THE BEST GIFT OF ALL – A HUG! JOIN THE CHALLENGE TODAY!
We all know that relationships are what really matter in life – not piles of money, fancy houses, or impressive job titles. We also know that there are some things in life we just can’t control – like our sweet children’s health. What’s a parent to do? I focus on what I can control – [...]
Brothers And Sisters Need Support Too – ForeverSibs!
ForeverSibs provides support for siblings of kids affected by rare disease! ForeverSibs was founded in 2009 in an effort to acknowledge the siblings of children who are affected by a rare disease/disorder, or autism. The mission of ForeverSibs is to honor and recognize the unique role of brothers and sisters of children with medical and [...]
National Nurses Week – Thank those that work to help our kids!
Every year from May 6th – 12th the American Nurses Association celebrates National Nurses Week, and the 2011 theme is “Nurses Trusted to Care.” My favorite quote honoring nurses is, “You heal sometimes. You relieve often. You comfort always.” Camus. A special thanks goes out to all the fantastic school nurses who provide children everything [...]
Judgement
Parents of special needs children are continually scrutinized and judged by others. Those who have not been affected by a child with a rare disease have no idea the difficulties our children and we as parents face on a constant basis. I remember when Ian was younger, the words of judgement I would hear from [...]
A New Year's Wish – from RARE
The holidays are over, the decorations come down, the resolutions that we have committed ourselves to have begun; the diets, saving money, taking more time out for the family, laughing more, going to church, making time for friends, hitting the gym, working less but working smarter, the list goes on. Sometimes just trying to prioritize [...]
Perspectives From an Exhausted Mom
Decision. A word. An action. A finality of choice, sometimes met with indecision and fear. Sometimes the decision coaxes our self to make even more choices with certitude. We make decisions every day. Some decisions are reversible, most are final; and whatever we decide – we are always in resolve of the conclusion. I awoke [...]
Rare Disease Family in the Limelight! The TODAY Show – Tuesday June 22
Derek Seymour, an 11 year old boy with the rare disease Joubert’s Syndrome, will be on the NBC TODAY SHOW tomorrow morning JUNE 22ND. Please tune in and spread the word about our rare disease friends giving national attention to our community. Al Roker will be visiting the Eagle Mount program in Bozeman, Montana where [...]
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 [...]