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

This Is How We Do It - Down Syndrome Awareness Month

I am not sure why, but every aspect of my life is ruled by song. Today, like many many other days, I was singing Montell Jordan's "This is How We Do It". Because I can't say those words without singing them just like Montell. I wanted to share how we do Down Syndrome Awareness Month, which if you are my friend you are fully aware what Down syndrome is! So I like to call it Down Syndrome "Celebration" Month. Because I'm annoying like that, and we have a lot to celebrate.

Every year as October approaches I try to come up with fun ways to celebrate. In the past I have inundated friends and family on Facebook with various facts about Ds and too many Ellie pics. I've visited the boy's school and read books. Our favorite one to give to the class is 47 Strings. Some other great choices are The Courage to Be Kind and We'll Paint the Octopus Red. We always wear our cute advocacy shirts. There are a ton of wonderful businesses who make Down syndrome awareness shirts, I'll list a few here (please note I am not getting free stuff for saying this!) 
Reeve's Tees (Homies Shirts!)
Gabe the Babe & Co (Advocate, Educate, Celebrate Shirts, 47>46)
Littlest Warrior (Be Kind ASL Shirt, The Lucky Few)

This year I decided it would be fun to do a school visit for all three kids now that Ellie is a Husky like her big bros! And I wanted to show a video in each class instead of reading a book.

First stop was supposed to be Ellie's preschool class, but she was sick! So instead I sent in a copy of 47 Strings as well as the adorable cartoon called Everyone Counts: My Friend Isabelle which I thought helped explain Down syndrome in an easy way for 3 and 4 year olds. It's so cute! I had planned on giving out multi-colored goldfish, reiterating how the fish are all shaped the same but are all beautiful different colors. Just like us, although we are all different, we are still all the same. Those are still sitting in my kitchen, I plan on making a class visit in November.

My friend Cathleen who blogs over at Foursmalls used the concept from the One Page Profile and made an awesome info sheet about her cutie Sam for school! I loved it so much so I decided to make one for Ellie too. Her teacher will send a copy home with each child so their parents can also talk to them about Ellie. Here it is, and below I'll share the template for anyone who would like to use it! If it seems odd that I'm sharing the template, it's because the One Pager received a lot of attention and I have spent the past few months walking people through making their own. I finally figured out an easy way to share the template, as you can see below. I have also updated the One Pager post with the same, if you need a template for that for your IEP, IFSP, Transition Meetings, etc.

Here's the link to the template (save yourself a copy in order to edit, instructions below!)

DS Awareness Month Poster Template

And instructions to save your own copy:

Our first stop was Luke's 3rd Grade class with Ellie in tow. A friend of mine said "so in other words you brought her in like show and tell?" And yes, I did, and it was very impactful for the kids to meet her in person, play with her, read with her, and get to know her. I have one word for this experience... tears. I decided to let my boys choose what we would show to the class, and Luke chose the video "True Colors" by Matty B. His class had already read 47 Strings, so I started off by telling them how Matty B has a sis with Down syndrome just like Luke. Many of the kids knew of Matty B, and were excited to watch the video. Once the video stopped and I turned on the lights, over half of the class was in tears. They were so touched by the message. They ended the visit by singing "If your happy and you know it" and Ellie lead the class. I teared up too many times to count.

In Will's 5th grade class, he asked that we show the video "Just Like You". This one is a longer video but was great for this age group. I started off this presentation by explaining who I was, that it was DS Awareness Month and I introduced Ellie as Will's little sis. I let them watch the video first, and told them they could ask me anything about Down syndrome and that there were no bad questions. These kids could have asked me questions all day, and they had some great thought-provoking questions. For example, one boy asked if Ellie had a baby, if the baby would have Down syndrome. I told them it's a 50/50 chance. Another boy raised his hand and said "so if her baby has Down syndrome and it has a baby, what are it's chances of having Down syndrome?" I probably looked like a deer in the headlights, and Will's teacher joked "that would make you a great grandma!". The kids loved asking "what is a chromosome?", "what is the r-word?", "is Down syndrome contagious?". 

