Defect. If you just sit with that word a minute, what images does it bring up? I’m guessing they aren’t the prettiest pictures. Defect. Defective. Those words mean imperfect. Faulty. Wrong. They aren’t neutral words. In fact they are quite negative. But that is a word that we use when talking about brand new lives…
Tag: Down syndrome
Down Syndrome Awareness Month…
Imagine a world where we didn’t need to have this month. Where a diagnosis of Down syndrome came with a big CONGRATULATIONS instead of I’m sorry and maybe you shouldn’t continue the pregnancy. Where the worth of people with Down syndrome was never questioned. Where they were supported and given all the therapies and medical…
Disability is not a bad word…
Before Ivy was born disability felt like a bad word. A scary word. I tiptoed around saying it. Those perceptions bled into my actions and thoughts about people with disabilities. It affected how I handled Ivy’s diagnosis. After Ivy was born, it became a sad word. I didn’t want it to be a word that…
A letter to my typical children…
Dear Zoe and Eli… I saw your faces in my mind when the doctor said the life changing words, “Your baby does have Down syndrome.” My brain spiraled out in so many directions as the tears fell that day. What would her life be like? Would she live with us forever? Would she need open…
Representation Matters!
Representation. Every single human being deserves to see somebody who looks like them in movies, books, commercials, and toys. Unfortunately for far too long that has not been the case. People of all races, abilities, body types, genders, religions, etc. need to be represented in what we watch, read, and play with. Recently we are…
The Luckiest
They caught my eye as I was putting my bananas in a bag. Walking hand in hand they meandered through the produce section. One, an older woman with graying hair and gentle wrinkles. The other, a short young woman with almond shaped eyes that absorbed everything around her. They walked slowly, not in any hurry….
Why I want you to see my child’s disability…
This is something that has been on my mind for awhile. Trying to articulate my thoughts has been tough. As a community, a phrase that we use very often is ‘more alike than different’. We want the world to know that a person with a disability has far more in common with a typical person…
Why having a child with a disability is like competing in the Olympics…
Olympic competitors walk an exciting, hard, intense road. They often start training when they are very young. Some choose their sport, some say their sport chose them. Some even have their sport chosen by their parents or government. To become the best, they train for countless hours, year after year. They have coaches, trainers, doctors,…
Can and will Ivy eat by mouth?
This is another question I get a lot that doesn’t have a super simple answer. Technically, Ivy can eat/drink by mouth. According to the one swallow study we got when she was 3 months old, she needs liquids to be thickened in order to drink them safely. Her swallowing muscles have always been very disorganized,…
How does Ivy handle her feeding tube?
When she had the NJ tube taped to her face, she was still pretty little so she wasn’t purposely using her hands. She only managed to pull it out once which was good because while NG tubes can be replaced by parents at home, NJ tubes have to be placed in the hospital under a…
My Incredible Ivy 