So I realize I haven't said much about the charity album on here lately. So I definitely wanted to use today to catch everyone up. First of all I have gotten such an awesome response of super people that have signed up to post about the album on the day of the release. I wish I had a math whiz to figure out the power of that reach when all of these blog posts, and tweets, and facebook thingys smack the internet in the face with the buzz of a billion angry bees (I don't have facebook so I don't know what you kids call sending out a blast, something about a wall). According to my email inbox I have 298 people officially signed up to post about the album so far. In case you are new here and have no idea what I am talking about, please take a look at this post RIGHT HERE. and if you feel so inspired, I would love to hear from you. If ALL the people that came here to look at Maternity pictures joined in, we would really make a serious impact.
So where am I on all of this album releasing business?
Officially I am waiting on the last 4 tracks to come in, and then the album will be sent off to be mastered, the album art finalized, and and then I will submit it to i-Tunes for release. That might sound like a lot, but it isn't. OKay? It's almost finished! :)
So for now I am going to start putting all of your emails together and working on putting the release post together for you so things are painless and proper.
I will be announcing the name of the album and show off the art in the coming weeks, and release one more song for a preview. So as I wait for all of this to come together I will be building the hype machine, so that means anyone that has any ideas to word spread, please reach out. Seriously hit me up and bug me. This isn't a whisper campaign with crossed fingers that something cool happens, I would like to be loud and proud of this work and this cause.
I am happy to announce that I am working hand in hand with PRISMS throughout the release to raise awareness and to provide good info about Smith Magenis Syndrome. During the week of the release I will be sharing essays from some parents that have raised children with SMS, and some stories from parents who are just starting down the road. It is something I don't really talk about here very often and never in much detail, so to really paint a picture of a day in the life of SMS I will be sharing their stories here.
A question I am not sure I ever answered or made clear was: "why I am doing this charity album?" Beyond the obvious reasons of filling with an urge to do something that might help when I was told there is nothing I can really do, I wanted to make a direct impact on creating a bigger louder source of information for parents that are just given this diagnosis. Often times Cole and I have to print out the basic info on SMS to take with us to Doctor visits because they just don't know anything about it. So while we go to see specialists, we spend the better part of the visit watching them read the info we bring for them. It makes you feel crazy. How confident would you be if you showed up for a triple bypass and your surgeon was sitting with a beginners guide to the heart as you are gassed to sleep.
Cole got the news about LB's diagnosis when she was 23 weeks pregnant with Tessa, she was at work in the middle of a shift, and the developmental pediatrician had been calling to discuss the test results from a recent genetic test that The Littlest Buddy had recently taken. The Doctor had no knowledge of SMS to share with her, she just passed on info to see a geneticist, and mentioned there is a long waiting list to see her, so she should make an appointment immediately. This Doctor was trying to read her a definition out of something and was having a hard time pronouncing the name of the syndrome. Cole was like: "What is it called? What are you telling me? My wife was on the phone, AT HER JOB, and the Doctor gave her this news OVER THE PHONE with barely an explanation. Who does that? While she listened to the vagaries being delivered, she jumped on the work computer and found the PRISMS site. She hung up with her, and called me. Cole and I sat on the phone, and I listened to her read me the characteristics of SMS through tears and worry, and it was PRISMS that first explained what SMS was, and introduced us to a wealth of info and answers. It was the first place we found real answers about anything. The PRISMS site lead me down the right path and I was able to get my hands on some case studies that really zeroed in on SMS...
So while reading through as many case studies as I could get my hands on (there aren’t many) I decided that I had to do something to raise awareness and funds, so that when other parents are delivered this news, they have access to good information, and that means more case studies and research, and that means more money. And so this is what I am trying to do. That first few days of the diagnosis felt frightening because it took us so long to really grasp for ourselves what was going down. Let's make that go away, let's make that not happen to people anymore.
So if you are interested let me direct you one more time to the info to sign up to help spread the word about this release. Take a look here and thanks in advance.
All the Love in the Universe~ Me
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