it’s too hard. And it reminds everyone in this house of just how many organs I have lost, how many surgeries and procedures I have had, and how horrible this entire Lupus journey has been.

I want this to be over. And while I realize there is no cure for Lupus, I also know some people have a handle on their disease and live a very normal life. I want that to be me. I want that for my family so badly that I’m up at 5am crying and trying to pull myself together for their sake.

It makes me sick to my stomach what I put them through. Sick.

I know what you all are going to say so please, it’s ok. I would do all of this in a heartbeat for them. I wouldn’t even THINK about doing it and I’d be right there next to Aaron if it were him and of course next to either of the kids, advocating on their behalf and holding their hands. But I don’t want anyone to HAVE to do this for me. That’s just how I am. Believe me, I’ve tried to change over the course of all of this…and while I have gotten better at accepting it all, I SITLL HATE IT.

I’m the Mom. I’m supposed to take care of them. That is my job. And yes, Aaron takes care of me like any loving husband who kicks ass would…but he’s been doing it for SO LONG and the kids have had to deal with this for SO LONG. Too long. Way too long. It’s NOT FAIR to them. It’s just not.

I’ve had trouble putting into words this week’s passing of my friend Susan, otherwise known in the blogging world as WhyMommy. She was an inspiration for one of my first BlogHer projects way back in the day: BlogHer in Second Life. She, well…her avatar, came to the virtual conference because she was undergoing chemo at the time and could not attend the real thing. And I can’t take my mind off her husband and two boys and how hard and awful this all is for them. No one should have to lose their wife, their mother, their friend.

And I think about all the years that have passed where Susan fought so hard and even worked (she was an astrophysicist how awesome is that?) and kept up with life while cancer was attacking. She was a wonderwoman. And my bitching about some small procedure seems so insignificant in light of recent events.

But she would talk to me about understanding how I felt. She was one of the few people with whom I would commiserate about being ‘sick’ while trying to raise a family and live a normal life. Just a few weeks ago she reminded me that I was strong, and brave, and that my children and my husband love me unconditionally -even if that meant I was stuck in bed and even if that meant I couldn’t do it all. As she put it ‘they are happy to just have you THERE, Erin. They love you.’

I wish she were here now to tell me those words again. Because I need my friend this morning. It’s so selfish of me, but I need her. She understood. And I would tell her she is so much more brave than I am (she was) and she is so much more graceful in her fight (she was) and that I wish I had her attitude. And she would tell me she has bad days too and then she would send me something awesome to show the kids that usually involved space or the planets and we’d laugh and just…do what friends do.

Her absence this morning is like a kick in the gut. 

In honor of Susan I’m going to attempt grace today. I say attempt, because Susan is smiling down on me laughing, knowing I will end up telling Lupus to #suckit rather ungracefully. But for her, I will try.

Grace is something I need more of anyway, so it can’t hurt. And when I think of Susan, I think of grace personified.

I’m also going to concentrate on these photos, because they make me smile HUGE:

…and this one, which will forever remind me of Susan and how even VIRTUALLY she could rock bald in a ball gown like no other.

Grace.