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

How Can You Change the Face of Beauty??

Is your child a ham? Do they light up when they see a camera? Have you wondered what this whole Changing the Face of Beauty business is all about??

Well I am being totally serious when I say, send your child's photo in to your local agencies!!!! Do it! If Ellie can do it, your child can too!

Since Ellie has been booking modeling jobs I have received a lot of messages from other parents who want to know how to get started. I thought I would list the steps I took here for easy reference.

The first step I took was to google... I googled "child modeling agency" in the largest town near us. I had found two agencies that sounded good. I picked two photos of Ellie that I felt showed her "sparkle", one head shot and one full body shot. At that time Ellie wasn't walking so it ended up being a sitting photo, but it worked out just fine.

Here are the pictures I submitted:

When you submit your photos, there will most likely be an area in the form for comments. This is where I included the link to Changing the Face of Beauty, and I explained to the agencies why I am so passionate about CTFOB's mission. I also told them all about Ellie. 

Then I waited. I had submitted Ellie's photos in December and didn't hear back until March. One agency never called me back. But Puddletown did, and they have been absolutely wonderful to work with. You can see Ellie's talent profile here. We have had a lot of fun with the shoots Ellie has done for Hooray Haroo, Matilda Jane, and Fred Meyer.  She has a Fred Meyer ad that is supposed to run this week, so keep an eye out for it!

The posing. I wasn't going to add this tibit of information but I think it might be helpful. Since Ellie was tiny we have always had fun with her signature "model poses". Here she is as just a little nugget posing for me:

Just a few weeks ago my friend Joelle from Australia messaged me. Her beautiful daughter Josee Hope was asked to be a model for a company called Oobi. And not only a model, but the Unicorn Ambassador for their company - PERFECT!!! Joelle was nervous that Josee wouldn't pose for the camera. Here are some of the tips I shared with her:

The mirror: The mirror has helped us with Ellie's speech, teeth brushing, hair brushing, etc. We also would copy each other's faces in the mirror, so now she will copy any face that I do. It's a great place to start.

The iPad or phone: Letting your child videotape themselves making faces gives them instant gratification. This is another useful speech tool as a matter of fact!

Siblings/Mimicking. This one is HUGE. Mimicking and copying siblings has been a huge help in getting Ellie to do her poses. Even during her Matilda Jane shoot Ellie started to melt down, but then she watched Grandma Barb and copied her, you wonder where her sassy poses came from? 

So Joelle tried these tips with Josee who had never modeled professionally before. She absolutely ROCKED IT. You have to check her out, isn't she amazing??? Oobi Unicorn Ambassador Josee Hope

I was worried about whether modeling would be too time consuming for our crazy life. Honestly I wasn't sure if doing this would even be feasible since I work, but my mother-in-law has been a huge help, thank you Grammee!! She has taken Ellie to both of her Fred Meyer shoots, and the Matilda Jane shoots have been on the weekend, so I was able to take her! We are taking the jobs as they come and are figuring it out as we go. We don't know how long the modeling gigs will keep coming in so we have just decided to have fun in the process. We are also saving Ellie's money for her college fund!

As always, I am here to answer any questions you may have. Seeing children and adults of all abilities in the media is so, so important. It makes my heart swell with pride and excitement when I see more and more companies being involved. My hope is that someday it isn't a big deal and that it just "is", if that makes sense. 

Here are some of her latest photos that I love:

Her first Fred Meyer ad:

Behind the scenes at Matilda Jane:

The real deal, I think they turned out so great:

A few I took this morning:

For this post's song I'm going back to my high school roots (thanks to my niece Karley for rekindling my love for this music). Here is one of my faves from 20 years ago, and now it reminds me of my baby girl:

Beautiful, you're beautiful, as beautiful as the sun
Wonderful, you're wonderful, as wonderful as they come

Beautiful - The Smashing Pumpkins

Three. Tres. Ba. Trois. My Baby!

Three! What a magical but not too strange trip it has been! I can't believe our little girl is three today. It's been a while so I thought it was the perfect time for a blog update. 

