#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

The Smartest 2 Year Old Ever

It was the evening before Ellie's 2nd birthday and I was doing that "thing". The whole self-pity thing that I tell other mom's not to do. Our kids are awesome, they are on their own timeline! We can't worry about milestones! You see, Miss Ellie isn't walking yet. Just taking her to the grocery store I am asked "how old is she? is she walking yet?" Almost every single time. So I was dwelling... There's something about a big milestone like a birthday that brings all of those emotions to the forefront for me. It makes me crazy that I do the very thing I encourage others not to do.

On this day I was just wallowing in it. These emotions always sneak up on me it seems. But then our neighbor girl came over. She is 11, and she had her friend with her. She was excited to show her friend all of Ellie's cool tricks. "Watch, she can whistle!" her friend was shocked. Then she asked if she could get Ellie's favorite book, and I said "of course!" Ellie then read 6 words out of her book, she can sight read the words "eyes" and "toes" and she makes correct animal sounds when she sees the word "cat", "elephant" and "tiger", and she waves for the word "wave". Our neighbor's friend said "how does she do that!? She is the smartest 2 year old ever!!" I felt my heart swell, then I felt guilty. Ellie is not reaching milestones on time, she is even behind some of her peers with Down syndrome. But you know what? She is rocking it in her own way. We are so so proud of our girl. She continues to amaze us daily.

Ellie had her 2 year doc appt, and the same week had her 2 year check-up with the Down Syndrome Clinic at OHSU and all of the awesome staff there. We are so lucky to have such a great medical team that cares about Ellie! I highly recommend the Ds Clinic, it's a long appointment but SO worth it. She met with an audiologist, speech therapist, occupational therapist, physical therapist, and Dr. Pinter. After the appointment they send a packet of information with all of their notes and suggestions. It's so nice to have it as a baseline for Ellie and I plan on taking her there every year.

We reviewed everything we have been working on since her 18 month appt, including the introduction to her thyroid meds. I have to mention that Ellie's Ped and the Ds Clinic are not advocates for treating her thyroid based on her #'s, as they feel they are within normal range. One other point that was brought up was that if I truly felt treating thyroid was important, then I should consider a synthetic thyroid medicine. There's a fine balance in following my mama-gut and also making sure I'm doing the right things for Ellie that is safe. So with that said, they both acknowledge she is doing great and that what I am doing currently won't harm her health. So I am getting more blood work next week to make sure everything looks good and will go from there. 

Ellie has been on her thyroid meds for 4 months now. Jess and I have seen a HUGE difference in her. She had 3 teeth come in within the first week of being on the medication! I couldn't believe it. She also seemed stronger and more solid, and she is on her way to walking. I had said I would do an update on her symptoms, so here is a comparison of her initial symptoms (the reason I explored thyroid treatment) and I compared them to how she's doing now:

• She stopped growing 
• UPDATE: At her 2 year appt she has grown to 33.5" and 24 pounds since her 18 month check-up. She's in the 50% for height and a tiny nugget at 16% for weight. The docs are happy with her growth and height to weight ratio. Still a string bean but growing steadily. 





You can see the mottling on her skin here. Doesn't she look big though?

• Mottled skin 
• UPDATE: She still has slight mottling (all of my kids had this) but it's much much better. 
• Cold hands and feet 
• UPDATE: Her little hands and feet are warm now! 
• Constipation 
• UPDATE: This one is a big one for us, we have dealt with constipation since Ellie was born pretty much. She's now mostly regular. It's so nice to not worry about that anymore. Oh I bet she will love to read this when she's older...
• Tongue protrusion 
• UPDATE: Ellie still has tongue protrusion but she is better about keeping her tongue in. She also understands the concept of "tongue in" and "tongue out" so that's what we focus on now. Her OT actually noted the improvement from her first visit versus after the thyroid treatment.
• Swollen belly 
• UPDATE: Now that her poops are in check, her Buddha belly is much better. She still has a bit of a belly on her (just like her mama) :) 
• Yellowish skin 
• UPDATE: She no longer has a yellow nose, but her hands and feet have a slight yellow tinge. Upon reviewing her diet we found out that most of the foods she eats are yellow/orange. Her doc says this is most likely the culprit so I'm working on that one!
• Tiny feet! 
• UPDATE: I sure wish I measured her feet before and after the meds, but I do know that she fills out her cute shoes finally. I am sure they grew, I just can't tell you how many sizes! 
• Delayed tooth eruption (5 teeth at 20 mos) 
• UPDATE: 3 teeth came in within the first week of the medicine. She has two more molars coming in on the bottom so we are up to 8 teeth and 2 peeking through! 
• Dry skin 
• UPDATE: She gets chapped very easy on her cheeks and chin, but her dry patches on her elbows and knees have cleared up. 
• Puffy eyes 
• UPDATE: I think her eyes look less puffy, when I look back at photos and compare them to now I think this is improved. 
• Low iron levels 
• UPDATE: I'm still working on this one, I need to add iron to her supplement list and have been bad about adding yet another one. This one is my fault! 
• Low muscle tone 
• UPDATE: I definitely see a marked improvement in her tone. She feels so solid to us and strong, it's amazing! She can go from sitting to standing unassisted which is huge for her.
• Reflux (she is a spitter-upper, still!) 
• UPDATE: This is no longer an issue. Her frequent spit up is gone! 
• Delayed fontanel closure (still has a soft spot) 
• Just checked it and it's barely there, even Jess was surprised at how small it is now! 

