Sometimes it can be so hard to know what to write. Other times it is as if I can't stop writing. In this case I have needed some time to sort out things in my head. There has been a whirlwind of activity with Emily turning two, and a sense of urgency that seems to recoil my life in preparation for the next set of battles to endure.

Emily is two - what a relief! "2" doesn't mean we are out of any dark valley, or that Emily will "be ok" b/c the facts remain the same, no matter how much joy we feel - or sorrow we feel we have avoided, SMA is terminal - that's the reality. The upshot to that is the longer these kids live, the more likely it is that their immune systems will survive the inevitable respiratory infections that occur throughout the year. --> I don't mean to be depressing or negative - maybe it's because Linnea would have been a beautiful little 4 year old in only two days -- I don't know, but it has been a tough couple of weeks.

Maybe it's like Buyer's Remorse. I've invested so much effort into getting a van, having Emily's party, communicating with medical people, anticipating the changing weather which will cause respiratory issues - thinking of Linnea. Too much. Since many of these things, thankfully and miraculously, have come together I find myself sorta depressed -- or stressed maybe - at the lack of something to fight for. This can be dangerous b/c then it turns into finding things to fight ABOUT.

So - we are getting the non-profit setup very soon. Paperwork for incorporation is in - filling for 501(c)(3) status is next. I can explain what we hope to accomplish in another post, but keep eminnea.org in your bookmarks b/c there will be a site there soon. Our non-profit will be called "Eminnea Inc." which, as you may have guessed, is a cross between Linnea and Emily.

Something to think about: I recently hear a discouraging story about a Pulmonologist in Knoxville that said nothing should be done for Type I SMA kids. In fact, he went as far as telling the Type I child's father that he doesn't think society benefits from their existence!! As you can imagine, and may be feeling yourself, I was INFURIATED at such a remark... and saddened. My heart just sinks down to my callused toes when I hear things like this. So, I started thinking (I know, scary) - rather than calling that guy and telling him to go to hell, there must be a more loving, convincing, and diplomatic approach. It started like this: Why don't I email all the people that keep up with us (up to maybe around 300) and know Linnea's and now Emily's story, people that have CHOSEN to hear updates on Emily's condition, and ask them to write a paragraph or so on how our story with SMA has impacted their lives in a positive way. Then I'd compile them and send them to Dr's like this one in TN.... hmmm..... now THAT is an idea!! Why don't I don't I do that?! Why don't I make this my first book project and a function of Eminnea Inc. to raise money for our projects and spread awareness about SMA in a positive way? In fact, why stop there? The entire world could use volumes of incredible and positive stories from people on the periphery of disabled families that show how their existence in society is not only beneficial, but pivotal to the growth and maturation of humanity. Sure, we parents can talk all day about why our kids should live, and we will continue to do so - but, the testimony of the onlookers - the passers-by that want to stare, but aren't sure if they should - the public person who's heart hurts at the sight of an invalid and wishes they knew a little more - are the compelling stories. These are real feelings from real people that aren't captured in time - they are simply fleeting thoughts that, for the most part, are never resolved. I want to hear these stories - even if they have nothing to do with Linnea or Emily. I want others to hear these stories, so their lives can be changed.

So - if you have a moment, I'd encourage you to put some of your own thoughts into writing and send them my way. I will be compiling them for a future book on the benefits of disabilities in society. You can send them to: bookproject@eminnea.org

Peace <><


Mike A said…
I think you should write a book man. Your "ramblings" are actually quite profound.