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

Welcome to the Club

I've been watching Season 2 of "Born This Way" on A&E, a reality show about young adults with Down syndrome. It follows their everyday lives, showing their triumphs as well as struggles. Every single episode I shed a tear, whether it's when Megan expresses her desire to have babies, when Elena and her mom go head to head, or the love Cristina and her fiance' have for each other. I love Sean's parent's humor and they remind me of Jesse and I, plus my boys are constantly singing "Shake Your Booty" by cast member John. I can't help but look forward to my future with Ellie. I'm learning so much from the parents who have walked this path before me. I'm also realizing I have so much more to look forward to. 

On a recent episode, Elena's mom was talking to the other parents about how hard it has been dealing with Elena's fragile emotional state. They comforted her, reassuring her that they are all there to help her through it. Then Rachel's dad said something that really hit home for me, and the tears started flowing. He talked about being in "the club". It is so true. We are in a club we never dreamed we would be in (unless you are Jesse and I and you literally dream your daughter with Down syndrome into reality!) And now I can't imagine not being in this club. It's something amazing that is for sure.

Just a little over a week ago I hosted a mom's lunch for local families. The Down Syndrome Network Oregon graciously sponsored the event and we had a huge turnout. There was about 150 people including the kids, all at my house! It was amazing! There were children from 1 month old all the way up to 15 years old. I was in awe watching the moms connecting and sharing their stories. All of the kids got along as if they had been playing together for years. It was a "heart is overflowing" moment for me. I also have to make a shout out to my mother-in-law Julie, my mom, and my best friends Jos and Allyn for helping me put the event together! I couldn't have done it without their help. Also, Jos took over 200 photos for me. Here are a few from the day, I had a hard time narrowing it down so I apologize in advance for the photo overload!

Helper Extraordinaires! My Mama, My Bestie, My Mama-in-Law

Ellie and her new buds :)

Babies galore!

Iris loving the pool!

Two beautiful girls.

Paula, one half of the amazing DSNO founder duo!

Brothers.

Little Miss Sunshine.

Cuties!

One of my closest local mama friends and her beautiful family

I am leaving Friday morning for a two night trip to Dallas, Texas to see over 100 of my closest friends. That sounds funny doesn't it? But it's true. We are all moms to children with Down syndrome. We have been each other's sounding board through surgeries, struggles, delays, successes, GI issues (some of you know more about this than you'd like), and navigating services, inclusion and more. This event is put on through the DSDN and is called the Rockin' Mom Retreat. We will have 3 days and two nights full of laughs, tears and relaxation. The goal of the weekend is for the moms to connect, inspire, and recharge. To say I'm excited would be an understatement. Here's a few photos from last year's event in Minneapolis, Minnesota.

1st Rockin' Mom Retreat - 2015 - Minneapolis, MN

Elevator fun!

The late night crew!

There for each other. Always.

This is our tribe. As our children grow, we will have each other through every  milestone, whether locally connected or connected virtually. The future isn't scary or lonely when you have others who get it. Our kids may end up living together someday, like Steven and Sean from Born This Way. Speaking of Sean I get to meet his Rockin' Mom this weekend in Dallas! And I wonder who will be in the first "Rockin' Wedding", I have my sights on Mason and Ellie for that title. 

I don't know what Ellie's future holds but I do know as her mom I am not alone, and never will be. How is it that a little extra chromosome can bring together people who would have otherwise never met? I also can't imagine not having my now-best friend Jos. Our girls brought us together and I'm forever grateful for that. 

Sweaty BFF's but having fun!

Have you found your people yet? The first step would be reaching out to your local group for face-to-face support. If you click this link, it will show you the organization closest to you. We have the DSNO and NWDSA local to us here in Oregon, both are amazing organizations that provide so many resources to families. And if you are new mama, "welcome to the club", you will love it here I promise. When you are ready, please find us on Facebook at the DSDN and join one of our many private support groups. And remember, you've got this, and we've got you.