The past few months we've had a lot of fun, super busy Christmas celebrations with our family, the kids were spoiled rotten by their Grammee, Papa, Grandma, aunts and uncles and cousins. Jess and I had a fun date night new years eve which is rare since we don't like leaving the kids on new years! We even squeezed in a quick trip to see our BFF's in Dallas and so Jess and Scott could watch the Duck game (which made us realize how stinking much we MISS them!!!) we are now counting down until they come visit us this summer!

I also went with my mom and Jos and some other neat gals to watch Famous Iris (and Jos') BIG film debut in the movie "Wild" with Reese Witherspoon. It was SO fun!! Here is a still from her big scene, I hope it's OK I post it here! It was so funny watching Jos sink in her theater seat as we all screamed LOUD during her scene!! Sorry Jos, but it was awesome and exciting to see your faces on the big screen! Wooo hooooo!

Here are a few more of our favorite pics from the past couple of months. I am focusing on Ellie pics since it's her 2 year birthday update. I seriously took too many (no surprise there) and need to sort them out and organize them!

Looking so pretty in her Christmas dress (courtesy of Grammee!)

Our handsome dudes.

Loving her new cabbage patch from Grammee and Papa

Happy 2nd bday baby girl!

A comparison from last year's 1st bday pic! Look at how big she is!

My ballerina in her dress from Uncle Matt and Auntie DiDi

My little doll

One of my all time faves of our girl

Our neighbor Kate LOVES Ellie, and Ellie loves her too

For this week's song I chose one from the movie Wild. Do you ever hear a song and it immediately takes you back? This one was almost haunting for me, as I had not heard it since my dad was alive. He used to sing and whistle it all of the time- but I didn't realize it until I was sitting in that theater hearing it again after all these years. After the movie I immediately found it online and listened to it, and sent it to all my brothers. They remembered it like I did. It's funny how a song can do that to you and can stir up so many emotions. This was a good reminder of how music has been such an important part of my life and has shaped many of my memories. 

El Condor Pasa - Simon and Garfunkel

This is the face she and her daddy do to each other, I love it!

The Best Advice I've Received

It's been two years already since we welcomed Ellie into our lives, with her little extra somethin' somethin'. And in these two years I have received some amazing advice; "be kind to yourself", "don't project into the future, enjoy each day", "milestones, schmilestones", "don't compare", "don't limit her", "admit when you need a break", and "follow your gut". The last one has proven to be an important one. But the one that has really stayed with me was given to me less than a month after Ellie was born. Let me explain how it all happened.

Somehow, the Down Syndrome Network of Oregon heard about Ellie's birth diagnosis and they wanted to give me a Basket of Hope. I had no idea what this meant, and I hesitantly agreed to meet a local mom. We chatted over email and I found out she had a son named Jacob with Down syndrome, he was 13 at the time. They planned on coming over to meet Ellie, and so I could meet Jacob.

Meeting Jacob would be the first time I had actually talked to someone with Down syndrome. I was nervous and I asked my mom come over to meet them with me. Come to find out, in a fateful sort of way, this mother lived a couple doors down in our neighborhood just a few years before! And now they live only a couple of miles away, I love when this stuff happens! She and Jacob and his older sister arrived and were so welcoming and sweet. Jacob was tall and lanky, considerate and well spoken. I'm ashamed to say it now, but upon meeting him I realized I had some serious misconceptions about what the diagnosis meant, and I had a lot to learn. He was so sweet with Ellie. He held her carefully and he brought tears to our eyes when he said quietly "you're like me". 

Jacob's mom was laid back and easy to talk to. I felt like I had known her my whole life. She asked me what we liked to do for fun, and I told her our favorite things were entertaining and going boating. This was when she said "so, you like to throw parties? Keep doing it. You like to go boating? Keep going boating." It was as simple as that. It was a defining moment for me. It's hard for me to explain but I felt lighter, like a weight had lifted off of my shoulders. I kept thinking our lives were forever changed when we found out about Ellie's Down syndrome. She went on to explain how therapy is important, but to not let it rule your life. Real life, Ellie being home with her brothers, going on the boat, spending time with family and friends doing regular things is just as important as therapy. 

Since meeting her that day I think about her words often. I get caught up (a lot) in wondering if I'm doing the right things. The list of therapies available is as long as my arm, and the list of vitamins and supplements she could be taking is huge. She doesn't just get a gummy vitamin like her bros, I'll admit that, but I really have to take a step back quite a bit to make sure I'm not spinning out of control with the research. We have a smart happy little girl who is a complete riot, who loves partying and she absolutely loves boating. Our life as we know it is pretty dang good, and I'm so glad I had this seasoned mom to remind me that things only would change for us if I let them.

Next weekend I get to deliver a Basket of Hope to a new local mom. I have to mention how grateful I am to the Down Syndrome Network of Oregon to give me this opportunity. Receiving that basket two years ago meant the world to me. I am so giddy to be able to meet this mom and her beautiful new baby boy. We have been in touch over the last few months and I feel like I know her already. Actually, there were two new babies born in the area on the same exact day, how awesome is that!? I just have to say it, welcome to the club new mama's!

This week's song is just a random one I love, and below is a photo of our big 2 year old. I will do a 2 year Ellie update post soon. :)

Where Do the Children Play - Cat Stevens