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

Our First Down Syndrome Event

The Down Syndrome Network of Oregon puts on a yearly event at Oaks Park for families who love someone with Down Syndrome. We haven't done anything "Down syndrome" related yet. I have met with other mama's on my own, but Jesse hasn't. I was nervous but excited and my boys were thrilled. When I told Jesse that I couldn't wait to go he hesitantly said "but aren't we already doing the Buddy Walk?" I was able to coax him into going by telling him that we will arrive late and leave early. Well guess who was the last to leave? We were just living up to our title of the "family of long goodbyes".

When we arrived, we were met by a group of families all with a common bond. The feeling of love that emanated from the group was powerful. We met children with Down syndrome that were around Ellie's age up to a senior in high school. I even had the opportunity to meet a beautiful lady who is 20 weeks pregnant with a baby girl with Down syndrome. I was so amazed by her and her husband and their courage to come out and embrace the Ds community. I overheard Jesse talking to the dad and offering his own advice. It was heart warming to hear him talk about Ellie in such a positive and uplifting way. I think we were meant to meet this couple that night. I think it was good for Jesse to be on the advice-giving end too, a new role for him.

The DSNO had a huge spread of food including desserts, drinks, t-shirts (which I wish I would have grabbed one!) and posters for us to put up at work for the Buddy Walk. There were a lot of teenage volunteers there helping all the kids as "ride buddies".  Many of these kids have a sibling with Down syndrome and were just awesome kids. It was very well organized and had such a welcoming vibe.

We spent the evening with our new friends, and mostly with my self-proclaimed new BFF (famous Iris's mom) see previous post about Iris, she is the coolest kid ever! Scroll to the center of that post and watch her dancing to "Thrift Shop" if you haven't yet. The boys and I have watched it at least 20 times! Will and Luke rode on as many rides as they could squeeze in with Eric their new buddy (famous Iris's big bro) and they are already planning the next time they can see Eric. I am looking forward to play dates with these moms and kids, I can already sense that lifelong friendships are being formed because of Down syndrome. I am continually telling myself I can't believe how this is all turning out. How scared I once was, and how now I can't imagine my life any other way. My heart is full.

Ellie and Iris smoochin!

Luke, Eric and Will

Speaking of the Buddy Walk and my heart being full, we have formed a team called Team Ells Bells. I am so excited to have our friends and family come out and walk with us to honor Ellie and others with Down syndrome! We are raising money for the DSNO and I had to choose a goal amount. I put $1000 down, unsure if that was too big of a goal but I thought it sounded good.  I posted Ellie's page on my Facebook and in 6 days we surpassed our goal. I am so grateful and humbled at the outpouring of love and support! I can't even explain how much this means to us. I contacted our PR group at my work and they added the DSNO to their list of charities, they will match employees donations dollar for dollar! Amazing!  Many of my co-workers, even those thousands of miles away have donated to Ellie's team. Our friends are surprising us left and right with their generous contributions. This money helps with programs, scholarships, and events like the Oaks Park family night! 

Here is Ellie's team page if you want to check it out: 

http://dsno.org/teams/team-ells-bells/

I can't wait to tell Ellie about her first Buddy Walk and how much her friends and family love her. Although, when seeing that scrunchy faced soulful grin, I think she already knows.

Love to you all.

Happy.

My song choice for this post is Somewhere Over the Rainbow, What a Wonderful World by Iz. This is a song we played at our wedding and is one of my all time faves. At the Oaks Park event, the DSNO founder's daughter Megan (who is 15 and has Down syndrome and gorgeous red hair) signed the lyrics to this song as her mama sang it. I was in tears, it was beautiful and the perfect end to the evening.

Somewhere Over the Rainbow, What a Wonderful World - IZ

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

Ellie's Big 6 Month Ds Clinic Appointment Update

Ellie had her much anticipated 6 month appointment at the Down Syndrome Clinic at OHSU - Doernbecher. It went AMAZINGLY WELL.  I am so grateful to have the Ds Clinic so close to our home. The appointment was 4 hours long and worth every minute. I was still jet lagged from coming back from Ireland the day before so my note-taking was not very good (OK I didn't take any notes!) They reassured me that they would mail me all of the recommendations from each specialist from the day (sweet!) My mom came with me and had great questions to ask, and was cracking everyone up along the way.

Show me what you got, docs! Let's do this thang!

The first person we met with was the Audiologist.  I had wondered if Ellie's hearing was OK.  She passed her newborn screening but I know that fluid can easily build up in her ears so I was anxious to know how she was doing.  She passed the hearing tests with flying colors, and it's recommended to have her hearing checked every 6 months.  I will be able to do this through Willamette ESD. The Audiologist was so nice and personable.  She even knew one of the Audiologists from Willamette ESD so I was given inside scoop on who to ask for when Ellie turns 1. She also mentioned that if Ellie gets sick with a cold or ear infection that the fluid can quickly build up, so to keep an eye on it and retest if necessary.

