Keep Your Eyes Open and Your Mouth Shut

On Saturday night Jesse and I took the kids out to dinner. As we sat there sipping our drinks and waiting for our food, a familiar song started to play. I pointed up and smiled at Jess, and he winked back at me with understanding. "Knocking on Heaven's Door" was playing. Although Jesse never met my dad, he knows when I have these little moments of recognition, or "woo-wooness" as we like to call it. I'm lucky that over time he has also come to appreciate these little winks almost as much as I do.
"It doesn't surprise me he's playing songs for me" I said. "I feel him around a lot lately... 20 years on Monday". Then Luke mentioned "mom Popeye visited me at school last week". I questioned what he meant. "An eagle flew over during recess, it was pretty cool" he explained. That story lead me to retell how the eagle flew over during our wedding vows. And about the time my best friend Candice and I were visiting my dad's grave. We were talking about my dad and the eagle connection and an eagle flew right over us. We squealed with wonder and nervousness, both covered in goosebumps. This eagle phenomenon has happened a lot over the years, and we always say "hi dad" when we see one. 

I then told another story to Jesse and the kids, a story my brother recently shared with me. It was April 16, 1987 and my brother Kevin had just enlisted in the Army. Upon leaving for basic training my dad wished him well with these wise words...

"Keep your eyes open and your mouth shut."
It was advice that my brother would reference often as his Army career progressed and as he entered adulthood. He still uses my dad's advice to this day.

Fast forward 11 years, on April 16th 1998. Kevin was at work and my dad's wise words popped into his mind. Out loud he said "keep your eyes open and your mouth shut". "Huh?" his coworker looked at him confused. "My dad said that to me 11 years ago today, I need to go see him." He packed up and headed out for the 45 minute drive to my parents house.

When Kevin arrived to my mom and dad's that evening, I was already there. I had just returned from a beach trip with my boyfriend. At 19, the last thing I wanted to do on a Thursday night was see my parents, but my boyfriend insisted. My dad had been battling his second round of cancer and had not been feeling well. To see him this way was difficult for me and my selfish teenage self was not feeling up for a visit. 

That night my dad passed away. He had been sick but looked good, so we were all blindsided by how fast it happened. My brother Kevin and I were there with my mom when he took his last breath. That moment changed me forever. It also instilled a belief that there is more to life than just our time here on earth. I saw his face when my mom told him it was OK to go, and to go be with my Grandma Hattie. His face washed over with peace, and I knew then that heaven exists. He was welcomed with love and we all saw it.

My loving, funny, tough as nails handsome teddy bear dad has now been gone for longer than I knew him. That is hard to quantify in my brain. He is still around us every day, his memory is alive and his essence lives on. I see him in my brothers, and now in my own children.

What his leaving did teach me is that life does go on even after a painful and unimaginable loss. It doesn't mean I don't miss him any less, but the sharp sadness does fade as time goes on.  Life will never be the same without him, but it is still an amazing and happy life.

As I get older and my children grow, I know I'll continue to watch how my dad lives on in them. Will's smart ass wit and cop brain could not have come from anywhere else. My dad wasn't a fabulous artist but his creativity was unlike any other, and Luke's creativity had to come from my dad. His artistic ability is from Jesse though, that's for sure. And Ellie, oh little Ellie. I was told once that she was sent here by my dad to heal my heart. To make that statement even more unbelievable, I have a blog post titled "Ellie's Healing Hearts" that I have yet to share. It's a long and painful story and I hope someday I'll have the courage to hit "publish". 
Ellie is now 5 and she still talks about Popeye. She tells me all kinds of things, how he's at work, or over at Grandma's house. He tends to visit her at night around bedtime. As creepy as this may sound to some, I believe it to be true. All three of my kids did this with him. The boys grew out of it around age 3, but Ellie is still talking to him, blowing him kisses, giving him air hugs and keeping his spirit alive.

Almost every day I receive some sort of gift or sign from my dad. For example as I was driving to work on Thursday I was thinking about him. I looked at the car in front of me and the license plate was 416. Maybe it was just a coincidence, but I will take it as a little angel wink. He may not be here in body, but his love is definitely here. My mom believes that when we die, our love stays behind. And this makes sense to me because I believe when you love someone it is on a soul level, and that never goes away.
Do you have a loved one who has passed who you feel is still around?  There are so many little signs from those we love, it could be as simple as a penny left on the ground, a specific animal crosses your path, a special song comes on the radio or the lights flicker when you think about them. People have told me that they don't understand why the woo-woo experiences happen to me, but it's simply because I am always looking. It happens to all of us! It is just a matter of keeping your eyes open :)
As I edited this post Sunday night, I was making dinner, sipping a glass of wine and deleting and rewriting every sentence.. the song "Wish You Were Here" by Pink Floyd came on. You know what is funny? This one reminds me of him too. And when I went to a psychic 3 years ago (no judging!) she told me "your dad loves when you notice he plays songs for you". So there you go. Thanks, dad.
For this post's song, I am choosing "Knocking on Heaven's Door" but the version by Antony and the Johnsons. We love this one because it actually sounds like my big brother Matt's voice. Listen to it, it's pretty awesome.

Knocking On Heaven's Door - Antony and the Johnsons

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

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