Monday, July 8, 2013

Hiatus...Part Thirty Seven

This blog has been on my mind.  Not all of the time, but regularly. I feel obligated to it, I carry it. I have had dozens of posts pop up in my mind over the months that I 'intended' to write, but never put into words.


I think the answer is multifaceted. Um...I know it is.  So I'll just get to it and spare you any further BS-ing.

On a positive note- every moment of life isn't about CF anymore.  We have come to terms with how it makes us and Jackson different.  We have problems and complications completely unrelated to its role in our family. We're thankful that it doesn't dominate every waking moment. We're also thankful that in many ways, it gives us the gift of being able to see the value in the mundane. This is freeing! There's a big sense of being able to move on with our lives as a family. To accept the hand we're dealt, and by God, pound out some happiness both because and in spite of it. All good and fine, but if I've shared our woes and the fear and sadness, why should I not share our triumphs and successes?

On a scarier to share note- I have a hard time connecting with other CF moms.  Over the past three years, I've made and kept contact with a few. I joined a couple of social media groups, but can't bring myself to interact much.  It drives me crazy.  I get judgy, I get irritated with what I think they *don't* know, I get annoyed with questions I shouldn't get annoyed with. And by 'get judgy'....I mean I think they're dumb. Before you nail me up, hear me out.  I know this ISN'T because they're dumb.  I know that it's really MY problem.  I don't want to see myself as one of these people, facing this life, with so many questions, so much uncertainty.  We have reached a point where CF is something that is part of our everyday life.  All the drugs, all the treatments, all of the headlines about transplant laws and the deaths of young patients and drug breakthroughs, I tell myself that's just how it is and I can take it all in stride.  That's a double edged sword.  One can't go about day to day life FEELING all of the feelings that come along with living life two steps closer to death than everyone else I actually know.  So I manage to remove myself from it. I'm glad that I'm able to realize that, and it's not really something I'm proud of. But it's kept me from engaging the way I used to and sharing our story.

And as always, we've been busy.  M & I have both been in school. I went to Massage Therapy school and opened my own business(!), and M is on a path to a nursing degree right now. I've always been a circus act, but juggling was never my strong point.  It's not one of my best attributes that moving on to new things frequently means leaving behind things I didn't really mean to leave behind.  I'm always in search of a way to do everything, and as soon as I realize I've left behind something I didn't mean to, I drop something else to pick it back up. Now, no one can do everything.  All I'm saying is, I have a short attention span, a hard time prioritizing, and a tendency to WAY overcommit myself.

So for the tenth time, I'm here to say..Oops, sorry.  If anyone still reads this site, I'll be trying to share more. It may be more the life of a family with CF than coping with the diagnosis of CF.  It might bore you to tears. But I'm going to give it a shot either way.

In love and light,


Friday, March 22, 2013

2013 "Top of Our Lungs" Announcement

Well hey there. Good to see you again. I'll give a brief update on all the happenings since I last checked in with you lot, but I'll have to do it another day. Today there's business at hand. I've been putting off this announcement for a while. I've been feeling a touch defeated by it, or rather, it makes me confront the fact that I am forever taking on more than I can handle, somehow believing that sheer willpower will MAKE EVERYTHING WORK! We were planning to have our fundraising event next month, another live music and art auction shindig to raise money for our Great Strides walk for Cystic Fibrosis. But I haven't been available to put in the hours in order to set things up, generate interest, grab sponsors...April and May are just not going to happen for us this year. I just don't have the firepower to pull it off, and I'm not going to half-ass it. However, I'm not waving a white flag. In truth, it doesn't matter WHAT time of year we raise money. It's all going to the same place. I frankly don't care about being the biggest fundraiser in my area or earning prizes or any of that. What I want is to establish an annual event. One that people look forward to and truly enjoy. I feel like we're lacking a sense of identity and excitement, so I'm searching my brain for what we should do that is US, that represents our fight and our fire, and makes other people care about the long haul work against CF. So I've got my work cut out for me, and am aiming for June-July right now. This DOES NOT mean we aren't doing the Great Strides walk, though. We'll be meeting up at Six Flags as usual, and meeting for lunch at Twisted Root Burger Company afterwards. If you are looking for ways to help us fundraise this year, let me know. If you have ideas for how we can better fundraise, let me know. If loved or hated something we've done in the past, let me know! I need some collaborative brainpower. As soon as I can nail down some names and dates, I will officially announce what this years fundraiser is going to look like. Thank you for the continued support, and bearing with me through the less-than-organized state of things at the moment. Amy