The next person we met with was the Speech-Language Pathologist.  She had some great pointers on engaging Ellie with mimicking sounds and facial expressions, and even having her copy us with sticking our tongues out. Jesse and Ellie do this ALL THE TIME and we always tell him to quit teaching her that- knowing that tongue thrust is already an issue we will face in the coming years. Well we were schooled on that, because the gal giving us all the tips reassured us that all babies stick their tongues out!!  She explained that when Ellie is bigger, we will work with her on keeping her mouth closed. If she keeps her mouth closed, her tongue can't stick out. Point was well taken (oops) and I told Jess he was right all along! 

Daddy, they told mom that our tongue game is totally fine, mommy is so neurotic!

The next person we met with was Dr. Pinter.  Talk about an awesome doctor! I was so encouraged and uplifted after meeting with him. He has such a positive view of Down syndrome and you can tell he genuinely loves his patients. He is a Pediatric Neurologist and is very brilliant. I was able to review Ellie's brain MRI with him. I wish I could have gotten a picture, it was wild seeing into my daughter's "normal" brain! I even saw her baby teeth and they looked cute already :)  Dr. Pinter was thorough and answered all of my questions before I even pulled out my giant list. I've been working on that list for the past 6 months! He was down to earth and I felt comfortable to ask him anything. I am so lucky to have him on Ellie's team. He told me more than once how beautiful Ellie was. He gave me links to some local kids/adults with Down syndrome's YouTube videos. One that really stuck out to me was of a little local girl with Ds dancing at her school talent show. Her name is Iris, she is the CUTEST LITTLE GIRL EVER! After some digging (OK, Facebook stalking) I found her mama. She gave me permission to post the video of her.  She is a 2nd grader and has some awesome moves.  Here's the link:

Iris - "Thrift Shop"

And in the usual Down syndrome "club" fashion, as I was writing back and forth to her mom I realized that the video Ellie was in called "I CAN" also had Iris in it! Iris was one of the kids that we noticed because she was so stinking adorable and her brother had a mo-hawk just like Will. We all thought those two reminded us of Will and Ellie someday. What a small world! I really am looking forward to meeting Iris and her mom soon. 

Dr. Pinter also provided a very easy to read guide for new and expectant parents from the The National Down Syndrome Society called  "A Promising Future Together".  I left my appointment with him with a list of what we talked about and list of Down Syndrome Health Care Guidelines Record Sheet. It lists everything to watch for over the next 12 years and is easy to follow. I felt much less overwhelmed by the medical "stuff" after meeting with him.

Lastly we met with Occupational Therapy and Physical Therapy.  There were four ladies and they sat around Ellie on a play mat. They gave me great ideas on keeping her arms forward (she likes to pull them back) and were encouraging about how she was doing so far. She was loving the attention, it was so cute! Our next milestone is getting her to sit unsupported and to start working on crawling.  She is also starting to lean to the left so we are also working on that so she doesn't develop torticollis. 

Oh, a quick update on Ellie's stats (this is her virtual baby book so I need to make sure to write this down!)  
Height: 27" (80th percentile)
Weight: 14lbs 9oz (70th percentile)
Dr. Pinter said she is "long and lean" and is happy with her growth.  The percentiles are based on the Down syndrome growth chart. 

Other miscellaneous things I learned: the jumperoo is fine in moderation (I had read it was bad for baby's hips), the bumbo baby chair should also be used in moderation as it can attribute to poor posture due to the shape of the seat, thyroid issues in babies (with or without Ds) can cause cognitive delays so it's important to have the thyroid checked, and brushfield spots do NOT cause issues with sight (heard this myth too!)

I love this thing!

Overall, I would say that the Ds Clinic is well worth it. It reconfirmed everything I have read and researched so far. I also was able to ask about the spendy supplements that I keep hearing about. It was bugging me that we weren't doing it because I've read a few testimonials on how it's a "miracle".  After speaking with Dr. Pinter I feel confident that it's not worth the $300 a month for us to do them (can't afford that anyhow.) I am going to keep taking my vitamins and supplements that she gets through my milk, as well as give her vitamin D drops. I'm finding with Ellie's care, listening to the doctors but also listening to my mama gut instinct is VERY important. Everyone at the Ds Clinic loved Ellie and she was so cute showing off her skills. I look forward to our next appointment when she's 1! 

I always end each post with a song, and this time I couldn't come up with one. I asked Jess and the boys what song they thought would work. Luke wanted me to post Beyonce's "Single Ladies" but it didn't quite fit (lol) and Jesse started singing "Haaaallelujah.. Haaaaalelluuujah... Hallelujah, Hallelujah, Halleeelllluuujaaaahh!" because we were so relieved to hear how well Ellie was doing. It made me think of this song, which I love, and it doesn't really go with this post but I'm adding it anyways.

Hallelujah - Rufus Wainwright

It was a fun day mom, I got lots of attention!

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)!!

Our Anti-Pinterest Redneck Party

Ellie says "lets get this ho-down started!"

