I'm a mother with a busy family and a struggling little boy, and together we are trying to navigate the world of Rare Disease. It's painful and tender, fascinating and devastating, and a lot of days it just plain sucks. With 4 vibrant, happy children and a husband who will stand by me through the fiercest of winds, I am happy. This is our story, and we are still writing as we go.

I am going to start this blog off by letting you know that I am not a blogger, my beautiful wife Jackie is the one that does all writing in […]

Sometimes I watch my kids and I wonder. I wonder if Lauren, Trevor’s faithful sister, ever gets tired of so much of the focus being on Trevor.  Given her sweet […]

So, it’s been about a month since we received Trevor’s diagnosis. Slowly, over the course of that week, everything changed for us.  The future of our family blurred, where we […]

I feel like I could make this a really long, dramatized, interesting post.  You know, pauses for effect and all that… But I really don’t feel like it. -and since […]

I don’t think this post will be long. I’m not sure what to say, and I’m frustrated, and I hate posting negative posts.  Jason encouraged me, however, to go ahead […]

Dear Trevor, 2014 was hard on you.  It was another year without answers, but a whole year in which you’ve grown, and your peers have grown, and you’re realizing that […]

We left so, so early in the morning. But… at least Trevor was excited. Two flights, a lot of Koen-squawks, and some lame Dunkin’ Donuts later, we arrived at DCA […]

A few weeks ago, a kind soul reached out to me on Facebook.  She said,  “Jackie, I read your recent post on your blog about your son that insurance denied […]

As in other lapses in posts, the reason there have been no posts lately is because there is nothing new to report.  We have been waiting since March for approval […]

People say knowledge is power.   I think I understand that today in some ways, though, perhaps it depends on how much knowledge.  I’m learning that just a little bit of […]