A Letter to our Daughter on her First Birthday

            

Dear Ellie,

It was five years ago when your daddy and I both had dreams about you being in our lives. To be honest, it scared us. It scared us so much that we had decided not to have anymore kids. 

The day I found out I was pregnant with you, you surprised us again. Once the shock wore off, we were ecstatic and couldn't wait to meet you.

When the doctors told us to prepare to lose you when I was only 10 weeks pregnant, you surprised us again and you kept growing and getting stronger in my belly. 

When we found out you were a GIRL you surprised us again. We had thought you would be a boy based on our track record. We were so excited!!

When the doctors told us you had a heart problem when I was 38 weeks pregnant and that you could come out blue, you surprised us with your adorable little pink body and cute girly cry. 

When the doctors told me my tests were negative for all trisomies, and you were born with T21 you surprised us. But we had already met you in our dreams so we were comforted in knowing that you were just where you were meant to be.

When the doctors listed off all of the medical problems you could have, including sight and hearing problems, thyroid issues, heart and digestion diseases, you surprised us. You were cleared by the cardiologist at 2 months old. You have passed all your hearing and vision tests. You have none of the problems that the doctors warned us about. 

Every step of the way you have blown us away. You have the ability to bring joy to every person you meet. You are inquisitive and smart. You are starting to talk and interact with everyone around you. You gently lay your hands on your brother’s face when he is crying, comforting him and making him smile. You have the cutest laugh and your brother Will brings it out of you the best. You are so loved by us, as well as all of your aunts, uncles, cousins, brothers, grandparents and friends.

                         

You are a daddy’s girl to your core. You light up when he walks in the room and give him the biggest hugs and kisses of all. If he's had a hard day at work, he loves to snuggle you because you somehow make everything better.

                      

On your first birthday I want to thank you for choosing us to be your parents. We are so lucky to have you as our little girl. You make us so proud. We know you will continue to shine as you grow. We can't wait to see what you accomplish in this life. Everyone tells us how lucky you are to have us as parents. But I can tell you this, we are the lucky ones, thank you for being our daughter.

Love mom and dad.

                     

Your daddy chose the song for this post, and I think it's perfect for you baby girl.

Stevie Wonder - Isn't She Lovely

A Gift of Possibility and an Ellie Update

This post is going to be a photo bombed update on Ellie, but first I wanted to write about a something very near and dear to my heart. 

A group of us mamas with babies with T21 have embarked on a journey together. Our mission is to help new or pregnant moms receive accurate and up-to-date information when receiving a Down syndrome diagnosis. My friend Jenny was able to explain it much more eloquently on her blog Blessings Beyond the Ordinary. The first step we are taking is sending out our personal Christmas cards to medical providers. Our hope is to give them a glimpse into what life looks like... and how it's just like any other family! If your child has Down syndrome, please join us and send your card to your medical community too! Our pediatrician, the Ds Clinic, and my OB will be receiving our card this year. This should be interesting as my relationship with my OB ended on an awkward note... more on that another time!

Our 2013 Card

I also wanted to update on what we've been doing the past couple of months.  Ellie is now 11 months old. We have had a really fun and crazy busy couple of months since my last post. Ellie has had her first Halloween, Thanksgiving, attended a fancy gala, met Santa Claus, met new friends named June and Katie, and is meeting milestones on Ellie time. 

Ellie's mentor Iris was featured on the cover of the 2013 Nike Special Olympics Youth Games Booklet. The Youth Games invited Iris and her mom to the Governor's Gold Awards. They were given the option of bringing a guest, and Ellie and I were invited to go to! All proceeds from the event benefit the Special Olympics. It was such an honor and a night I'll remember forever. We were served a nice fancy dinner and Ellie and Iris were the only children there from what I could tell. They were such good girls and sat patiently through the whole event and were adorable and smiling the whole time.  What an amazing opportunity!

Iris on the cover of the booklet, little rock star!

Our girls all dressed up!

