Happy 4th Birthday Ellie

To capture 4 years into a 4 minute video was hard for me, especially since I take sooo many pictures! And do you know what really stood out as I sorted through the hundreds of photos? This. girl. is. so. loved. Wow!

Click the link below to watch the video:

Happy 4th Birthday Ellie

Happy birthday Ellie, our beloved one!

I Have One Too

"Aren't you a pretty girl? You are just so sweet! You are a precious "special" girl, aren't you?" I started to feel my cheeks turn pink. I was nervous and even a little annoyed, thinking to myself "oh please don't tell me how happy they all are, and how they all love to dance." Ugh.

I was at Target with Ellie doing some shopping and was in line checking out. I could tell this woman, who was most likely in her 70's had noticed that Ellie has Down syndrome. I feel bad now that I assumed that she was going that route- the generalized "they are all happy" route, but I hear it practically every time I take my girl out in public. I smiled at the woman and started heading out the door and she quickly yells... "I have one too, my daughter!" I turned around and said "oh that's awesome!" and walked to my car, but I wanted to run back and ask her all about her daughter. Unfortunately my nerves got the best of me. But then at my next stop that day, I got that chance.

 
Ellie and I were strolling along the granola bar section at Costco and I was stopped by a couple who were probably in their late 60's. They couldn't keep their eyes off Ellie and were asking me all about her. She was doing her usual double-handed giant wave and "smizing" (smiling with her eyes) and they were loving it. Finally the woman says "we also have a special angel" to which I asked "oh, how old is she?" They went on to explain that her name was Andrea, and she had passed away when she was 9 years old. She had multiple health issues in her short life. My heart sank. The man grabbed his wallet, and pulled out a torn and faded school picture. She was beautiful with her brown hair falling down around her pretty slanted eyes. He handed me the picture and I showed Ellie, she immediately gave the photo a kiss. I had tears in my eyes as they proudly talked about their daughter. She would be 35 if she were still here, the same age as me. I was so grateful for that couple who shared their gorgeous Andrea with me that day. 

As I was checking out I couldn't stop thinking about that couple and their girl. I was turning to leave and my new friend came up behind me "can we exchange numbers?" she asked. I was so excited. "Yes!" I gave her my info and she gave me hers. She has a friend who has a daughter in her 20's with Down syndrome who lives downtown Portland, takes the Max to work and is in Zumba class. She is independent and doing awesome. She wants to introduce me to this gal's mother, who she said was such an advocate for her daughter who is doing so well. I hope I see this woman again someday. She really made my day and I honestly think I was meant to meet her.

I can't quite put my finger on what the "thing" is that happens when I meet other families who have been touched by Down syndrome, but it's amazing to me. It's like a secret club, a connection, a feeling of knowing, and it's beyond just having something in common. My family feels it, and even my friends too. Even the connection I have with the moms I've met online is hard to put into words. They are from all walks of life, and across the globe. We have spent countless hours sharing advice, worries, and triumphs. I haven't met them in person yet I feel a bond to these ladies. I have met families in real life and can't help but feel like there is something more. When Ellie was around 6 months old, I read a very interesting book and this paragraph gave me goose bumps:

"When I spoke with parents of handicapped children, all commented on the extraordinary people they met as a result of their children's handicaps - people they felt they already knew. In all likelihood, they did. There is often a special bond that goes well beyond the commonality of having handicapped children."

I don't know if I'll ever unlock the mystery to this connection I feel to these families, so I'm just going to go with it. I'm going to count my blessings and just be grateful every single day. I know that I will continue to meet new people who are on the same journey as me. They will be just beginning, or will be more seasoned pros offering invaluable advice. I look forward to talking to new moms and to be able tell them "it will be OK, I promise", just like others told me.

This week's song is one that I used to love when Jesse and I started dating over 10 years ago. It's funny how the lyrics to a song can evolve as your life changes, this one has taken on a new meaning for me. xoxo

Wave on Wave - Pat Green

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

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

They Are All So Happy

I have an announcement. Ellie, my sweet precious Ellie, is NOT always happy. She just isn't. In the 7 months that she's been on this earth, she has been everything. Happy, sad, frustrated, excited, curious, mad, stubborn, the list could go on. Name an emotion and she's probably experienced it. 

Pre-meltdown phase

Let the drama begin!

Will looks around like someone is going to help him!

