Amid the chaos, we’re also off to camp. Today, is our second day here – third counting check in and the wine and cheese social that was planned for the first day…that was new. Camp is a relatively new experience for us. This is our second year, and we’re in the mountains of Colorado with…
Category Archives: Rare Diseases
Our Role & words hurt
So I was thinking, draw 3 circles on a piece of paper. One inside the other, so really you have 3 cirles around each other(as pictured) The inner circle is our children, this is their culture of being a child with special needs. The middle circle is us, the parents. We’re not in the…
My Angel
I knew that my body was giving everything to this little person growing inside me. I knew my life would never be the same; that our lives would never be the same. There were no words to express the happiness I knew my belly contained. I knew that this little being was my angel; my…
Music at Mary’s Preschool
I have not formally introduced myself. My name is Chaney. I am Mary’s mom. Mary turned 5 in October. She loves music, horses, Dora and going outside. Mary uses a DynaVox VMax for the majority of her communication. She also has a trach and a g-tube. Mary is diagnosed with Arthrogryposis, Agenesis of the Corpus…
Tube Wars
For the past 20 years my daughter Melissa has used a NG tube as her primary method of feeding. There has always been much controversy about the use of NG vs. G-Tubes. My story offers our experiences.
When imitation isn’t flattering
My two year old has been in a stage of imitating everyone around her lately. As these things go, I find it pretty adorable. Until she tries to imitate her six year old brother. Not so cute anymore. Her brother, Will, was born with a rare chromosome deletion that few kids in the world share. There are…
Time Discovers Truth
Before I became a mom, I did everything at high speed. My long legs galloped through airports, trade shows, malls, corporate hallways- purposefully propelling toward my destination. I assessed people too quickly, rushed through conversations, and often missed the simple beauty of everyday life. Fast forward years later, when my second daughter Zoe was 5-…
Special Exposure Wednesday.
Apologies for last week. This was us: Earning us three days in the hospital but this was taken yesterday: I’d say she’s doing much better. Got something to share? Why don’t you join in this Special Exposure Wednesday. Please remember your comment love at each link you visit. Also posting at Three Ring Circus.
Birds of a Feather: The Special Needs Lunch & More BlogHer highlights
I left my 2yo medically fragile son for five days…count ‘em five days AND nights, to attend BlogHer’10 in New York City. It was business, it was pleasure, it was exhausting…you name it – I felt it. Mostly I felt terribly guilty about going, but given the awesome opportunity I just felt I could not pass it…
Making the Tough Calls
When does the risk outweigh the benefit? How do you decide if medical treatments for your child are more harm than good? Making the tough calls has never been easy, and apparently the weight of this burden never goes away. I remember my son, 4 months old, critcially ill and crying incessantly. Crying because he…
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