Last year the boys gave their friends something that reminded them of their sis, so Will chose "Extra" gum to represent the extra chromosome and Luke chose "Sweettarts" to represent Ellie. That one makes me giggle because I always say Ellie is like a Sour Patch Kid, first she's sour then she's sweet. Boy is that the truth! So this year I asked again, and they said "something sweet!!!", so we picked Hostess cupcakes and twinkies. Costco has a box of 32 for $6.99 and they are Halloween themed so the kids were totally excited! Sorry teachers.

What I have come to realize in the almost 5 years I've been Ellie's mom, is that Down syndrome is something that you don't understand until you do. Sounds silly, right? But when I first started talking to the kid's classes when Ellie was just a tiny baby, they had no idea what it meant to have Down syndrome. I'm watching first-hand as the kids are growing up, how they now "get it". I walked through that school that day and kids from other classes were yelling "hi Ellie!!" and wanting to talk to her and high five her. Down syndrome isn't scary and these kids love her for who she is. As she enters this school in the future, the kids will all know her already. They will understand why low tone makes it harder for her to hold her pencil, or talk clearly to her friends. But they will also understand that Down syndrome is a part of her and that she is awesome just the way she is.

As I was writing this post Jesse walked by and read the title and sang it just like Montell. So you guessed it, I have to add the song to this post for your listening pleasure, and sorry if it's in your head now! 

This Is How We Do It - Montell Jordan

As Long As It's Healthy, A 77 Year Old Pregnancy

As I rummaged through the area under the sink, my mom stood next to me nervously fidgeting with her hands. I handed her the Dixie cup and a few moments later we saw two little lines. Pregnant! I cried tears of joy and amazement “I cannot believe I get to experience this with you, mom!” She gently rubbed her belly and said “I think it’s a boy, I can tell by how I feel.” We were giddy and excited like we were sisters. I was then outside and in the distance was a sparkling water tower with bright orange pumpkins at the top. I made a mental note to take photos of the kids there sometime. It was the golden hour and the sun was shining beautifully and the light was perfect. I pulled my mom close to me and we googled “77 year old pregnancy risks”.  The next thing I remember is being startled awake by the sound of my alarm clock. I smiled to myself and thought “oh man I can’t wait to tell my mom about this one”.

That morning I did what I do every day, I called my mom. “Mom, I just had a dream you were pregnant!” She giggled and said “I better go to the casino, maybe it means I’ll meet a guy!” She always makes me laugh. So then we had a whole conversation about stories of women past age 60 having babies, I reminded her to be careful. “I wonder what a 77 year old’s risk of having a Down syndrome pregnancy would be?” we giggled some more. As I explained the random pumpkins and the water tower, she said “OK you know what is weird, I’ve had a reoccurring dream and fear since I was a little girl of water towers.” Her brothers would simply walk by her and say “water tower” and she would cry. Dreams sure are trippy, aren’t they? I wonder what it all means.

Me and my mama

I can tell you exactly why I’ve been dreaming about babies and pregnancy though, it seems that everyone at work is pregnant. The two girls that sit next to me are pregnant and have the cutest little baby bumps. We talk about babies every day. I was talking to one of the girls right before her gender ultrasound. I said “so do you think you’ll have a little sis for your daughter or a baby bro?” She looked at me and said “I don’t care, as long as it’s healthy”. Then I could see her body language shift. She said “but, I mean, if it’s not healthy that is OK too...” I could tell she had one of those “oh crap” moments, like maybe she said the wrong thing to me.

This conversation brought me back to when I was pregnant with Ellie. Every night Jesse and I have a routine of going upstairs and kissing the kids goodnight before we go to sleep. Every single night during my pregnancy with her, I would go kiss my boys and then rub my belly and say a prayer “please Lord bless this baby, and please make sure she is healthy”. I had a rough time throughout my pregnancy and always worried that she wasn’t going to make it. I had bleeding for weeks, gestational diabetes, thyroid problems, and she was in an odd position in the womb to which doctors had no explanation.

My Ellie Belly

After the birth of our girl, I remember crying to my mom. Through tears I said “but mom I prayed every night that she would be healthy.” She looked me straight in the face and said “and she is, honey.”

