7 Things on 3/21 - World Down Syndrome Day

We love our neighborhood!

This is our second year celebrating 3/21, World Down Syndrome Day. Looking back at this day last year I can honestly say I didn't know much about Down syndrome. I thought it would be fun to share 7 things that I have learned in the past 14 months. We have had a crash course and some of the information is really surprising! I hope you find this information interesting too. This post is also jam packed full of photos, since it's been a while and I have a hard time picking my favorites!

Princess Ellie says... keep reading, this is some interesting stuff!

1. Bear with me, point 1 is a long one but it's very important. To commemorate World Down Syndrome Day, I am so happy to announce the launch of DSDN, the Down Syndrome Diagnosis Network.  We are a non-profit group comprised of 8 mothers from across the US who all have a child with T21. We come from varying political and religious backgrounds and we believe in a pro-information stance. Our mission is to create an unbiased family-centered discussion of Down syndrome within the medical community. 

• We encourage parents to respectfully write letters to their medical providers whether they had a poor or positive experience in receiving the diagnosis. 
• We help to connect families to birth-club type support groups on Facebook. These private groups have been my lifeline and I've made friendships that will last a lifetime. 
• We help connect families with their local Ds organizations to encourage face to face support. Sometimes just hearing the words "I understand" can mean the world. 
• We have an online book of over 80 true-life birth stories linked to our site to help parents know that they are not alone on this journey. You can find Ellie's story in the "Unique Diagnosis" section. 
• We have compiled a links section to the most current and useful Ds related sites such as Down Syndrome Pregnancy, International Down Syndrome Coalition, Down Syndrome Blogs and more.

I'm so grateful to be a part of this community and am passionate about our message. You can also find us on Facebook and like our page! 

Part of my passion in getting involved in this non-profit stems back from something I learned shortly after Ellie's birth. Did you know that 90% of babies prenatally diagnosed with Down syndrome are terminated? This means only 1 out of 10 babies like Ellie get to meet their families. I researched this number a little deeper and have found that the % may not be as high as reported. The statistic is based on women who are opting to have invasive testing (like a CVS or amnio), and it does not include the women who refuse prenatal testing. So the number may not truly be 90%, but it's still high. I think I am discovering part of the reason for this staggering percentage.

Many of the moms in my online group have shared that they were pushed to terminate by their doctors when they received their diagnosis. I've also had the opportunity to talk to pregnant women who are facing life-changing decisions. One story that I can't shake from my mind was a mother I spoke with who found out her unborn baby had T21. She was 20 weeks along. The doctors informed her that her child will never walk, never talk, and will be in a group home by puberty. He pleaded with her that was unfair to her other children to bring a child with Down syndrome into their lives. He told her it was utterly selfish of her. She was heartbroken, scared, and completely defeated. Ultimately, this mother chose termination. She had complete and total trust in her medical provider. As a mother of a child with T21 I know wholeheartedly that the information she received was not true. It is crucial that the medical community is providing unbiased and up-to-date information when discussing options with their patients. The information they are providing is life altering. This is why DSDN's mission is so important to me.

2. In keeping with the numbers theme, I was also surprised when I found out that Down syndrome occurs in 1 out of 691 live births (National Down Syndrome Society). There's a misconception that more women of "advanced maternal age" have babies with Down syndrome. It's true your odds of having a baby with Trisomy 21 go up as you age, but more babies are born to younger mamas due to the amount of women having babies in their younger years (approximately 80% of babies with Ds are born to women under 35) See the below chart that shows the odds based on age from The March of Dimes.

3. Some people with Down syndrome can drive! I was excited when I heard this because it's something I have wondered about but I had no idea who to ask. Noah's Dad did a great post highlighting 7 of these drivers. He gave me permission to link the post here, Noah's Dad - Can People with Ds Get Their Drivers License? I wonder if Ellie will get her drivers license someday? Only time will tell!

Come on dad, give me the keys already! She looks so grown up here.