Speaking of Iris, I have to share some fun things she has been up to lately. She had an opportunity to be in a new movie with Reese Witherspoon called "Wild" being filmed in Portland! I'm anxious to watch the movie to see if Iris makes the cut. And I am in love with this video of Iris busting a move in San Francisco a couple of months ago. Miss thang has some serious skills! It has been really great to have Iris as Ellie's mentor. I'm asking her mama questions daily and am learning so much. I am one lucky gal! 

Iris Breakdancing

Ellie is still getting bi-monthly Physical Therapy and Early Intervention. I'm lucky that my mom-in-law is here two days a week and my mom is here on Fridays with me. They help out a lot with her therapies, and it's nice to all be working on the same things with her. Ellie is working hard every day and can stand perfectly when you hold on to her hands, but isn't ready to stand on her own yet. The other night, however, Luke was playing with her, stood her on her feet, and let go. You should have seen the look of excitement on her face! She stood for a few seconds and as I was screaming for him to grab her, I snapped a picture (BAD MOM!) but she's fine, she didn't fall! Her crawling is not happening yet. She gets up to crawl and when she tries to take off she gets in skydiving mode. See below. She'll get it, it's just taking a little extra time and that's OK. She is also waving now, playing peek-a-boo, as well as "how big is Ellie" which is the cutest. Here is a video of some of her neat milestones the past couple months:

Ellie 10 Months Old

Look at me, I'm standing!

Getting ready to crawl!

Annnnd she flies instead.

Trying Cheerios for the first time. Hmm...

Family Halloween Pic!

Thanksgiving at our house was a blast. We had 20 people and our house is STILL UNDER CONSTRUCTION. The remodel started in August and it's looking like it won't be done until after Christmas. I've decided that prolonging it will just make me enjoy it more and be more grateful when it's done... (keep telling yourself that!!!) Here's a pic of our table. Luckily my mom set the table for us because I have no clue when it comes to this stuff. 

The long table(s)

Jesse smoked and cooked a 25 pound turkey on our traeger and it was AMAZZZIIINNG. Speaking of my talented hubby, he made me a barn wood wall too. I LOVE IT! And it works great for a photo backdrop. Ellie was snuggled and kissed and showed off her new skills all night long. All in all, it was a great day and our hearts and bellies were full! Here are a few photos from that day.

The wood wall, and beautiful kids.

With Uncle Kev and Grandma Barbara

Grammee calls this "getting the party started" and I am loving the coordinating outfits!

This is what she does when you say "how big is Ellie?" 

We finally met my friend Kim's sister June. Kim was my friend I talked about in my last post. Kim invited us to watch June perform in her Cheer Showcase. June is awesome, sassy, beautiful and has the best giggle I've ever heard. I loved talking to her and seeing a glimpse of what Ellie could become. I have to admit I teared up a couple times watching June's cheer performance at StyleShock Cheer and Dance.  And you best believe I will be signing Ellie up for the program when she's old enough! It was so inspiring to watch the performance and meeting June and her mom made my day. Thank you again Kim!

Ellie and June at the Cheer Showcase

While I was standing chatting after the performance I met a mom of an 11 year old little girl named Katie who has Down syndrome. This woman was a wealth of information. Her positive outlook was inspiring to me. Talking to Katie about the slumber party she had the night before with her BFF made my heart smile. She seemed like any other 11 year old to me. She is absolutely gorgeous and we talked for quite a while. She was wearing pretty green eye shadow and I couldn't help but think of our girl when she is her age. I swapped numbers with her mom and am looking forward to learning from her in the coming years. Here is a photo of beautiful Katie. I also want to share an uplifting and inspiring article that was written about her last year. Isn't she just wonderful??

Article about Katie

Katie at the Cheer Showcase

Yesterday we took the kids to see Santa. I loved when Luke nervously told Santa he wanted a purple Easy Bake Oven, and how Will told Santa he wanted Pokemon cards only to realize afterward that he forgot to tell him which ones. While no one was looking he whispered to Santa all the names of the cards he's hoping for. Ellie wasn't sure what to think, but she didn't cry so that was a plus! She just stared curiously at him, and at his beard. 

I think she's questioning the beard. I know we were!