My song for this week is one that reminds me of my fellow Rockin' Moms. I love you ladies so much and can't wait to see many of you on Friday!

Count on Me - Bruno Mars

How Can You Change the Face of Beauty??

Is your child a ham? Do they light up when they see a camera? Have you wondered what this whole Changing the Face of Beauty business is all about??

Well I am being totally serious when I say, send your child's photo in to your local agencies!!!! Do it! If Ellie can do it, your child can too!

Since Ellie has been booking modeling jobs I have received a lot of messages from other parents who want to know how to get started. I thought I would list the steps I took here for easy reference.

The first step I took was to google... I googled "child modeling agency" in the largest town near us. I had found two agencies that sounded good. I picked two photos of Ellie that I felt showed her "sparkle", one head shot and one full body shot. At that time Ellie wasn't walking so it ended up being a sitting photo, but it worked out just fine.

Here are the pictures I submitted:

When you submit your photos, there will most likely be an area in the form for comments. This is where I included the link to Changing the Face of Beauty, and I explained to the agencies why I am so passionate about CTFOB's mission. I also told them all about Ellie. 

Then I waited. I had submitted Ellie's photos in December and didn't hear back until March. One agency never called me back. But Puddletown did, and they have been absolutely wonderful to work with. You can see Ellie's talent profile here. We have had a lot of fun with the shoots Ellie has done for Hooray Haroo, Matilda Jane, and Fred Meyer.  She has a Fred Meyer ad that is supposed to run this week, so keep an eye out for it!

The posing. I wasn't going to add this tibit of information but I think it might be helpful. Since Ellie was tiny we have always had fun with her signature "model poses". Here she is as just a little nugget posing for me:

Just a few weeks ago my friend Joelle from Australia messaged me. Her beautiful daughter Josee Hope was asked to be a model for a company called Oobi. And not only a model, but the Unicorn Ambassador for their company - PERFECT!!! Joelle was nervous that Josee wouldn't pose for the camera. Here are some of the tips I shared with her:

The mirror: The mirror has helped us with Ellie's speech, teeth brushing, hair brushing, etc. We also would copy each other's faces in the mirror, so now she will copy any face that I do. It's a great place to start.

The iPad or phone: Letting your child videotape themselves making faces gives them instant gratification. This is another useful speech tool as a matter of fact!

Siblings/Mimicking. This one is HUGE. Mimicking and copying siblings has been a huge help in getting Ellie to do her poses. Even during her Matilda Jane shoot Ellie started to melt down, but then she watched Grandma Barb and copied her, you wonder where her sassy poses came from? 

So Joelle tried these tips with Josee who had never modeled professionally before. She absolutely ROCKED IT. You have to check her out, isn't she amazing??? Oobi Unicorn Ambassador Josee Hope

I was worried about whether modeling would be too time consuming for our crazy life. Honestly I wasn't sure if doing this would even be feasible since I work, but my mother-in-law has been a huge help, thank you Grammee!! She has taken Ellie to both of her Fred Meyer shoots, and the Matilda Jane shoots have been on the weekend, so I was able to take her! We are taking the jobs as they come and are figuring it out as we go. We don't know how long the modeling gigs will keep coming in so we have just decided to have fun in the process. We are also saving Ellie's money for her college fund!

As always, I am here to answer any questions you may have. Seeing children and adults of all abilities in the media is so, so important. It makes my heart swell with pride and excitement when I see more and more companies being involved. My hope is that someday it isn't a big deal and that it just "is", if that makes sense. 

Here are some of her latest photos that I love:

Her first Fred Meyer ad:

Behind the scenes at Matilda Jane:

The real deal, I think they turned out so great:

A few I took this morning:

For this post's song I'm going back to my high school roots (thanks to my niece Karley for rekindling my love for this music). Here is one of my faves from 20 years ago, and now it reminds me of my baby girl:

Beautiful, you're beautiful, as beautiful as the sun
Wonderful, you're wonderful, as wonderful as they come

Beautiful - The Smashing Pumpkins