Welcome to the Club

I've been watching Season 2 of "Born This Way" on A&E, a reality show about young adults with Down syndrome. It follows their everyday lives, showing their triumphs as well as struggles. Every single episode I shed a tear, whether it's when Megan expresses her desire to have babies, when Elena and her mom go head to head, or the love Cristina and her fiance' have for each other. I love Sean's parent's humor and they remind me of Jesse and I, plus my boys are constantly singing "Shake Your Booty" by cast member John. I can't help but look forward to my future with Ellie. I'm learning so much from the parents who have walked this path before me. I'm also realizing I have so much more to look forward to. 

On a recent episode, Elena's mom was talking to the other parents about how hard it has been dealing with Elena's fragile emotional state. They comforted her, reassuring her that they are all there to help her through it. Then Rachel's dad said something that really hit home for me, and the tears started flowing. He talked about being in "the club". It is so true. We are in a club we never dreamed we would be in (unless you are Jesse and I and you literally dream your daughter with Down syndrome into reality!) And now I can't imagine not being in this club. It's something amazing that is for sure.

Just a little over a week ago I hosted a mom's lunch for local families. The Down Syndrome Network Oregon graciously sponsored the event and we had a huge turnout. There was about 150 people including the kids, all at my house! It was amazing! There were children from 1 month old all the way up to 15 years old. I was in awe watching the moms connecting and sharing their stories. All of the kids got along as if they had been playing together for years. It was a "heart is overflowing" moment for me. I also have to make a shout out to my mother-in-law Julie, my mom, and my best friends Jos and Allyn for helping me put the event together! I couldn't have done it without their help. Also, Jos took over 200 photos for me. Here are a few from the day, I had a hard time narrowing it down so I apologize in advance for the photo overload!

Helper Extraordinaires! My Mama, My Bestie, My Mama-in-Law

Ellie and her new buds :)

Babies galore!

Iris loving the pool!

Two beautiful girls.

Paula, one half of the amazing DSNO founder duo!

Brothers.

Little Miss Sunshine.

Cuties!

One of my closest local mama friends and her beautiful family

I am leaving Friday morning for a two night trip to Dallas, Texas to see over 100 of my closest friends. That sounds funny doesn't it? But it's true. We are all moms to children with Down syndrome. We have been each other's sounding board through surgeries, struggles, delays, successes, GI issues (some of you know more about this than you'd like), and navigating services, inclusion and more. This event is put on through the DSDN and is called the Rockin' Mom Retreat. We will have 3 days and two nights full of laughs, tears and relaxation. The goal of the weekend is for the moms to connect, inspire, and recharge. To say I'm excited would be an understatement. Here's a few photos from last year's event in Minneapolis, Minnesota.

1st Rockin' Mom Retreat - 2015 - Minneapolis, MN

Elevator fun!

The late night crew!

There for each other. Always.

This is our tribe. As our children grow, we will have each other through every  milestone, whether locally connected or connected virtually. The future isn't scary or lonely when you have others who get it. Our kids may end up living together someday, like Steven and Sean from Born This Way. Speaking of Sean I get to meet his Rockin' Mom this weekend in Dallas! And I wonder who will be in the first "Rockin' Wedding", I have my sights on Mason and Ellie for that title. 

I don't know what Ellie's future holds but I do know as her mom I am not alone, and never will be. How is it that a little extra chromosome can bring together people who would have otherwise never met? I also can't imagine not having my now-best friend Jos. Our girls brought us together and I'm forever grateful for that. 

Sweaty BFF's but having fun!

Have you found your people yet? The first step would be reaching out to your local group for face-to-face support. If you click this link, it will show you the organization closest to you. We have the DSNO and NWDSA local to us here in Oregon, both are amazing organizations that provide so many resources to families. And if you are new mama, "welcome to the club", you will love it here I promise. When you are ready, please find us on Facebook at the DSDN and join one of our many private support groups. And remember, you've got this, and we've got you.

My song for this week is one that reminds me of my fellow Rockin' Moms. I love you ladies so much and can't wait to see many of you on Friday!