We are really looking forward to Christmas this year. It is crazy to think that this time last year I was hugely pregnant and oblivious to the journey our life was about to take. We had no idea what 2013 had in store for us. I'm especially grateful this year for our family and friends because we couldn't have made it through this year without the constant love and support from them. I'm also amazed at the magic around meeting other families who are in the same shoes as us, it's almost impossible to explain. But what I do know is that it feels right and I know we are exactly where we are meant to be.

The song I chose for this post is one of my all time favorite Christmas songs. This part always gets me misty-eyed, and this year it means more than ever. 

I remember dreaming
Wishing hoping praying for this day
Now I sit and watch them
The little ones I love so excited by the wait 

Christmastime - The Smashing Pumpkins

The "R" Word

Back in July I shared the below on my Facebook page regarding the R-word. 

"Growing up, I used to use the word "retarded" to describe something that was stupid. I've removed this word from my vocabulary- and ask that next time you say it please think of this little face.  it's not funny, it's hurtful. Thanks my friends" 

I'm still new to this "advocating" business but was feeling pretty happy with the outcome. I was overwhelmed with the amount of love and support I received from this post. I had friends reaching out to me that I have not talked to since high school saying that they still say this word, and had never thought of it being offensive. But now they were "aware" and would think of Ellie first. I had other friends and family members who knew all along that it was offensive and it had never been a part of their vocabulary. It was the first step I had taken to stick up for my daughter. I felt good and like I was making a difference- even if it was baby steps. But I'm finding that there's still a lot of work to be done.

The very next day, I was in the office of someone in leadership function in my company, and at the end of our conversation he said "it's just so retarded!" referring to something work-related that was stupid. I was frozen. I didn't say anything, just smiled and walked out of his office. I had a moment where I wanted to smack myself in the forehead and say "IDIOT" like Chris Farley. I had an opportunity to stick up for Ellie and I didn't take it. I folded like a cheap suit (as Jesse would say).

My awareness of this word being inappropriate did not come to fruition with the birth of Ellie. About 4 years ago, I was in the lunch room at work chatting with a good friend and co-worker, Kim. We were talking about switching from a PC to a MAC. I had never used a MAC before and am not confident in my skills. As we were talking I said "I can't switch computers, I'm retarded as it is!" and at that moment, as I was looking at her, I thought of her sister. My friend has a sister with Down syndrome. We continued our conversation, her facial expression or demeanor didn't change at all but I walked away with a lump in my throat and my foot in my mouth. I felt like a complete jerk. Upon getting back to my desk I was almost in tears and sent her an apology email. Of all people, I should know better because I have my brother Danny. Why the hell did I JUST NOW realize this word is offensive!? What is wrong with me?! She was very sweet in her response back, but that experience has stuck with me since that day. And when Ellie was born, one of the first people I reached out to was Kim. She even joined us for our first Buddy Walk in Ellie's honor! Thank GOD she forgave me!

One afternoon when Ellie was around 6 months old, Will was playing video games with his buddy. This little boy said "Argh, the guy in this game is so retarded!" Immediately I heard Will say, "Hey! That's a bad word, you can't say that in our house!" I was so proud of him. I know lots of kids use that word and have no idea that it can be hurtful. He had no problem sticking up for her. Why can't I be more like him?




As time is ticking on, I have had some very candid conversations with family and friends about saying the R-word. Luckily I am comfortable enough to bust out our close friends when they say it, but I also am afraid of being that "overly-sensitive mom". I finally had a full blown open-hearted conversation one night over cocktails with my closest girlfriends. My friends were saying that when they say the word, they aren't talking about Ellie. They are just using it to describe something that was stupid. That it wasn't in reference to her, at all! As hard as I tried to explain that it's offensive and hurtful to me and to Ellie, they explained I need to focus on who is saying it and the intentions behind it. So with that, the conversation ended and we did not come to a truce. I was feeling like that overly sensitive new mom to a kid with special needs again. Over the past few days the conversation was sinking in and I decided to ask my brother Danny. I can't ask Ellie how she feels when people say the R-word, so I asked him. Here are his answers, from his point of view:

Me: "Danny what do you think of the word retarded?"
Danny: "I don't like it."

