Friday, February 29, 2008


No, you haven't stumbled onto a blog about the ABC show "Lost," though I am a huge fan. I'm writing about the many people who have found me through Soren who sound so lost.

In the past two weeks I've been contacted by 6 different people I've never met before who have either found this blog by searching for information on Infantile Spasms or stem cells, found me through friends of friends, or approached me personally upon seeing Soren.

1) A family in Dallas whose daughter was recently diagnosed with Infantile Spasms.

2) The daughter of a co-worker of a mom from Mo's school.

3) A mom who saw Soren when we were out to lunch and was interested in his cool seating system.

4) A parent from Wisconsin whose son also has IS.

5) A "stranger" at Soren's horse therapy.

Now this last one was a doozy. The woman I met yesterday is the step-daughter of a man we met almost a year ago when we were up in Ventura for Mo's birthday. He approached me when he saw Soren and told me about his granddaughter with special needs. We had a few email exchanges. Then yesterday, Soren and I were at horse therapy and a new mom was there with her daughter. She heard Soren's name and then asked me, knowing that this sounded strange, if we'd met a man a year ago while we at the Pierpont Inn! Amazing!

And all these people have two things in common--a child with special needs and the feeling that they are the only ones in this situation. With each person that contacts me, I'm sad that we are all in this situation but I'm glad I'm there to talk or write to them.

There are so many families out there whose children are getting diagnosed with seizures or some other sort of ailment that will profoundly affect their ability to learn. Every state system is different. Systems are different within each state. It's all confusing. You don't know what to ask for for your child. You don't know what's too much or too little. As with any other big system, different people tell you different things. For those of us with little options, we're willing to try anything but don't know what works, what doesn't, and when to take a chance.

But thankfully, because of the internet, we can all chat with each other, share information, and assure one another that we're not alone. Aaron calls them our fellow travelers.

Well, fellow travelers, please continue to contact me and approach me and will tell you what I can about our journey with the Captain of our ship, Soren.


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