I haven't been good about blogging lately and I'll try to explain why. When I started this blogging journey I saw it as a virtual baby book; a great way to keep Ellie's milestones in one place, to have a place to look back at how she's growing through pictures, and to keep friends and family updated. But in all honesty the online blogging world is tough. Her info is out there for the world to see. There's a lot of talk about sharing our children's stories, because her story is HER story, it's not my story. Is it fair to Ellie? Will she look back and want to slap me? 

So in other words, I started second guessing what I was sharing. I don't ever want to do Ellie a disservice by sharing our family's experiences. But I also still feel that sharing is important for those newly on this journey, our life is pretty normal (normal? like a setting on a washing machine?) No seriously, our life is great and we have a kid with Down syndrome.  So with that out of the way, I wanted to do a little recap of the past year now that my baby girl is three. 

2015 was SO FUN and SO BUSY. And Ellie's birthday is TODAY! 

Ellie had an epic year. I can't imagine that 2016 could top it. She was in the paper a few times, and even on the news! She was also in Times Square on the big screen, TWICE! She's reading like a champ!! She is even starting preschool in a month! I'll recap her 2015 in pictures, because that is how I roll (and I love going back and looking at them as the years quickly pass by) :)

My last post was my pissed off letter to the editor, and the one before that was the amazing Down Syndrome convention. So I'll rewind to summer. Let's start there.

Our 4th of July party was the best one ever, there were lots of people and fun was had by all.  I also got to meet my friend Jisun for the first time. We met online in the original  Rockin' Moms group. She stayed the night at our house with her family in a tent! Yes it was that kind of party! She has a blog called kimchilatkes. She is a very gifted writer, if you haven't already you really should check her out. She's also now an Oregonian, woo hooo! Ellie and Caj are so cute together. I'll talk about them more later. 

Every year our family gets together and we stay at Sun River. It is SO FUN, so relaxing, and just wonderful. Jesse's sis and family live in Vietnam so we always love to have them home. The cousins act like no time has passed. We look forward to this getaway every single year. 

Our besties from Texas came and stayed with us too, it was such a fun few weeks!! I didn't know that I wanted a Sister Wife until Kelly came and stayed with me. She would have dinner ready when I got home from work, and laundry done as well. Our house never looked so good. Kel, when are you coming back again?? Ah we love you guys so much, and miss you terribly!

We tried to get as much time on the boat as possible. Ellie LOVES it. We are looking at getting her and Luke into swim lessons before summer so they are more confident in the water. This is my favorite part of summer.

We also go on an annual beach trip with my side of the family. My brother and sis-in-law came from Texas and my niece Presley stayed for 2 weeks. It was so wonderful having them home!! The boys get along so good with their cousin Pres. The family genetics are almost creepy sometimes! They are all so much alike, and my niece is my mini-me!

We also spent a lot of time with my BFF Jos and her family. We are so lucky to have them in our lives. 

September came, and so did our annual DSNO Buddy Walk! Ellie's team raised almost 2K- we are beyond grateful. We also had our biggest group yet!

Another event in September is the National Down Syndrome Society Buddy Walk. They have a jumbo-tron in Times Square that plays a video showcasing people with Down syndrome. I've entered Ellie's picture every year since she was born. She's never made it in until this year. To me this was the "big one"... New York, baby, where my daddy was born. Oh he would've loved to have seen her in Times Square! And you know what? Somehow Ellie made it in twice this year. The paper even did a little story about it. She was in once with her buddy Caj (mentioned above) and again with her Great Grandma Margaret. Our sweet Grandma passed away in October. She got to see the photo of her and her Great Granddaughter on the big screen. She and Ellie had a special bond that's for sure. We sure miss her.

Another fun event in September was my "Rockin' Mom" get together. My house was full of beautiful babies and big kids too. Watching the friendships develop before my eyes was too much. There's something to this little Ds family I belong to, it's hard to put into words. But what I do know is that I'm grateful for each and every one of my Rockin' Moms, near and far.