Me: "Have you ever been called retarded?" (I already knew the answer to this from stories I've heard about his childhood but wanted to see what he said)
Danny: "Oh yeah, all the time. People used to call me that in school."

Me: "How did it make you feel?"
Danny: "It was painful. Finally in 7th or 8th grade dad told me to stick up for myself. So one day a kid said I was retarded and punched me in the stomach, so I punched him back. I was suspended for 2 days, and it was a couple of the best days of my life! Then in high school, a kid called me retarded and I grabbed his shirt and I said "I just have a learning problem, I'm not retarded!" It got a lot better in high school. Some of the kids would stick up for me."
Side note.. my dad was a cop in Brooklyn, and a tough guy, I'm not condoning violence by any means! :)

Me: "What do you think of people saying something is "retarded" if they are talking about something being "dumb" or "stupid"?"
Danny: "It hurts my feelings and people make fun of me because I have a mental illness. I don't like the word, however it's used. It's painful to hear."




What I've learned from "the horses mouth" AKA my brother... is that yes, the word retarded is offensive to those with intellectual disabilities. I honestly feel a physical reaction in my gut when I hear this word now, just like I do when I hear the N-word or someone saying something is "Gay". I've had people say to me "geeze, pretty soon we won't be able to say ANYTHING without someone being offended!" Well I disagree, I think there are plenty of other words that can be used in place of "retarded". Like for instance, I like to use the following:

IDIOT (with forehead slap)
Stupid
Dumbass
Dimwit
Idiotic
Foolish
Ignorant
Dipshit
Moron
Goon
Dorkus
Dumbshit

And I have a confession. This word has slipped out of my mouth a couple of times since Ellie was born.... I know, I felt horrible after I said it. And Jesse has said it too. But we are both trying, and that's all I'm asking our friends and family to do. Honestly, I'm writing this post because I'm driven by my fear of Ellie being called "retarded" someday. It was one of the first things Jesse and I talked about after she was born. We feel so protective over her and the thought of someone saying that to her literally feels like a knife in my heart. So please, please just think about it before you say it. That's all I'm asking. Thank you my friends.

My song for this post sums it all up pretty well. As usual, I was thinking about this topic and heard this on the radio. Love when that happens.

Brave - Sara Bareilles

I Can Kick, Stretch, and Kick! I'm 9 Months Old!

This post is going to be all Ellie, all the time. I just wanted to post an update on how she's doing, what's been going on around here lately and of course lots and lots of pictures.

She turned 9 months old on the 4th of October. It has been the fastest yet craziest 9 months of my entire life! She had her picture in the newspaper, started saying "dada" and "hi", participated in her first Buddy Walk, punished me for going on a business trip (see videos below!) and had her 9 month check-up with her Pediatrician.

First, I have to share this funny photo of her doing toe-touches in her sleep. She loves to do this! I am thinking we have a future ballerina or gymnast on our hands! "I can kick, stretch, and kick... I'm 9 months old!" 

Doing her high kicks.

Secondly, the DSNO asked if I could send them a photo of Ellie, they wanted the one of her crying with her big brother Will.  It was going to be for an "ad" but in my mind I just figured it was some sort of internal email or something for the Down Syndrome Network. I received an email from my co-worker that said "is that Will or Luke in the picture with Ellie in the paper?!?" She emailed me a photo of the ad in the Portland Tribune. It was the cutest thing I had ever seen! I got a copy so that I could keep one for her baby book. Ugh darn it that just reminded me that I still haven't written anything in there yet. This blog will have to do!

Look at that face!

