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…

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…

Have the Conversation…

A couple months ago, something happened when I took my kids to the park. It was an experience that I have lived from another side. Experiencing it from this side, from the side of a special needs mama, it broke me. When I posted about it on social media, I learned that I was not…

Ivy’s Health Journey – Part 2

We had so much fun becoming a family of 5 over the summer. Besides being slow to gain weight, Ivy was doing well. She was so tiny and snuggly and I loved every minute of being her mom! Excuse me while I add too many pictures before I keep going with the story… In September,…

World Down Syndrome Day!

The date tomorrow is 3/21… World Down Syndrome Day! This day is officially acknowledged by the United Nations as a day to celebrate, educate, and advocate for individuals with Down syndrome. This particular date was chosen because it signifies the 3 copies of the 21st chromosome that people with Down syndrome have. People celebrate in…

Ivy’s Health Journey – Part 1

I haven’t been very good about updating the blog over the past couple of months! My goal is to chronicle our experience having a child with Down syndrome. The past several months since Ivy’s birth has been a big learning curve for me, trying to balance being a mom of three, working full time, and…

Down Syndrome Awareness Month… Why?

I’ve been wanting to write this post for awhile, but as is usual for me, I struggled putting words to my thoughts! Part of why I struggle to write, is that there are so many ways my brain wants to go and I have trouble figuring out how to organize it all! Please bear with me…