Why can’t you be more like Ellie?

Even though she has an undesired, greatly feared disability, I sure do think, “Why can’t you be more like Ellie?” a lot. I was scared of her before she was born. If I’m being honest, I am still scared of her. I obsess about her Down syndrome making her seem less than everyone else. I…

Motormouth

I talk a lot. I think it is likely the thing that drives my husband most crazy about me. I always need to talk about ‘it’ – whatever ‘it’ is. I have a master’s degree in communications, for goodness sake. I spent a decade in PR and non-profit development building relationships that I maintain even…

What did I do to deserve this?

Sometimes I look at the kids and see these incredible angels who I can’t wait to get my hands on. I want to soak in every word of Jack’s elaborate, creative, never-ending stories about dinosaurs and snuggle my big, squishy baby boy Gus. I want to always remember every detail of the path to Ellie’s…

Walking the Line

All day is a balance between letting go and holding onto breath, always waiting on the other shoe to drop. Hope is the mantra on repeat. Everything is going to be ok and it’s all under control, when actually, nothing is normal and it never will be again. Days are spent celebrating both big and…

Having Your Cake and Eating it Too

It means wanting the benefit from two possibilities when you can only choose one. Parents, teachers, therapists, experts, researchers. Pretty much everyone in the special needs world talks about the benefits of inclusion.  According to specaileducationguide.com, inclusion means “securing opportunities for students with disabilities to learn alongside their non-disabled peers in general education classrooms.” I…

Special Assurance in Unusual Times

If you are like me, you have exhausted all of Pinterest looking for sensory-friendly, educational activities while at home social distancing. Whether or not your kids are back in school this fall, parenting during the pandemic is hard. This is new territory; every decision seems impossible and there is even more added for us to…

Let’s Go Play

We were at the library when my husband Ben asked me out on our first date. I was leaving from a meeting in one of the conference rooms when I ran into him looking at the used books for sale. I walked over to say hello, and he wrote my phone number down on the…

Better than Bad

I took Ellie to meet her new teacher and to visit her new classroom. Her new year of school starts on Monday. She has been at home with me since March. Other than teletherapy to keep up with OT, PT and ST, she really hasn’t had a lot of connection with school. She was excited…

Change is hard.

This week marked the end of an era of sorts for Ellie. It is the official end of her school year and on Monday, she starts in her new classroom with her new teacher and therapists. I already knew that each year she would move to a different classroom with a new teacher, but I…

Ensuring Special Needs are Met

When my daughter Ellie was born with Down syndrome and two heart defects, we were lost on where to start to get her insured. As any parent of a child with special needs knows all too well, dealing with insurance is frustrating. The rules are confusing and ever-changing making sorting through it all a full-time…