This Is How We Do It - Down Syndrome Awareness Month

I am not sure why, but every aspect of my life is ruled by song. Today, like many many other days, I was singing Montell Jordan's "This is How We Do It". Because I can't say those words without singing them just like Montell. I wanted to share how we do Down Syndrome Awareness Month, which if you are my friend you are fully aware what Down syndrome is! So I like to call it Down Syndrome "Celebration" Month. Because I'm annoying like that, and we have a lot to celebrate.

Every year as October approaches I try to come up with fun ways to celebrate. In the past I have inundated friends and family on Facebook with various facts about Ds and too many Ellie pics. I've visited the boy's school and read books. Our favorite one to give to the class is 47 Strings. Some other great choices are The Courage to Be Kind and We'll Paint the Octopus Red. We always wear our cute advocacy shirts. There are a ton of wonderful businesses who make Down syndrome awareness shirts, I'll list a few here (please note I am not getting free stuff for saying this!) 
Reeve's Tees (Homies Shirts!)
Gabe the Babe & Co (Advocate, Educate, Celebrate Shirts, 47>46)
Littlest Warrior (Be Kind ASL Shirt, The Lucky Few)

This year I decided it would be fun to do a school visit for all three kids now that Ellie is a Husky like her big bros! And I wanted to show a video in each class instead of reading a book.

First stop was supposed to be Ellie's preschool class, but she was sick! So instead I sent in a copy of 47 Strings as well as the adorable cartoon called Everyone Counts: My Friend Isabelle which I thought helped explain Down syndrome in an easy way for 3 and 4 year olds. It's so cute! I had planned on giving out multi-colored goldfish, reiterating how the fish are all shaped the same but are all beautiful different colors. Just like us, although we are all different, we are still all the same. Those are still sitting in my kitchen, I plan on making a class visit in November.

My friend Cathleen who blogs over at Foursmalls used the concept from the One Page Profile and made an awesome info sheet about her cutie Sam for school! I loved it so much so I decided to make one for Ellie too. Her teacher will send a copy home with each child so their parents can also talk to them about Ellie. Here it is, and below I'll share the template for anyone who would like to use it! If it seems odd that I'm sharing the template, it's because the One Pager received a lot of attention and I have spent the past few months walking people through making their own. I finally figured out an easy way to share the template, as you can see below. I have also updated the One Pager post with the same, if you need a template for that for your IEP, IFSP, Transition Meetings, etc.

Here's the link to the template (save yourself a copy in order to edit, instructions below!)

DS Awareness Month Poster Template

And instructions to save your own copy:

Our first stop was Luke's 3rd Grade class with Ellie in tow. A friend of mine said "so in other words you brought her in like show and tell?" And yes, I did, and it was very impactful for the kids to meet her in person, play with her, read with her, and get to know her. I have one word for this experience... tears. I decided to let my boys choose what we would show to the class, and Luke chose the video "True Colors" by Matty B. His class had already read 47 Strings, so I started off by telling them how Matty B has a sis with Down syndrome just like Luke. Many of the kids knew of Matty B, and were excited to watch the video. Once the video stopped and I turned on the lights, over half of the class was in tears. They were so touched by the message. They ended the visit by singing "If your happy and you know it" and Ellie lead the class. I teared up too many times to count.

In Will's 5th grade class, he asked that we show the video "Just Like You". This one is a longer video but was great for this age group. I started off this presentation by explaining who I was, that it was DS Awareness Month and I introduced Ellie as Will's little sis. I let them watch the video first, and told them they could ask me anything about Down syndrome and that there were no bad questions. These kids could have asked me questions all day, and they had some great thought-provoking questions. For example, one boy asked if Ellie had a baby, if the baby would have Down syndrome. I told them it's a 50/50 chance. Another boy raised his hand and said "so if her baby has Down syndrome and it has a baby, what are it's chances of having Down syndrome?" I probably looked like a deer in the headlights, and Will's teacher joked "that would make you a great grandma!". The kids loved asking "what is a chromosome?", "what is the r-word?", "is Down syndrome contagious?". 