4. The life expectancy for a person with Down syndrome has gone from 25 back in 1983 to 60 years old today (National Down Syndrome Society) By the time Ellie is older I am curious what this statistic will be! It's amazing the advances that have happened just in the past 30 years and I have a feeling we will look back in amazement in the next 30 years.

5. College opportunities! Did you know that there are over 250 college programs nationwide that are tailored for kids just like Ellie? How awesome is that? In the weeks after I had Ellie I reached out to the Down syndrome support group on Babycenter, and met Margaret "Gary" Bender. Her daughter Alex is AMAZING. Alex is now 20 and last year she won the bronze medal for downhill skiing in the Special Olympics in S. Korea. Today she is a freshman at the University of Cincinnati in the TAP Program. I read Gary's book From Grief to Celebration in the first month of Ellie's life and it was so encouraging and uplifting for me. It was just what I needed at the time to realize Ellie's future is so bright. Alex is such an amazing role model and I'm grateful for mothers like Gary who have paved the way for new moms like me. What a community of support! There's a great site to find college programs for special needs in your area called Think College. I'm thinking Oregon State needs a program like this.... who knows what'll be available in 17 years ;) (GO BEAVS!)

Yay for college!!

6. "Is she walking yet?" I have this photo of Ellie as my screensaver at work:

I've been asked this question at least 10 times because age 1 is the average age that most kids learn to walk. Well kids with Down syndrome have their own development chart and tend to do things a little later than typical kiddos. The average age for a child with Down syndrome to walk is actually 2. I had no idea until we had Ellie! Here's a chart that helps put the range in perspective: (from www.dsmig.org.uk/pdf/downs3.pdf)
And as I like to say, Ellie does everything on "Ellie time", and she is crawling around now and surprising us daily with the things she is learning.

7. "God only gives special kids to special parents"...Well duh, Jess and I are awesome, right? We heard this sentiment A LOT after Ellie was born. To be honest, it's not true. Surprise! We are just like any other mom and dad, and it's not a stretch to say we are actually pretty dang boring. But I do believe God knew what he was doing when he gave us Ellie- special or not! Just like he knew what he was doing when we were given Will and Luke. In other words, we are just like any other family of five and I truly believe our kids were hand picked for us. And I feel very lucky that they are ours.

Our three. And no, Luke isn't wearing hair clips it's his backwards sunglasses!

Before I end this post I also have to share this amazingly beautiful and inspirational video that the IDSC (International Down Syndrome Coalition) made for World Down Syndrome Day. It is sure to make you smile! I am honored this year to have Ellie's photo picked to be in the video! See if you can find her!! (hint: she's about midway through, 2:17 to be exact) You can watch it here:

IDSC 2014 World Down Syndrome Day Video

And lastly (I promise) I woke up this morning, on 3/21 and saw that Ellie and our story made the news. My heart is full and I am feeling so grateful. You can check out the article in the Oregonian here:

The Down Syndrome Diagnosis Network Sprouts from Moms Looking for Support

My song choice came to me during my 11 hour flight to Asia last week. I was watching the movie The Delivery Man with Vince Vaughn when I heard it. I was rummy and tired and missing my babies, and it totally made me cry (what song doesn't these days?) I had never heard it before and it really made me think of my kids, I thought it was a good fit for today's post. :)

Little hands
The world is yours
Hold it close with open arms

Little feet
With miles ahead
Take it slow, see it all, take it in

Little Hands - Inland Sky 

High fives with neighbor Dani!

So? Who is the fairest??

Having fun with big brother and Eric.

Will, Luke and Ellie with Eric and FAMOUS IRIS, and Dani! xoxo

Giving big squeezes to her friend Kate.

Having fun with Kate!

It's World Down Syndrome Day!

Hangin' with my favorite guy (I'm not kidding, this girl is smitten with her daddy!)

Thanks for reading my mom's blog, I hope you learned something new today!!

A Pictorial Recap of Ellie's First Year

What a fast, exciting, crazy, and memorable year 2013 was! Here's Ellie's first year in photos... I sure take a lot of pictures!! But it's amazing to see how she's blossomed before our eyes! Click this link to see the youtube video :)

Ellie's First Year in Pictures

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