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.

Visit our website

 and Like us on Facebook!!

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.

Ha.

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!

To the "strangers"...

For some of the people who have made a huge impact on my life this year...

You have welcomed us into a community family.

You have been honest.

You have been cheerleaders.

You have been a shoulder to cry on.

You have been a soft place to fall.

You have given me points of reference (of greatness).

You have shown me the reality of this journey.

You have selflessly shared personal, intimate thoughts and details about your family and your life so that I could thrive.

You were strangers that quickly became some of my greatest friends.

You have been there in the middle of the day and night.

Some of you knew like us that this would be a part of your life story.  Others were surprised. 

Regardless, our paths have crossed and intertwined and for that I am so incredibly grateful.

Thank you to all my new friends this year.  Whether local or continents away, the footprint you've left in our life story will always be.

Merry Christmas and getting ready for the big 1!

The Gift of Possibility

I am joining with some incredible friends this month to share the gift of possibility.

Months back, a new friend asked me to join her on a new adventure.  We shared a passion for getting women REAL information.  We had a desire to connect with moms and families receiving a diagnosis.  We felt a calling to do something and work to change the hearts and minds of some in the medical community that viewed T21 as an anomaly to rid the world of.

And so it began.

We are now a dozen or so women strong and working out details and preparations to launch our new venture.  Until then, however, we have been working in many ways to support our mission.  Today, we invite you to join us in connecting with the medical community.  Send a holiday card and/or note to medical professionals in your area that you feel need to see what life with T21 can look like -- not the textbook version of all that may come our way, but what a snapshot in time looks like with our family.

Join us and make change in hearts and minds in your community. Share the gift of possibility.

2013 Holiday Card Campaign

Celebrating another new friend!

I've meaning to write this post for awhile, but it hasn't happened. This is the perfect time, though because Owen has a new special friend in his life: Miss Sherry! And this week is her birthday, so.....

♪♥ ¸¸.•*¨*•♫♪  Happy, happy birthday Sherry!! ♪♥ ¸¸.•*¨*•♫♪

We met Sherry through the I Run For program. It matches up runners with people that may not be able to run for themselves. Now, I was hesitant to sign up at first. I don't want to lead any of my kids down a path of "you'll never be able to..." But the friendships and genuine care/concern that I have seen on the sure are awesome. My new hope: someday O will run for someone who can't :)

I have met more families and feel like it is a whole new set of prayer warriors for our family. It has also been a cool way to spread the word about DS and what it is really like. I do feel the more people who can see our daily lives understand how little DS really impacts us each day. One step at a time!

There is a ginormous waiting list of runners who would like to be matched with someone to dedicate their runs to. If you feel the call, register yourself to run or your kiddo to be matched!

How to get involved:

• Irunfor facebook page
• Irunfor website

365 days.

I'm not sure how Thursday will have me feeling. Pretty sure it won't be any different, but one never knows.

September 12, 2012. 4 pm. Diagnosis confirmed. Our new little boy has Trisomy 21.

I've reread posts from that time this week. And I am so grateful that I wrote about it in real time. The pieces and parts that I've all but forgotten now and so interesting to read as I am on this side of things.

The clear memory from that moment was relief. We had an answer and could move forward. I was convinced we wouldn't get an answer at all; that we would be left hanging further. But no, my wish was granted that day. An answer.

Was it the answer I hoped for? No, I feared so much that I didn't understand about DS.

Was it the answer I knew in my heart already? Yes.

One year later my days and nights are not consumed with an extra chromosome.

A year ago, I would have found that hard to believe. Really hard.

But, it is true.

Nearly 9 months into the world of the 21st chromosome and life is more the same than different. And the differences really have very little to do with T21 and much more to do with 4 kids.

How do 47 chromosomes impact my life right now?

1. Owen has lower tone.  If you hold him, he is wonderful and snuggly.  Not real solid sometimes. He sits up for a bit, but after a while, will just face-plant forward or whip himself back. But he is getting there.
2. SuperO will be in his infant carseat a bit longer since he can't quite manage to sit up in the shopping carts yet. (Bonus, my right arm is in tip-top shape!)
3. I can become consumed with Facebook and all our new friends.  This is truly the most life impacting piece.  Getting to know these moms and families over the past 6 months has been life-altering in the best of ways,  But sometimes the dishes and laundry aren't done quite as quickly while I putter around online.  (Sorry dear!) Although the money saved in therapy bills surely balances it all out in the end...although with all the trips I'd like to take to meet moms and babies, this might not be the cheaper option....
4. ummmmmm....

That's it.  3 things.  All of which seem pretty minimal in the scheme of life.

But, if you told me that a year ago, I wouldn't have believed it.

Don't get me wrong.  This is not the case for all families connected to DS.

In the hundreds of moms I've had the privilege to meet, there have been (and still are) many medical ups and downs.

There have been scary moments.  There have been thoughts and prayers sent at full force to families around the world.

But I am sure you all have a story of a kiddo who has been sick. Really sick.  And most likely, they did not have Down syndrome.

Crummy things happen every day.  But for our family, DS is not one of those things.

But, if you told me that a year ago, I wouldn't have believed it.

One year later....I love deeper.  My kids. My husband. Myself.

One year later....I have more faith, grace, hope. These make up the cornerstones in my life.

One year later....I am quickly growing to be the person I am destined to be.

But, if you told me that a year ago, I wouldn't have believed it.