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.



Wednesday, December 25, 2013

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!

Monday, December 2, 2013

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






Monday, November 18, 2013

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:


Monday, September 9, 2013

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.











Wednesday, August 28, 2013

8 months old!

We all know it goes too fast, so I won't dwell on it. Instead, here is a photobomb of the eight-monther and my loves!













Thursday, August 22, 2013

One year.

One year ago I went to our anatomy scan.

One year ago I couldn't wait to find out if we'd be having a new little girl or boy.

One year ago I sat with my doctor and he explained that my baby didn't appear to have a nasal bone.

One year ago the words were spoken: Marker for Down syndrome...
Recommend Level 2 ultrasound...
Talk to your husband and decide what you want to do...


One year ago I cried as I shared this with my husband.

One year ago he held me, comforted me and helped heal my briefly wounded heart.

One year ago I made an appointment to find out more information.

One year ago I began my obsessions with google.

One year the waiting began.

One year ago my faith was cemented.

365 days.

Wow.

It seems impossible that the time has swept through so quickly. Yet, I am grateful that it has in a way. Because now I am here and ok. Owen is here and ok. We've made onto the other side stronger and more wise.

I knew on some level a year ago that Owen would have t21. But the coming weeks will be full of anniversaries: out first appointments with the perinatalogists, our choice in testing, our results.

One year.

Looking back I really would not change a thing.

Would I have googled less?
No. I found so much that shaped my journey and how I approached it.

Would I have worried less?
No. It would have been impossible in those moments.

Would I have told more people?
No. I was somehow brought to the right people at the right time.

One year.

We've come so far already and I cannot wait to continue on this journey with my family.

Here is Owen at 20 weeks and at 7 months. Love that profile!




Sunday, August 18, 2013

Where ya from and why are ya here?






Not to be rude, but I am just curious who happens upon my random thoughts (and adorable pics!)

If you would be so kind, would you comment below?  I'd love to know where you are and how you got here :)