It's funny. I just wrote the title of this post while sitting in the living room with the family and I had to get up and leave to retreat to the silence of my room, as I write about No Mas Silence. I need the quiet retreat because I need to really think about how I want to frame my words explaining why I am getting louder. To put it simply, I have finally found my voice. After years (14 now to be exact) of trying to find my voice online and letting plenty of other people do it for me, I finally said No Mas late last year. No Mas to caring if I lose campaigns because companies don't like my language, or my politics, or heaven forbid, ME. No mas to caring if people unfriend me on facebook because I support the 2nd Amendment. No mas to caring how many online friends or followers or likers I have. Maybe 40 finally caught up with me. Or maybe my beliefs became more important than my "popularity". Or maybe I just realized that after 14 years at this, my internet life really is a "jobby" (a hobby meets job). And a jobby is not worth the loss of my true voice. Whatever it was that pushed me over the edge, I am grateful. In the last few months you may have noticed I ...
My Hope For 2013 Simplified
And that is all I have to say about that Hope you have a wonderful, safe New Years and a very likeable 2013 ...
You Are Very Loved
Dear Wyatt Samuel, You probably don't know this but in two days your mom and dad will leave your 3 sisters behind in California and make a 12 hour flight to meet you in Russia. That's them: I have to be honest with you little guy, when your mom first started talking about you I thought she was C R A Z Y! I thought it was a phase she was going through. I mean, seriously, she is just coming out of the hard years with Hannah (your sister who also has spina bifida), she has 3 girls, and to be honest, things in their lives have been a bit rocky the past year or so. Why in heaven's name would she really want to adopt another child with spina bifida? One child with significant special needs is already so hard. I clicked over to your picture on Reese's Rainbow and I saw what she saw. I imagined you not having access to the medical care that has made Carter's (my son who was born with spina bifida) life as full and wonderful as it. My heart broke for you knowing that your future would likely be spent in an institution because you had a physical disability. But I still thought your mom was C R A Z Y and, honestly, I doubted she could ever pull it off. Boy was I wrong! Your ...
Meth Monday: The Devil Wants His Due
I struggle with whether or not I want to share my live journal about my latest round of medications since I often dance around the subject here and there I don't want to fill you in on all the gruesome details and I certainly don't want my blog to become about documenting my illness. I have always been and always hope to be the positive voice among some of the sucky stuff that my son deals with in having Spina Bifida. But as I teach him how many people have come together and learned so much from his story through this blog and Spina Bifida Connection, I can't help but note my own hypocrisy in not being more open with my own story. I am an over googler. When I want to know something about a medical condition, I want to know the exact precise timeline these things happen. Did I ever share with you that when my father passed away I sat there holding his one hand and with my other I was googling terms like "how long after the toes turn blue will his breathing stop". I am just the kind of person that needs a blueprint. The more prepared I feel the better I can cope. But when I google this for a blueprint I just see general talk. So, here is my experience for those of you looking for ...
A Gift of Time
Next weekend I start a year long treatment of a low dose of weekly chemo to get my body under control. It sounds worse than it really is. You take the meds once a week and can expect to be sick for a couple of days following, then have some good days in between the next dose. The goal is to trick your immune system into stopping the internal fight going on, wiping out the good with the bad. I've been told the biggest effect on my life will be a lowered, or compromised, immune system which may will put a damper in my social and travel life, cause you are all germy creatures. I am choosing to share this not because I want to hear the collective pity party. I'm posting as a way to set a universal intention. An intention to use this gift of a year to slow down. Take better care of myself. Read some books. Find ways to streamline my work life while building my business. Take a walk and finally get back to daily yoga or meditation. Eat and cook recognizable foods, removing as much processed as I can. You know, in general, get my act together. I am not going to lie. I am scared. Not at all about the new treatments. But about actually concentrating on myself. I am not comfortable ...