{Embracing My Inner Lunatic}
This week my mind has been opened to the world of caring for a child with non-life threatening medical issues. It sounds crazy to say, but I think caring for Gavin and his intense ICU level needs was so much easier. I’ve spent the greater portion of the week making phone call after phone call, [...]
The Process of Saying Goodbye
Living life beside a child dealing with chronic/terminal illness is a life I’m not sure anyone would ever wish upon another human being. It’s a life that often begins with saying goodbye — a life where every moment is questioned to be the last. If you look really hard — Is it possible that this [...]
Wanting What Others Have…
The other day I attended an absolutely beautiful baby shower for a friend who will soon welcome a little girl into this world. I had no expectation on how I would feel going to a baby shower, as this was my first one since my little boy died. There is something about being in a [...]
The Children's Rare Disease Network Launches Valuable Informational Blog
R.A.R.E. Blog is a Place for Families Affected by Rare Childhood Diseases to Learn and Share Resources. Dana Point, Calif. (June 9, 2010) – For the approximate 22.5 million families with children affected by rare disease, a place to find and broadly share information with other affected families is vital. The Children’s Rare Disease Network [...]
The View From This Side…
In all honesty, I never once imagined that I would ever be on this side. I like to live life on the edge — defying the odds. I’m a bit of a control freak, but just a bit — maybe. When our world came to a sudden halt four years ago, with the early birth [...]
Chronically Cool Families, an introduction by Karen Owens.
I realized pretty early on in our journey as a special needs family that this world just wasn’t designed for families like us. I remember taking both of my children into a local Starbucks, as the stress of the day was weighing heavy on my shoulders and mommie just really needed a latte. I remember [...]
Living in a cup is half empty world.
We all have heard of the cup is half empty/full debate. Last week I was meeting with a group of moms and this very topic was discussed. We all went around the room and stated if we were a cup is half empty or a cup is half full type person. As the moms were [...]