Friday, August 24, 2007

Emily + Sitting

I thought I'd share some pics of Emily. After realizing that she has some serious bone density issues I started thinking, "Man, we need to get her in to some seats and standers pronto!" So, what we realized is that she handles it quite well.

Here is a pic of her in her Tumble-form

Another in the Tumble-form in her therapy swing

Here is a pic of her in her EasyS

Does anyones else use the chair this way? If we put the chair all the way up in a sitting position, but tilt the base all the way back, she does well and is able to use the tray. We were actually quite amazed!

I also did a little video of Emily in the EasyS

I am sharing these b/c Emily was NOT able to do this a year ago. I can't quite explain that, but she could not tolerate these positions well at all. Now she can. :) We are continually amazed with her. When she was diagnosed at only 5 weeks old she was digressing fast, so we were never expecting to see her like this. Hopefully the therapy we are getting into with Kennedy Krieger will take her capabilities and make them even stronger.

Peace <><

Monday, August 20, 2007

2nd B'day Pics!!

Hey everyone - Pictures from Emily's 2nd B'day party are up!!! Please visit Emily's Albums (I just made some changes and the link is different now) to see the photos.

Peace <><

Moving on

I wanted to make another post to move us on from Linnea's B'day - so here is another post. :)

Soon I will be putting some photos of Emily's B'day bash, so please be on the lookout. If you have any pics from the party and wouldn't mind sharing them - please send them to us and we will include them.

Also - a bit of clarification on the book project for Eminnea Inc. I have already started receiving some writings about disabilities to be included in the book, so thank you very much for the time you have put into this project. I want to add some direction, just in case anyone is confused -->

We have all seen or known someone that is or was disabled. We have all felt and thought something when we saw that disabled person. Some of us have learned life lessons from the disabled people we have seen or known. Some of us have learned to love more. Some of us have learned to live more. Some of us have learned to be more accepting. And, some of us have learned to accept ourselves.

What have you learned from your own interaction with disabilities? What has that interaction taught you about your own life? How has it changed your life?

An example (quick and straight from thought to keyboard, so be forgiving) - I have known only a few people with CP (cerebral palsy). To be honest, most of my life I felt very uncomfortable and awkward around someone with CP. I didn't know why, but I felt weird. I didn't know what to do if I saw someone with CP! I didn't know if I should stare, look away, ask questions, cry, pray for them, avoid them, talk to them -- if I did, how would I talk to them? - would they understand me? -- these thoughts would go on and on... I didn't know what to do. As time went on I realized that it wasn't CP that was uncomfortable to me -- I was uncomfortable with ME. I began to understand how unaccepting I was of people that were unfamiliar to me. Not just someone with CP, but people in general. I was ashamed with myself for only feeling comfortable with people similar to me in size and shape, athletic ability, musical ability, religious beliefs, etc, etc. The presence of disabilities in society teaches me to love people for who God made them to be. Disabled people in society have taught me to work hard and not take for granted the things God HAS given me. Disabled people in society have taught me that there is NO way I can fathom what someone else can accomplish with the resources they have. But, most of all, the presence and accomplishments of disabled people in society have taught me to cherish, love and support my daughter, Emily, b/c there is no telling what she too can accomplish amidst the challenges of her own life.

That is what this book is about. :)

Peace <><

Wednesday, August 15, 2007


Our second daughter, Linnea, would have turned four today. We're thinking about her...

Peace <><

Monday, August 13, 2007


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 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:

Peace <><