Leaving the kids for the first time during my work trip was hard because I was so worried about how they would do without me at home, and I also worried about how Jesse would handle everything by himself. Well Will and Luke did great with daddy, and they had a lot of fun "guy time". Jess was a rock star Mr. Mom, all the mom's at soccer were impressed with his skills of juggling the 3 kids at practice. I wasn't really worried about Ellie, I told myself "she's 8 months old, she won't even know I left!" Boy oh boy was I wrong. I underestimated her big time. She was so upset with me. It makes me feel like I can never leave her again! She couldn't even look at me without her bottom lip sticking out a mile. Check out the video here:

Ellie Mad at Mommy

It took her a few hours before she would smile at me again. Later that day she was jumping in her jumperoo and being her cute self, and I got her on video saying "hi", see if you can hear it! I felt like she grew up so much in the 8 days I was away! And please excuse the house, we are under construction :-/

Ellie Says Hi

Then she said "dada" on video, I couldn't believe it! Our little girl is growing up and meeting milestones. We are so proud of her.

Ellie Says Dada

Here are a few more of her milestones she's been reaching:

Holding her own bottle, she can only do it for a little bit but it's a start.

Sitting up unassisted and getting stronger every day. 

We walked in our first Buddy Walk, it was so much fun. When we arrived at the park, the first thing I noticed was "Somewhere Over the Rainbow/It's a Wonderful World" was playing over the speakers. I had instant tears (and goosebumps) as did my mom, mom-in-law and sis-in-law. This song reminds our family of mine and Jesse's wedding. If you know me, I'm always looking for "signs" and hearing this upon arrival was a good and happy one.

The date of the walk was postponed a week due to horrible Oregon rain, and the new date couldn't have been more perfect weather-wise. 10 or so of our walkers couldn't make it but we still had such a blast. I got to see a lot of my new friends from the Ds community and introduce them to our family and friends. Seeing our two worlds come together felt right, like puzzle pieces falling into place.  There was magic in the air that day, and I felt especially grateful for our support network. 

I had set a goal of $1,000 for our fund raising, thinking it was lofty, and was blown away that we ended up raising $2,900! My employer (Columbia Sportswear) matched employee's donations and it put us over the top. I was absolutely amazed by the love and support that poured out. Our hearts are so full.

Team Ells Bells!

Family picture :)

New but lifelong friends.

Famous Iris, Ellie's mentor!

Love this one of Grandma and Ellie

Ellie also had her 9 month doctor's appointment. Every time I take her in I brace myself... will there be something wrong? Why oh why do I do that to myself? The lady at the front desk gave me a "9 month milestones" questionnaire. I felt my heart sink. I wanted to say "is this for typical babies, or babies with Down syndrome?" Then I realized I was doing "it" again! Stopppp worrryyyinnnnnggg and stoppp doing THAT! I sat down and filled in the questions, and to my surprise Ellie is doing great. There weren't any questions about crawling (no she hasn't mastered that one yet!) but lots of questions about playing with her toys, saying "dada or lala" etc. And she's doing all of these things! Dr. Craft was awesome as always, he's so sweet with her and genuinely cares about her. He also told me that babies that are breech (and female) tend to have issues with hip dysplasia. She had an x-ray just to make sure all is well, and so far so good.

Those hips don't lie! :)

Oh and she continues to be a long string bean, I can't believe how tall she is. These percentiles are on the "typical" baby chart. I think she is as tall as the boys were at this age!!

Height: 29.5" (96th percentile!) 
Weight: 16lbs 6oz (10th percentile!) 
Overall doing amazing. I'm so so proud of you baby girl. Keep up the good work and happy 9 months!!!

Wearing my dad's boatin' hat!

You like my Halloween costume?

When choosing the song for this post, I asked my husband to come up with one... "what sums up this post, about life in general, and our awesome family and friends?" He wanted me to use "Family Tradition" and I thought it fit great. This is a song we put on our wedding CD that we handed out to our wedding guests (another wedding reference)! OK honey- that'll work!

Family Tradition - Hank Williams Jr.

The "What If" Game

The "What If" Game. Do you ever play it? I do. As much as I try not to, I do. I tend to wonder "what if", even though I'm a true believer that life "happens the way it's meant to".