Last year the boys gave their friends something that reminded them of their sis, so Will chose "Extra" gum to represent the extra chromosome and Luke chose "Sweettarts" to represent Ellie. That one makes me giggle because I always say Ellie is like a Sour Patch Kid, first she's sour then she's sweet. Boy is that the truth! So this year I asked again, and they said "something sweet!!!", so we picked Hostess cupcakes and twinkies. Costco has a box of 32 for $6.99 and they are Halloween themed so the kids were totally excited! Sorry teachers.

What I have come to realize in the almost 5 years I've been Ellie's mom, is that Down syndrome is something that you don't understand until you do. Sounds silly, right? But when I first started talking to the kid's classes when Ellie was just a tiny baby, they had no idea what it meant to have Down syndrome. I'm watching first-hand as the kids are growing up, how they now "get it". I walked through that school that day and kids from other classes were yelling "hi Ellie!!" and wanting to talk to her and high five her. Down syndrome isn't scary and these kids love her for who she is. As she enters this school in the future, the kids will all know her already. They will understand why low tone makes it harder for her to hold her pencil, or talk clearly to her friends. But they will also understand that Down syndrome is a part of her and that she is awesome just the way she is.

As I was writing this post Jesse walked by and read the title and sang it just like Montell. So you guessed it, I have to add the song to this post for your listening pleasure, and sorry if it's in your head now! 

This Is How We Do It - Montell Jordan

As Long As It's Healthy, A 77 Year Old Pregnancy

As I rummaged through the area under the sink, my mom stood next to me nervously fidgeting with her hands. I handed her the Dixie cup and a few moments later we saw two little lines. Pregnant! I cried tears of joy and amazement “I cannot believe I get to experience this with you, mom!” She gently rubbed her belly and said “I think it’s a boy, I can tell by how I feel.” We were giddy and excited like we were sisters. I was then outside and in the distance was a sparkling water tower with bright orange pumpkins at the top. I made a mental note to take photos of the kids there sometime. It was the golden hour and the sun was shining beautifully and the light was perfect. I pulled my mom close to me and we googled “77 year old pregnancy risks”.  The next thing I remember is being startled awake by the sound of my alarm clock. I smiled to myself and thought “oh man I can’t wait to tell my mom about this one”.

That morning I did what I do every day, I called my mom. “Mom, I just had a dream you were pregnant!” She giggled and said “I better go to the casino, maybe it means I’ll meet a guy!” She always makes me laugh. So then we had a whole conversation about stories of women past age 60 having babies, I reminded her to be careful. “I wonder what a 77 year old’s risk of having a Down syndrome pregnancy would be?” we giggled some more. As I explained the random pumpkins and the water tower, she said “OK you know what is weird, I’ve had a reoccurring dream and fear since I was a little girl of water towers.” Her brothers would simply walk by her and say “water tower” and she would cry. Dreams sure are trippy, aren’t they? I wonder what it all means.

Me and my mama

I can tell you exactly why I’ve been dreaming about babies and pregnancy though, it seems that everyone at work is pregnant. The two girls that sit next to me are pregnant and have the cutest little baby bumps. We talk about babies every day. I was talking to one of the girls right before her gender ultrasound. I said “so do you think you’ll have a little sis for your daughter or a baby bro?” She looked at me and said “I don’t care, as long as it’s healthy”. Then I could see her body language shift. She said “but, I mean, if it’s not healthy that is OK too...” I could tell she had one of those “oh crap” moments, like maybe she said the wrong thing to me.

This conversation brought me back to when I was pregnant with Ellie. Every night Jesse and I have a routine of going upstairs and kissing the kids goodnight before we go to sleep. Every single night during my pregnancy with her, I would go kiss my boys and then rub my belly and say a prayer “please Lord bless this baby, and please make sure she is healthy”. I had a rough time throughout my pregnancy and always worried that she wasn’t going to make it. I had bleeding for weeks, gestational diabetes, thyroid problems, and she was in an odd position in the womb to which doctors had no explanation.

My Ellie Belly

After the birth of our girl, I remember crying to my mom. Through tears I said “but mom I prayed every night that she would be healthy.” She looked me straight in the face and said “and she is, honey.”