Count on Me - Bruno Mars

#sharethelove

You know that old saying "it takes a village to raise a child?" I never fully understood the meaning behind it until I joined the Rockin' Mom groups through the Down Syndrome Diagnosis Network. There is such comfort in knowing I can navigate through this sometimes uncertain journey, and that I will always have these moms to lean on. We will always have each other, through thick and thin. Our kids are growing up together and they too will have each other. It's a connection unlike anything I've ever experienced.

We have decided to raise funds to help our amazing DSDN families grow and thrive. The DSDN shepherds kids from 0 to age 3, and provides support to the families of these children through the #sharethelove Rockin' Family Fund. We are one big rockin' family.

Who are these rockin' families? Please watch and find out in the beautiful video below:

#SHARETHELOVE Video

With only one week left in our fundraiser we are hopeful that we can reach our goal of $10,000! Please help us get there by clicking this link and donating, every single dollar helps. If you want to read a really thoughtful post about it, my co-advisory board member and co-video planner Jisun explains it much more eloquently than I can here. 

We thought it was important for you to know our kids and to have a glimpse into our lives. Jisun and I reached out to our Rockin' Moms for photos, and we received hundreds of gorgeous submissions. My brother Joey generously donated his video creating services. After many long nights, multiple messages, lots of editing and rearranging, he had to gently tell us that if he used every photo we received that the video would run for 30 minutes! It was painstaking to narrow it down into a 5 minute video. Below are some examples of the stunning images we received.

Please help us fulfill our mission and give our Rockin’ Families the support, love, courage, and community they need. Are you wondering where the funds go? Your donations will enable us to help our families in the following ways:

1. Welcome
When a pregnant or new mother first hears the words "your baby has Down syndrome", it can be a time full of uncertainty for what the future holds. DSDN is there to welcome these new parents into our Rockin' Mom support groups. We estimate that our Rockin' groups will grow by 500-600 moms this year alone! Having others who understand what you are going through is invaluable.

The Rockin' Family Fund will enable us to send a small gift to each new mom and child that join our network, ensuring that every family is able to see the celebration in this new life.

2. Support

Sometimes our Rockin' kids are sick. We have some children who require heart surgery, long hospital stays and encounter other medical concerns. It is such an amazing feeling to be able to brighten a family's day with hope when facing medical uncertainty.

The Rockin' Family Fund will help us send care packages to families facing medical issues and extended hospital stays.

3. Comfort 

Sadly, we have lost a few of our babies in our DSDN Rockin' Family. It is heartbreaking to see the announcement when a child passes away. It is important for us to support these families through the hardest time of their life. Late last year we began sending memorial wind chimes to families grieving the loss of a child. Every time one is sent out, our hearts break knowing what that family is facing. The Rockin' Family rallies around these parents and we come together to mourn the loss. We have also created a loss support group so these families will have each other to lean on in the days ahead.

The Rockin' Family Fund will help us continue to send a personalized memorial wind chime to families that experience a loss.

4. Empower

Many times upon learning of a Down syndrome diagnosis, families will have a thirst to gather as much information as possible. There are many local and national opportunities for education through conferences, retreats and classes. But sometimes there are financial limitations keeping families from attending.

The Rockin' Family Fund will enable us to empower families to seek out information and resources to best support their family.

Can you help us #sharethelove? Please donate today and offer the gift of hope to these families.

Fate Smiled

Oooh, I believe, fate smiled
And destiny laughed as you came to my cradle
Know this child will be able
Laughed as my body she lifted
Know this child will be gifted
With love, with patience, and with faith
She'll make her way...

I will never forget the day Natalie Merchant's song "Wonder" played in my kitchen. It had only been a week or so since Ellie was born when I really heard this song for the first time, with new ears. I almost fell to my knees listening to the lyrics and I truly believed that I was meant to hear that song, at that very moment. 

Today as I was brushing Ellie's hair into two little pig tails I couldn't help but think back to a little over 6 years ago. I was pregnant with Luke and it was when Jesse and I both had the dreams. The dreams about the little girl who was ours, with almond eyes and an extra chromosome. I will never forget those two pig tails and sweet smile. I can't believe that because of these dreams we made the decision to be done having children- as if to not "risk it". I had no idea of the little soul that was waiting up there for us. Waiting for that right moment to come down and be ours, to rock our world.