Seriously mom, HELP ME! (says Will)

When I tell people my daughter has Down syndrome I almost always hear "oh, they are all so happy", or "they are all so sweet". I am trying to figure this phenomenon out because so far, Ellie is a lot like her big brothers. She spits up like them (rrr!), she giggles like them, she smirks like them, she cries like them. When people refer to her as "they" it feels like she's part of a whole different species, do you get what I'm saying?

There is a preconceived notion, myth, or stereotype about people with Down syndrome that "they" are always happy, or "they" are always sweet. Well Ellie wants me to tell you this.. "she" is just herself. It's just like saying "all gingers have no souls" when we know the truth, only some gingers have no souls. Hehe. 

So that is my PSA for the day. People with Down syndrome are each unique individuals just like you and I. They laugh, they cry, and sometimes, damn it, they have throw-down diva fits like it's their job!! 

My song of choice for this blog post is "You are so Beautiful" by Joe Cocker. I love this song, and it makes me think of our Ellie girl. BUT I also love that my dad once arrested Joe Cocker in Cali back in the early 70's. Famous family story right there! 

You Are So Beautiful - Joe Cocker

Dreams Really Do Come True

6 months!

I can't believe our little Ellie is already 6 months old. In all honesty, every day goes by faster than the one before it. It's crazy to me.  She's starting to give us hugs and kisses, when I first realized she was doing it intentionally it made me cry (surprise, surprise.) We have only heard her giggle twice so far, and she's sitting up pretty good (with support of course.)  She's also eating baby food like a champ.  So far her favorite is apple sauce.

Eating lunch like a big girl.

Her personality is awesome.  She is very laid back and loves to give snuggles. She smiles more and more each day. She's also been sleeping through the night since 3 weeks old. Last weekend I woke up to the sound of the lawn mower outside.  I looked over and Jesse wasn't in bed, Ellie was fast asleep next to me in her bassinet.  I got up and Luke was still asleep too.  I checked the time and it was 9:45.  What baby sleeps in until 9:45? Or even a 4 year old for that matter?  I made my way outside and Jesse and Will were out mowing.  They said they got bored waiting for us to wake up :-P She is such a fun baby and loves to sleep like her mama.

When I think back to how Jesse and I both had dreams about Ellie before she was here, I still get goose bumps.  I recently found an old email I had written to a friend.  I was discussing having two children and how Jesse and I didn't want to "risk it" by having another baby.  Here's an excerpt from that email:

"I always felt like I'd have a daughter, and my husband feels content and grateful for our two boys, he says he doesn't want to risk anything again. We actually both had dreams while I was pregnant with my youngest that we had babies with down syndrome. When they thought Luke might have it, my husbands face turned white. Later I confessed my dream to him, and he said he had the same dream! It was all too weird. When we found out Luke was OK it was such a relief.  I think that's still in the back of his mind." 

It boggles my mind that Jesse and I both had premonitions about her.  We were being prepared for her arrival without even realizing it. My mom and dad always said that our dreams represent "a fear or a desire."  When I told mom about my dream she reassured me "oh honey, it's just a fear" and she told me I needed to stop worrying about it.  Well I didn't realize it at the time, but it turned out that my dream was a desire, not a fear. I can't imagine my life without Ellie in it. I'm so grateful for her. I'm so glad our dreams came true.

I love this picture for so many reasons.  It shows off some of Ellie's "Down syndrome markers" so I thought I'd point them out: brushfield spots in her eyes, flattened nose bridge, upward slanted eyes, her single palmar crease across her hand, small low set ears... to me, it's just Ellie and I think she's beautiful. :) 

This month Ellie has her big appointment at OHSU's Down Syndrome Clinic, her 6 month well-baby visit, and an appointment with the eye doctor.  I will do a blog post to update everyone on how she's doing. I have wondered how well she can hear, see, and if her thyroid is functioning. I'm so curious to see what the panel of specialists at the DS Clinic will tell me.  It is 4 hours long, so I'm sure we will get something worthwhile from the appointment.  My fingers are crossed all goes well.

This is Ellie's old man impression.. "where's my teef, sonny?"

Here are a few more pictures of our smiley 6 month old. She had a great 4th of July with everyone. She was held the whole time and slept through the loud booms of the fireworks show. I was a slacker and didn't take any pictures of our big party this year... darn it. 

4th of July - Shooter Jennings

Ellie and her big brothers

This is one of her new smiles and it cracks me up!

Being silly for the camera! I'm addicted to my collage app on my phone (obviously)!!