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: Ivy Joy
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…
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…
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…
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…
Different types of feeding tubes…
Today’s feeding tube awareness is something that I definitely didn’t know before Ivy. There are many different types of feeding tubes! They are named based on where they enter the body and where the other end of the tube rests. OG/OJ tubes enter the body through the mouth. NG/NJ tubes enter the body through the…
Why does Ivy have a feeding tube?
It’s feeding tube awareness week – something I was so unaware of two years ago. Oh how this sweet girl has opened my eyes! I’ll be sharing about Ivy’s feeding tube all week so if you have a specific question, drop it in the comments! **Why does Ivy have a feeding tube?** This is the…
What my daughter with Down syndrome has taught me…
When we think of ourselves as parents, one of our main jobs is teaching. We teach our children to dress themselves and tie their shoes. We teach them how to be kind and polite. At some point in our parenting journey, we realize that we are learning too. As a mom to a sweet almost…
My Incredible Ivy 