Ellie with Grandma

I know once you join the Down syndrome club, and you hear other moms saying how all they care about is that their little one is healthy, it can hurt a little. Like they don’t want a baby like yours. But I’ve come to realize that there is nothing wrong with hoping your baby is healthy. One thing we all have in common is that we don’t want our little ones to hurt or suffer. We are protective and love these little beings more than life itself. So “as long as it’s healthy” doesn’t bother me anymore. Because I prayed that our girl was healthy too, and she is, honey. 

Ellie and I

This week's song was one that popped up yesterday on Pandora, and I immediately sent it to my brothers. Yesterday would have been my handsome dad's 80th birthday, so of course I always think he's saying hello by sending me beautiful music to listen to. :)

Timshel - Mumford and Sons

The Parent's Guide To Down Syndrome: Book Review Time!

Hey everybody, guess what time it is? It's book review time!! 

Please read on for my very first book review of The Parent's Guide to Down Syndrome by Jen Jacob and Mardra Sikora. 

Full disclosure: I received a free copy of the book and offered to share my thoughts on my little ole' blog. 

This book is AWESOME!

I would like to preface this post with a little trip down memory lane. On the day Ellie was born it was the same day the words "Down syndrome" entered our lives. My previous knowledge of Down syndrome was shaky at best, and I only knew of the character Corky from one of my favorite shows growing up "Life Goes On". I had never really known anyone with Down syndrome before and I realized that day that I had a lot to learn. And that realization felt like a ton of bricks to be honest.

On day two of Ellie's life, the Geneticist came to talk with us about Down syndrome, and with him he brought a list longer than my arm of the dreaded "potential health issues". The hospital also gave us a book (that shall remain nameless) that was filled to the rim with the same potential issues- from delays, sight issues, hearing issues, heart issues, gut issues, thyroid issues, issues, issues, issues! I didn't look at the book that day. As I gazed at my sweet bundle wrapped in pink I didn't feel comfortable thinking of her as a list of "what if's". She was my beautiful baby girl and I craved real life information. I needed to read stories about love and hope.

Once I settled in at home I went online and ordered a bunch of books for myself, all memoirs about Ds; A Good and Perfect Gift, Bloom, and Expecting Adam just to name a few. I read personal blogs and connected with other moms on the internet. That original book I received from the hospital is still tucked away on the bookshelf, collecting dust three years later.

So this leads me to my first ever book review. Thank you to my friend Jen Jacob (co-founder of DSDN) who mailed me a copy of the book so I could read it and share my thoughts. When Jen told me she was writing a book with Mardra Sikora I was giddy. Mardra is an amazing writer/advocate, and mom of Marcus who is a young adult with Down syndrome. Marcus is the author of an awesome kid's book called Black Day: The Monster Rock Band. These two gals are famous in the Ds world, and writing a book together? Are you kidding me? I knew immediately it would be a game changer.

The Parent's Guide to Down Syndrome covers it all. It is chock full of resources from front to back. It covers the prenatal through adulthood stages of raising a child with Down syndrome.  Every single topic within the book is relevant and important. But here's my favorite part: what sets this book apart from every other book I've read about Down syndrome is that it includes hope and love. Within each topic there are real life accounts of living with Down syndrome. The commentary is from parents as well as people living with Down syndrome. THIS. This is exactly what I needed in those early days. THIS is what I was craving, to hear from the people who were living it. The people who were there to tell me "welcome to the club" and "your going to be OK". And now three years in, it is still what I need. I will be referencing this book for the next 18+ years I'm sure of it.

One other huge plus for me was the neutral way in which the information was presented. The world of Down syndrome can be controversial in the number of avenues a parent can take, whether it's neurodevelopmental therapy, vitamin therapy, PT/OT/EI/ST, schooling options, inclusion versus seclusion, and the list goes on. The information is presented professionally and leaves the reader feeling empowered with the resources needed to make decisions that work for their family. 

If you have a child with Down syndrome, or are expecting a child with Down syndrome I highly recommend you grab a copy of this book for yourself. This will now be my go-to gift for new families I encounter who are just starting out on this journey. Thank you to Jen and Mardra for creating a resource for families for years to come. I wish I could go back three years ago and read this book, to know that I am not alone and never will be. What an amazing feeling that is.

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

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

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!