Pinterest. You dirty little time sucking, unattainable idea giving, too perfect for my life, virtual pin board. I'm mad at you, Pinterest.  I have spent hours pinning all of your wonderful ideas and have yet to try anything you have shown me. You make me feel like a bad mom, horrible party thrower and lousy cook.  I just can't live up to your expectations, so you know what? I give up. I'm giving up on you.  

OK that's a little harsh. I know I won't give it up, I love that site, and the ideas within it. I'm kind of addicted to it actually. I just know that for me, at this time in my crazy life, I just can't live up to my self-inflicted Pinterest expectations.  So this year I decided to throw an anti-Pinterest Redneck party for our boys. And I have to say, it ended up pretty awesome.

Now that I'm working full time and the mama of 3 kids, I was dreading the idea of throwing our boy's joint birthday party. I have been stretched thin time-wise and can't even keep up on my laundry. The idea of cleaning and prepping and shopping was too much for me to even think about. What theme will it be? What should I do for the favors? Do we do it in the middle of the day so we don't have to serve dinner? Heck no! As I was putting together my thoughts I asked the boys what kind of party they wanted this year.  "I want to have a guys night, only boys can come, we can hang out with dad.. drink some beers" my almost 6 year old Will tells me.  He knows he's being inappropriate but will risk getting in trouble to get a laugh out of us (and it usually works.)  "Ummmm, let's see... I want a purple and pink princess party, and only girls can come" says my almost 4 year old son Luke. OK so how do we combine princesses and a dude party? This should be interesting.

Our wonderful family friend asked if we wanted her to bring her ponies to the boy's party, and that was an easy choice (awesome!) So cowboys and Indians theme?  Maybe a farm party? Hmm. Just as I was trying to decide, Jesse came home with a craigslist purchase. He was the proud new owner of a 3-wheeled early 1960's rusty old Cushman. Our neighbor saw him driving around the property and said that we just "upped the white trash factor in our neighborhood by a point".  Ponies. White trash. A dirty house. I got it! A hillbilly party!

I ran to the dollar store and picked up billy bob teeth, squirt guns, candy, and funny glasses to give out as favors. Easy and cheap just like our party ;-) Even the pack of brown paper sacks were from the dollar store. I love that place!

We pulled out our outdoor furniture from last summer and it was dirty and needed a good scrub down. As my mom was helping me wipe down chairs she said "good enough, this is a hillbilly party, remember?" Ahh, this theme is really working for me.  I barely cleaned our house and normally I'm panicked with the thought of people seeing my clutter and dirty floors. But this time it was different. I didn't have the time to worry about it, and I finally allowed myself to let it be. And it felt GOOOOD. 

I shopped the night before the party at Costco with Will in tow as Jess was busy outside doing yard clean-up.  We picked up the burgers, dogs, fixins, a packaged salad that just had to be thrown together, some frozen corn, bowl of fruit already cut up, and lots of beverages.  My mom made her amazing bootlegger beans and tater salad and my mom-in-law made her world famous cookies. Which I must say some sneaky older brothers stole on their way out the door (someone saw them feverishly stuffing snickerdoodles into gallon-sized ziplocks right before they left!) My awesome sis-in-law made the yummy cupcakes. We also had hillbilly inspired cocktails for the big kids at the party.  All in all, it was easy peasy.  In all the years of throwing parties at our house, it was the first time I ever was able to sit down and relax and talk to everyone. I would have to say it was my most favorite party yet, and was the least amount of work! I love that having three kids is in some crazy way making my life a lot easier. Is that even possible? It's interesting how life works itself out, isn't it?

So next year I am going to go with some sort of party theme that can be translated into easy again.  My mom suggested a camping theme. Tents, s'mores, camp fire, dirt... yep! Totally doing it!

And I also need to give a shout out to my family and friends who DO throw Pinterest-worthy parties. I am the proud friend, sister, daughter-in-law, and daughter who gets to be inspired by those in my life who are so amazing.  I love the creativity and fun that goes into the parties they throw, and by me being anti-Pinterest I'm in no way saying I don't like what they do. I LOVE what they do, and I often tell them they should start blogs or websites showing off their amazing ideas. I totally mean it! They are so stinking good at at it! I am so glad I have them share their party tips and they are always there to offer ways to make my parties great but in a way that works for our lifestyle. 

Lastly, I wanted to talk about Will's #1 most favorite singer in the world, Jason Aldean. He has been listening to him since he was 2 and pretty much knows every one of his songs by heart.  He's coming in September so we jumped on the chance to take Will and Luke to their first concert. It's going to be just the four of us. One of the grandmas will be watching Ellie for us that night :)  They are super excited, especially since it's a school night (what rebels!)  I have to share Will's most favorite Jason Aldean song. When we play it in our car I always look in the rear view  mirror at him, I can literally see his heart melting when it comes on. It's so cute and he knows it word for word. We sing it together at night before bed too.  And sometimes when I'm alone in my car and I hear it, it makes me squirt a tear or three.

Heaven - Jason Aldean

And below are just a bunch of photos of some of my favorite faces from the party. :-)