Our journey through a prenatal Trisomy 21 (Down syndrome) diagnosis and beyond

I wish it were possible to recognize at the beginning of our life’s story what an incredible journey we are truly on. If so, I would have sat down years ago and begun documenting all the ordinary and extraordinary events in this amazing life I have been blessed with. Sometimes, though, it may take just one more thing to open your eyes into the beauty of the life you have led and causes you to pause and truly count the blessings that are now so many they will never be enumerated.

If you are just joining us, please go back to September 2012 to get caught up.

Tuesday, March 18, 2014

Mommy's New Adventure -- Part Two

Mommy's New Adventure -- Part Two

A few months after the book project started, a friend from our Rockin' Moms group approached me about something that was also stirring in her.  Another DO SOMETHING feeling.  Our hearts were in the same place and from it came a new national organization that we are proud to be launching this World Down Syndrome Day, 3/21:  Down Syndrome Diagnosis Network

Our aim: to inform, connect and support moms with a new diagnosis for Down syndrome.  There are many awesome resources for parents in the DS community, but with more women having prenatal testing, more are finding our sooner and we hope to be a resource for them.

To support moms, we will continue to grow our Rockin' mom small groups on facebook.  This is truly a special place to connect to with others at the same point in the diagnosis/birth experience.

We also provide information and resources that can be critical for families during the diagnosis phase.

In addition, we aim to support moms have conversations with their doctors about the diagnosis conversation.  We will encourage and support moms in giving their doctor feedback that may also support how they approach diagnosis conversations in the future.

This has been an INCREDIBLE journey.  To create something so meaningful and close to our hearts with a group of such intelligent and thoughtful people has been another life changer.  I have new mentors that research and write and CARE so deeply about these issues.  We want this world to be all that it can be for our kids and to be a small part of that is fantastic.

Mommy's New Adventure - Part One

Mommy's New Adventure

In a busy year, I have felt a calling.  A calling to DO SOMETHING.

The first is a project that started simmering a year ago.  My dear new friend, Joelle, from across the pond and I got an idea to write a book.  We wanted there to be a resource for new moms that wasn't just all the beautiful parts of having a kiddo with DS (there are LOTS of those things!) but also the realities of the feelings and emotions that come with this journey.  Now, a year and almost 100 families later, we have a book, website and facebook page!


{Unexpected} is a collection of stories that include real-life accounts from families who have received a diagnosis of Trisomy 21 (Down syndrome).  Families from around the world share what it was like for them to receive a prenatal, birth, or uniquely timed diagnosis, and those families with a potential but unconfirmed diagnosis share their experiences as well. Readers will follow along as the contributors describe the many facets of their diagnosis experience and the range of emotions that came with it.

A year old!!

I know... I have done an awful job of keeping up this blog.

That has been a criticism some of us "special needs moms" hear sometimes; everyone stops blogging as kids get older.  THEN, new parents assume it is because life is awful and terrible and unbearable and there is NOTHING but SUFFERING and MISERY to write about.


The REAL story?  We are so busy leading a normal life that I just can't manage to find time to sit and blog. 

Owen is 1!!!

So, here we are.  Owen is a year old!  What?!  Yes. I can hardly believe it myself.

He started crawling the weekend of his birthday and now he is cruising everyone.  The squirt pulls up on everything and loves to get into anything he can.  (pretty typical, huh?!)  You can also see how much he "loved" his first birthday party!

Milestones (kind of a dirty word to me these days) have been met and Down syndrome doesn't seem to be as big a deal in our lives as I initially thought it would be.  In fact, one of the kids said one day, "Most of the time I forget Owen even has Down syndrome!"  Words that melt this mom's heart!