October! October is my handsome hubby's b-day, as well as Down Syndrome Awareness Month! I warned my Facebook friends that I would be annoying for the whole month of October. But what I found was that my friends are amazing. They actually shared my photos of Ellie and are spreading awareness (acceptance) too. Here are a couple of photos I shared in the month of October:

So let's talk about Ellie's modeling for a minute. This whole thing was CRAZY to Jess and I. I'll try to explain it all as quickly as possible. Ellie was signed to Puddletown Talent in March of 2015. She had her first modeling gig in August for Hooray Haroo (seriously adorable clothing, made in Portland, OR!).. the Statesman Journal did an article about her modeling job. They had told me the article would be in the Sunday paper. I had my sweet mama-in-law and brother John running around to find the paper for me, to see if she was in it! She wasn't and I figured maybe they decided not to run the story. As Jesse said "it was only one ad she was in- what's the big deal?!"

The next morning I woke up early and was waiting for my coffee to brew. I jumped on Facebook to check in on my friends. My friend Lisa (in TEXAS) yes we love our Texas peeps... messaged me saying that she saw Ellie on her news-feed in USA Today. Wait, WHAT!?!?! I'm pretty sure I ran in and woke Jesse up to tell him. 

I went in to work like any other day, and around 9am my mama-in-law sent me a picture, our girl on the cover of the Statesman Journal. Then around 10am Ellie's agent (that feels so funny to say) texted me and said that Channel 8 wants to interview us. WHAT?!?!? So I called Jess and he said "Cool, you should do it." So I talked to my boss, took PTO, and rushed home. I had no time to clean my house. My amazing mama-in-law came over to help me hide clutter and fake like my house was clean. It went really good and Ellie was a total ham for the camera. So then The Mighty posted an article about Ellie. Then I got a call from a sweet reporter from Upworthy. She loved Ellie's story and wanted to do an article. She said "we only have 8 million followers on Facebook" Oh my gosh! I couldn't believe all of this was happening.

             

  

            

So since that one crazy modeling job went viral, Ellie has had two more modeling jobs. One for Fred Meyer (thank you to her stage Grammee for taking her!) and one for Matilda Jane. The Fred Meyer ad is supposed to be out in February and I'm not sure when the Matilda Jane photos will be live. It's been a whirlwind and so much fun. The best part for me is talking to other parents about Changing the Face of Beauty. It's an amazing and important campaign and is really changing the way people view those who are differently-abled. I'm so grateful. So here's my advice to parents: if your child loves the camera and is comfortable having their photo taken, get that kid an agent! Contact your local agencies with your child's photos and explain CTFOB's mission. It's really an amazing thing.

The Statesman Journal also did a follow-up on Ellie that you can read about here. It sums up all the craziness in a nice neat package, much more eloquently than I could!

An update on our girl as of today. Ellie is reading like crazy, she loves her flashcards and her books. Jesse and I did a count the other night and she has 130 sight words. It's so amazing! She is just starting to take more and more steps and we are really proud of her. She has a new Minnie Mouse backpack to start school in February! Health-wise she is doing awesome with the occasional sniffle and she seems to be growing out of her croup-there-it-is problems! She is on meds for hypothyroid and I also give her a handful of supplements (Nutrivene, zinc, folinic acid, and fish oil) which are all approved through her Pediatrician and Naturopath. We are lucky that we have Dr. Peirson local to us, she has helped Ellie SO much! She has her 3 year check-up this month at her Ped and the DS Clinic at OHSU. 

Lastly are some more recent photos from Thanksgiving and Christmas. Mostly Ellie doing her signature hard hugs that everyone looks forward to! Overall 2015 was amazing and fun and I don't know where the years have gone. Our baby is a big girl now and it happened in the blink of an eye! We love you Ellie Lehne, Happy birthday sweet pea!

For this post's song we are sharing Ellie's current favorite jam (besides Let it Go, of course)...

WTF - Missy Elliott