I am a true believer in serendipity, fate, and destiny. How could I not be? It was not a coincidence that Jesse and I both had dreams about Ellie. I look at the past two years, and the journey our life has taken. I think about the people I am meeting along the way, it doesn't feel like just any other ordinary connection. I look at my existing relationships and how they are deepening to a whole new level. There's something more to it, something extraordinary that is hard to put into words.

Today as I looked at my daughter; a sassy, opinionated, smart, beautiful 2 year old little girl, I realize she is exactly who she is meant to be. She completes our party of five and I wouldn't have it any other way. I wouldn't change her for the entire world. And I'm confident that she'll make her way.

That face!

Snuggles from her big brother Luke

But I want it now!

I had to include some drama queen photos!

Brotherly lovin'

My girl

Wonder - Natalie Merchant

3/21/15 World Down Syndrome Day

Guess what day it is!!?

It's 3-21, otherwise known as World Down Syndrome Day!

I have so much to talk about that I don't even know where to start!! Can you hear the excitement in voice?? I mean in my typing!?!?

First off, the Down Syndrome Diagnosis Network has been fortunate to team up with the amazing and talented blogger Meriah Nichols in A Day in the Life of Down Syndrome. We submitted our day here: A Day in the Life of Our 2 Year Old Bookworm. I posted a video of Ellie reading at 26 months old at the end of the post. She is just amazing us! We also posted photos to Instagram and Facebook with the hashtag #lifewithDs. I'm still new to this hashtagging business but I think I figured it out. Here are a couple of my faves:

My big bro Joey helped design a shirt that we sold to raise funds for DSDN and we ended up selling more than our goal. Check out the awesome design (and the cute kids wearing them!) I'm kicking myself now, I wish I would have bought Jess and I shirts too! My father-in-law has one he will be sporting, the kid's daycare lady Lynn bought one (we love you Wynn!!!) and my friend Megan from high school even bought one. Heart. Is. Full!!!!

The Mighty made a shout out to their contributors to submit a short video answering the question "what is one thing you wish people knew about down syndrome?" and my boys answered. Check out the beautiful video below:

The Mighty - WDSD Video

Yesterday the boys wore their sweet new shirts to school (yes they are wearing them 2 days in a row, and no I didn't have time to wash them) :) Mrs. Miller, Luke's Kindergarten teacher even played the Mighty video for the whole class, twice! Luke was so excited to share it with his friends, his smile was a mile wide when he got off the bus yesterday!

The Mighty also wrote a story about how those with Ds experience a range of emotion... this isn't a surprising concept, right? Check it out and see Ellie and Lloyd (our kitty) in the article. I cannot tell you the number of times I've heard that people with Down syndrome are always happy. As a matter of fact, one day Ellie and I were in our favorite store (Target) and a gal probably in her 80's walked by and said "oh, look at her, she's so happy!" and Ellie's facial expression at that moment was like this: LOL!

Oh, and get this!! Ellie is going to help Change the Face of Beauty! I'm sure you've heard about this wonderful campaign started by Katie Driscoll. Back in December the special needs community was encouraged to call out companies to use people of all abilities in their advertising. Well I had sent Ellie's photo to a local modeling agency and found out last night that they want to use her! The night before WDSD. How neat is that!?!? They are called Puddletown Talent and are located in Portland. I'm so excited and they are too. I will keep you posted on that in the coming months! I'll never forget when Ellie's friend Izzy's picture was in the Target ad and my boys said "mom!!! she's just like sissy", they LOVED seeing her in the ad. I can't wait for the day that seeing people of all abilities in advertising isn't a big deal anymore. 

So the plan for this special day is to mow the lawn and follow that up with an afternoon nap then Red Robin for bottomless fries, and maybe big beers. :)

We also celebrated "Spread the Word to End the Word" on 3/4. I shared the below photo of Ellie and it was shared 418 times, I was blown away. The support from friends and family as well as strangers is humbling. I am so grateful. Thank you my friends for sharing this important message!!

A few more photos of this cute little face:

So for this post I asked Will to pick the song. He loves this song and it's one of our top picks for our dance parties in our kitchen. :) And note we chose the Spongebob version because the actual music video is weird and inappropriate!

P.S I dare you to play the song and see if you can keep yourself from busting a move, I bet you can't! Just try it!

Turn Down For What - DJ Snake Feat Lil Jon