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…
Category: 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…
Holding her with open hands…
I remember when we brought Zoe home from the hospital at 3 days old. It didn’t seem like we should be allowed to just walk out with this tiny human, fully responsible for her life. I put her bassinet next to my bed and woke up several times each night, frantically feeling to make sure…
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…
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…
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…
My Incredible Ivy 