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 [...]
Mom Report: Perfect Ten, on the pain scale.
Yesterday Billy noticed me fixing my morning coffee and asked “so it’s a double coffee day?” as I dropped two frozen espresso shots into the cup. And then lectured me on how coffee is a “want” and not a “need” (they just studied wants and needs in social studies, we need water, air, food, etc.). [...]
Wow, That Girl is Tiny!
By Kirsten A. Smith As an infant, I was diagnosed with Russell-Silver Syndrome, a rare growth disorder most prominently characterized by body asymmetry. Basically, everything on my left side is smaller than everything on my right side. For example, there is about a 1.5 shoe size difference between my feet. Kids with RSS seldom make [...]
Parent Essay: It All Happens in the Grocery Store.
When you have a special needs child, (or in our case, special needs children) often times you get messages from the “Universe”. Life is so chaotic and crazy that you just can’t be bothered to stop and listen to people anymore! You can’t handle the things that regular people have to say, so you just [...]
Are vacations allowed when you've got a sick kid?
Prepare to be shocked, or at least to mildly “tsk tsk.” For almost three years time, my husband and I did not leave the kids and go on a grown-ups only vacation. All that changed last weekend, when we left the kids for almost 72 whole hours. [This almost three years lag violates all of [...]
A Rare Disease Thriller?
If you like thrillers, you’ll love this article. If you like thrillers within thrillers, you’ll like it even more: http://www.nytimes.com/2009/08/18/health/18tran.html?pagewanted=1&_r=1&ref=health Of course, if you were Jessa Perrin and had Wilson’s Disease (link to http://digestive.niddk.nih.gov/ddiseases/pubs/wilson/) — which affects only one in every 30,000 people — or one of her loved ones, this would be a lot [...]
California Health Care Budget Crisis Threatens Life of Child Dying From Rare Disease
LOS ANGELES, California (CNN) — Anthony and Lisa Leoni have little time to worry about whether California’s budget crisis will affect their daughter’s life-sustaining care. A steady stream of nurses, caregivers and therapists visit 12-year-old Jessica at home around the clock. Jessica suffers from a rare and fatal disease called Niemann Pick Type C. A [...]
Fundraising For A Rare Childhood Brain Disease – One Uncle's Journey to Make a Difference
This past year has been a year of uncertainty, rejection, and frustration day in and day out for both Matthew’s life and his family. Hearing a constant “NO” from insurance and literally fighting with these companies is more than exhausting. Matthew was born with a rare brain disorder called subcortical band heterotopia and needs highly [...]