Ellie with Grandma

I know once you join the Down syndrome club, and you hear other moms saying how all they care about is that their little one is healthy, it can hurt a little. Like they don’t want a baby like yours. But I’ve come to realize that there is nothing wrong with hoping your baby is healthy. One thing we all have in common is that we don’t want our little ones to hurt or suffer. We are protective and love these little beings more than life itself. So “as long as it’s healthy” doesn’t bother me anymore. Because I prayed that our girl was healthy too, and she is, honey. 

Ellie and I

This week's song was one that popped up yesterday on Pandora, and I immediately sent it to my brothers. Yesterday would have been my handsome dad's 80th birthday, so of course I always think he's saying hello by sending me beautiful music to listen to. :)

Timshel - Mumford and Sons

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

What is Your Super Power? My First DS Convention

My mom, my BFF Jos and I had the wonderful opportunity to attend my first ever Down Syndrome convention, thanks to our amazing local group, the Down Syndrome Network of Oregon!!!! The National Down Syndrome Congress was holding it's 43'rd annual meeting and I have only three words to describe what it was like...

IT. WAS. AWESOME!! And the best part? The people. Let me explain.

My first goal of the weekend was get a hug and a selfie with the famous Tim Harris, owner of Tim's Place. If you haven't watched this video yet, you really should. Tim is a rock star, owns his own restaurant, started his own foundation and could literally quit his day job to be a motivational speaker. I remember shortly after Ellie was born my whole family huddled around my phone and we watched his video with tears in our eyes. Tim is a true inspiration. He was a keynote speaker Friday night (making everyone cry tears of joy, of course) and we learned so much from him. These are Tim's Tips for an Awesome Life, take note, they are really great:

1. Love people
2. Work hard
3. Believe in yourself
4. Believe in others
5. Be happy and show it
6. Use your super power

So that first evening, as we headed back to our hotel with our hearts full, we met him! My goal was accomplished- I was giddy can you tell?

I also had the absolute pleasure of meeting some of my Rockin' Moms in REAL LIFE. These gals have been there since our girl was born and I owe so much to them. We have been through thick and thin together, and I am so looking forward to meeting more of our Rockin' Moms in September at our first retreat. Here's a group picture from the dance on Saturday night, along with some of my dead relatives (orbs) haha, roll your eyes it's OK.



During the convention I sat in many sessions that were informative and eye opening. I learned about apps that are helpful as well as Speech therapy tips from Libby Kumin, who is wonderful. I already own her book and seeing her in action was awesome. She genuinely loves the kids she works with and she had some great tips for working in speech therapy tricks during everyday life.

Lastly, I have share with you about my new friend Casey. As we were waiting in between sessions, us girls decided we should sneak in a cocktail. As we sat at the bar a handsome guy with Down syndrome sat down and ordered a Bud Light. Jos immediately sparked up a conversation with him. We learned that he has a girlfriend who he is planning on proposing to, he is a proud uncle of his nieces and he was going to have a new nephew any day. Jos asked him to describe what a typical night would be like after he's married. He said he would come in and ask his wife to get him a beer. We all giggled but then he started talking about dinnertime. He said he would turn the music on while they made dinner, and twirl his wife in the kitchen, just like his dad did to his mom. Jos and I lost it and had huge tears in our eyes. So then we asked him for a picture and were laughing at how his debit card, Bud Light and his shirt all matched!

I ended up finding Casey's mom on Facebook and had to share the story of how he was the highlight of our whole trip. She is an awesome lady! And now I'm friends with Casey on Facebook too! Casey's mom has a company called Wordy Worm Reading. With our girl being such a book lover I am looking forward to learning more about this program! It's amazing to me how life connects us to others, I truly believe all of us were meant to skip our 3:30 session that day! 

Being in a place with hundreds of people with Down syndrome was unlike anything I have ever experienced. It was inspiring, exciting, and gave me hope.I am so grateful to the DSNO for the scholarship to attend this year. I look forward to sharing everything I learned at a mom's cocktail hour at my house! :)  I look forward to being able to attend another convention someday, Florida in 2016? We will see!

No other song could sum up last weekend like this one can, so here it is:

Happy - Pharrell Williams

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