Don't Poke the Mama Bear - My First Letter to the Editor

Last Friday we had Ellie's planning meeting with her whole team; Early Intervention, Physical Therapy, Occupational Therapy and Speech Therapy. We were discussing what will happen when Ellie turns three in January. Thinking of school, learning, bus rides, and making friends makes me sweat and want to stress eat. I went into the meeting feeling nervous and unsure, but by the end of it we had a wonderful plan in place for Ellie and I felt lighter, hopeful even. The positive feedback I received about how she's doing was so reassuring. Her team believes in her and they truly think she will to rock it when it's time to go to school! WHEW!

But this leads me to a letter to the editor that I read the week before Ellie's big meeting. My good friend and fellow Rockin' Mom Jenny shared it with me. Jenny lives in Pennsylvania and this article was published in Grants Pass, Oregon. The post was titled “Special needs kids don't need to be in classroom” and it was written by a woman named Betty. I doubt Betty expected her letter to go viral, but it did. Below you can see the newspaper clipping for yourself, please read it and let it soak in for a minute.

"Ride the small buses?" As you can imagine, I was disturbed by Betty’s letter. Actually disturbed isn’t the right word, I was just plain pissed. Just when I feel like we are getting somewhere with inclusion and acceptance, something like this has to come along and punch me in the gut. I decided to contact the editor of the Grants Pass paper with my rebuttal. My fingers were typing faster than my brain could even work and I quickly sent off an email to him. Soon after I received a reply stating that their letters have a 250 word limit, and my letter was 483 words. Oops. The editor said he would like to share my opinion but I would need to refine my letter, which I did.

I also explained to him that I thought Betty’s letter should not have been published in the first place. I think it's discriminatory. He confirmed that he agreed that it showed this woman’s ignorance but that her opinion was still just that, her opinion. I strongly believe that had Betty singled out any other race or group of people that the letter would not have been published. I checked in on the paper's Facebook page and found that the visitor posts have been blocked. There were many insightful and some angry posts from across the world, all aimed at Betty. I think it became too much for them to manage. I'm curious to see if the paper has any follow-up on this, such as an apology.

Below is my letter to Betty. I sure hope she had a chance to read it and that she reads the other letters that have come in. I also have to give a shout out to my friends Andrea and Lisa who found me a copy of the paper- this particular newspaper is only readable online if you have a subscription. So thank you my friends for getting it for me!

I realize this is just the beginning of the adventures and hurdles I'll face while raising Ellie. Seeing the responses from fellow Rockin' Moms and other parents of kids with special needs makes me realize how lucky we are. We are so blessed to have our kids in this generation, and not in the generations before it. I have a sneaking suspicion Betty grew up in a time when those who were different were either institutionalized or hidden away. I truly hope she has a change of heart. 

For this post's song, I chose an absolutely beautiful one by the band Gungor. If you have a child with special needs I urge you to listen to it. Michael and Lisa Gungor have a gorgeous little girl with DS named Lucette, which means "light". When I first watched the video it brought tears to my eyes and a flood of memories back to the day of Ellie's birth. The emotion in Michael and Lisa's faces is so familiar to me. I can see the fierce protective love, mixed with a fear of the unknown. After reading their blog I found out they also had a birth diagnosis. Their birth story is worth the read, and it'll surely make you cry. Ahh, it's just amazing.

And Betty, I doubt you will ever read this but I think you should listen to this song too. All children are amazing gifts who deserve only the best in life. 


And the blind gained sight
As we met our light
Oh the joy and fight
The gift of life

Your hands, the creases
Your feet, your breathing
You're mine, you're perfect light

Light - Gungor

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

#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