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.

Thursday, February 19, 2015


I know, totally not a word, but it is now :)

Today I am watching moms celebrate on the original rockin' mom group page about how much the love, support and friendship has meant to them over the past two years.  It is truly humbling and tear-inducing.

To hear from so many women about the power of our little groups is unbelievable at times. Mostly because I started the group because I so desperately wanted to find a place to "fit."  Owen was a few weeks old.  I wasn't a new mom, by any definition, but so many slight nuances just weren't in my parenting experiences yet.  I had quit my job the year before to stay home when Colton was born and was still finding my place in new friendship circles that weren't centered around my career. I found so much support online through BabyCenter and reached out to start a group with other new moms. And that, as they say, is how it all began.  Within a few weeks, we had over 100 moms with babies born with Down syndrome in 2012/2013.  We kept it small and began sharing our lives, tears, smiles, fears, celebrations.  Instant connections made around the world and friendships forged across miles. Incredible.

The whole concept is simple, really.  A place for moms to come and share life. The only catch, you have to have a baby with Down syndrome.  The problem....When we stopped adding moms, I started getting more requests and some were not too happy that we wouldn't include them.  You know how those negative things stick with you, even through all the wonderful ones? When I told a mom that I would help her start a new board for the next set of moms, she replied, "That sounds really inclusive. How ironic."  UGH.  After some time, I decided there really wasn't anything (besides sleep, of course) stopping me from creating a new group. I enlisted some moms to help run it, got it set up and started adding new moms there.  Within a few months, that group filled up too, so you can imagine where that led...Now, two years later, we have 15 rockin' mom related groups including almost 1400 moms from around the world.

While this all may sound wonderful, it also comes at a cost.  The cost of caring for and investing in hundreds of people and their families.  I feel like an auntie to hundreds of children and a sister to their mothers.  We have celebrated weddings and new siblings, we have mourned the loss of rockin' babies and their loved ones.  We have cheered at each milestone reached, no matter how seemingly insignificant; we have comforted the anxieties, worries and stresses that we also feel.

The real gift: Each other.  Knowing we are not alone in any of this. 

I didn't have a strong local experience. But I did have a wealth of support available 24/7 from moms in my shoes. Having moms from a variety of backgrounds with wonderfully diverse life experiences has benefited us all and I can never say thank you enough to them for sharing their lives with us. 

Two years has quickly passed and I cannot wait to see our anniversary celebration in the years to come <3

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