Sometimes on my drive in to work, my commute will take me up to an hour. This gives me a lot of time for my mind to wander. Too much time, really. I often play this game in my head. It's a mind bender, that's for sure. Growing up, my mom used to joke about how my dad dated Barbra Streisand. My mom used to say, "Barbra Streisand could have been your mom, I wonder what you would have looked like!" and we would all laugh. I still wonder about this story and would love to someday ask Barbra if she really dated my dad. Supposedly it was in Brooklyn, New York in the mid 1950's. Was this a tall tale, or did it really happen? My mom swears it's true, my dad did too. What if they would have stayed together? I love the mystery of it all.

My dad in Brooklyn in the 1950's

My mom and I were talking last week during my long commute into work, and she brought up how I was supposed to study art in Italy my freshman year in college. I didn't realize how pissed she was that I didn't do it. She reminded me how she begged me to go, how it was an amazing opportunity for me. I just didn't go. I totally wussed out. My mom paid the non-refundable deposit, and I boaged. I had a boyfriend at the time and didn't want to leave him. She told me again what a shame it was that I didn't go. How I could have grown, seen the world, and how opportunities like that were rare for an 18 year old. But I reminded her of something. I met Jesse that fall, 16 years ago, in a screen printing class. "What if I went to Italy, mom? Jesse and I never would have met." She agreed with me, "I didn't think of it like that! I guess you weren't meant to go to Italy!"

So young and fresh!

Since we've had Ellie this thought comes up a lot. More than it should, really. What if Ellie didn't have Down syndrome? What would our life be like? I can't help it. I think it's a natural instinct to wonder. I have thought about it a lot and I've come to a conclusion and I would like to explain it here. If Ellie didn't have Down syndrome we would: go boating a ton, get an opportunity to take an "adult's only" trip to Ireland, have lots of parties at our house, go on a special family vacation where we fish every single day and drink cocktails by the sunset, go on a business trip to Asia, do a complete home remodel (including a new kitchen), have to deal with our family moving away to Vietnam for 3 years (which is devastating yet exciting all at once), decide to throw Thanksgiving at our house for the first time ever, and live life to the absolute fullest. But wait... we have done all these things. 

Boating and loving it.

Fishing off the dock

Ireland, July 2013

The cousins together for the last time, the day before the big move to Vietnam

Ellie has Down syndrome, and we have done everything we ever dreamed we would have done. I never thought this would be possible when she was born. I was so scared about the "what ifs"... but I'm finding that it's better than I could have imagined. The relationships with our friends and family has deepened. We have met families that we have a connection with that is indescribable. We never would have met them otherwise. I have met mommies online that I connect with on a level deeper than I've ever experienced. I have met mommies in real life who I already know will be lifelong friends. Our souls are connected, because of Ellie. I can be me, I can be real, and I can tell them my fears and hopes for Ellie and I am understood. I really feel that this is the way our life was meant to turn out. I am so grateful.

I leave Tuesday for a business trip to Asia. Jesse will be with all three kids by himself, and I know he will do great.  We are finishing up our remodel in the next month. We have gotten the OK from our families to throw Thanksgiving, a first for us. And it'll be both of our families combined so that'll be a first too! We have many more adventures ahead of us, and many more firsts.

So when I think about the "what if's" I will be reassured that I am exactly where I'm meant to be. I am grateful for the path my life has taken. I am excited for the challenges ahead and the joy that my three kids will bring me. I can't imagine my life any other way. I also think about that Italy trip, and how I never went. And how when Ellie was born the big talk was the "Welcome to Holland" story. About how raising a child with a disability is like thinking you are going on a magnificent trip to Italy, but instead you end up in Holland. Which is beautiful too, it's just different. Well I'm finding that having Ellie is an adventure far beyond any beautiful foreign country. And I can see us visiting Holland, Italy, Ireland and Vietnam together, as a family. Just the way we were meant to all along.

Loving the sun.

Our three.

I always like to link to a song with each post, and this time I was trying to come up with one that "fit". Well I was looking through my "shazamed" songs, and found that in the past year, I shazamed this song 4 times. Did I not realize I had already heard it before? It made me laugh that I made the effort to "tag" this song so many times without realizing I had already done it a few times before. So that is why I chose this song, because I love it, apparently!

Lost In My Mind - The Head and the Heart