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

Mindfulness (I'm a Half-Ass Mom)

I am constantly researching, reading, and questioning everything related to Down syndrome. As a way to weed through the vast amounts of information available to me, I have changed the way I look at it all. When I hear about something more than two or three times, I take that as my signal to investigate further. That’s the only way I can keep my sanity when it comes to a new book to read, a new therapy tool, or a vitamin or supplement that may or may not help Ellie in the long run.

I use this method when it comes to regular life too. And in the past couple of weeks I have heard the word “mindfulness” at least five times. It was while watching a youtube clip, talking with my friends, as well as listening to a new book during my commute to work. Someone is definitely trying to tell me something. The definition of mindfulness is “the gentle effort to be continuously present with experience”. So I’m taking this as a sign, and I’m going to try my absolute hardest to make it a reality.

I've been asked lately “how do you do it all?” because I work full time, have 3 kids (two boys who are in sports and a daughter with special needs), I do photography, helped launch a non-profit, have a home to clean, meals to make, laundry to do (oh the laundry), and the list goes on. I've been jokingly replying “oh believe me, I’m on the verge of a mental breakdown”. Then I remembered my mom saying “thoughts become things” and damn if I didn't bring that thought to fruition! I am seriously about to lose it. I'm hanging by a thread and I think my husband is genuinely worried I will quit my job. I told Jesse “something’s gotta give”, and so I've decided it’s me. I need to be the one to change. I’m going to do my best to initiate change into my hectic and hurried life. I'm not "doing it all", and to be totally honest, I'm not even doing half of it. I'm half-assing it in the areas that matter the most and deserve my full attention.

My first step is that damn phone of mine. I’m always plugged in. Always. I'm embarrassed to admit it, but I’m addicted to that device. I always have it on the bedside table next to me at night. Some nights I will be online until 1am or later reading blogs and articles or chatting with new moms who need my support. I have a habit of continually checking my phone… work email, personal email, Facebook. In that order, over and over again. As if I'm going to miss something if I don’t look every 5 minutes. What has happened is that I am not giving my kids my full attention. It’s like half-assed attention as I’m trying to reply to a message. I need to look at my babies in their faces when they ask me for a juice box or a snack. I need to see their beautiful eyes when I ask them how their day was. I need to be in the present.



So I started a week ago. I put my phone down. I am only going to check it when the kids are not with me, or are in bed. I’m not going to be as frantic about checking my work emails when I’m not at work. It’s not what’s important, my boss even told me to quit doing emails at night! My kids are growing up before my eyes, and I feel like I’m not there to watch it. I’m also not bringing my phone to bed. I’m going to leave it downstairs so I don’t look at it every time it buzzes… halfway asleep with one eye open. Who does that? Oh yeah, I do.

The second area I’m going to try to work on is my eating habits. I have a 50% chance of Type 2 Diabetes because I had gestational diabetes when I was pregnant with Ellie. I love to eat and so does Jesse. We center our lives around entertaining and enjoying good meals. Not to mention yummy cocktails which are also bad for the waistline- OK maybe that's just my weakness. Our whole family has a love for pizza and blizzards from Dairy Queen. Even my almost 7 year old Will is known for saying “oh mom this is so bad.. it’s good!” My amazing friend sent me a TED talk by Sandra Aamodt about why dieting doesn't work. If you have an extra 13 minutes I suggest you watch it.

Sandra Aamodt: Why dieting doesn't usually work

As I was watching, I heard her say “mindfulness”. There it was again, that word! I just need to be aware of what I’m putting in my body. But I can't obsess over it. I tend to senselessly shovel Juanita’s chips in my mouth as I cook dinner. I need to take a step back and look at what I'm doing. Just be aware.

The third and last baby step I am taking is to be mindful during the nighttime routine with my kids. Jesse and I take turns putting the boys to bed. Usually they will both sit on our laps and Will gets his reading homework done. It’s been getting to where we are shortening it more and more.. “pick a shorter book”, “we are just doing prayers tonight you guys stayed up way too late”, “I’ll tell you one story, but it’s going to be a quick one”, “it’s way too late, no stories tonight you guys need your sleep”.

What am I doing? How much longer will my boys sit on my lap and snuggle me? Why am I shortening this precious time each night? These moments will end up being non-existent if I continue on this path. I tested myself this weekend, it was the middle of the day on Saturday. I had tons of stuff to do around the house, the list seems endless. Luke was cranky so I asked him if he’d take a nap. He is almost 5, so even the word nap stresses him out. I told him I would feed Ellie in the rocking chair and he could lay in bed and I’d tell him a story. He liked the idea. I ended up spending 45 minutes with Luke while Ellie drank her bottle and fell asleep. We sang songs back and forth. He was not shy about showing me how he knew every word to “Let it Go” and “Do you Wanna Build a Snowman”. I had no idea he knew every last word, I had no clue. That 45 minutes was awesome. He woke up happy and revived, and my heart felt full.

The best part of my week, the Saturday morning bed raid.

Parenting is a constant learning experience for me. From the wise words of my mama, “if something isn't working, change it.” Well it’s time for me to change. As a working mom, I have 4 hours at night with my kids during the week. 4 hours. That isn't a lot. And on sports nights, that time is cut in half. I have to be available and there for my babies, in body as well as mind and spirit. I’m so grateful for the nudges I have received these past couple of weeks. Mindfulness. I hear you, loud and clear.

Landslide - Fleetwood Mac