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 "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

Who I am - 3/21 World Down Syndrome Day

Today is 3/21, World Down Syndrome Day. In honor of this special day I wanted to share an amazing video by the IDSC (International Down Syndrome Coalition) called "Who I am" and I would also love to share with the world who our Ellie is!

International Down Syndrome Coalition - World Down Syndrome Day 2013

Ellie Lehne...

I am snuggly, I am sweet, I am cute, I am petite!

I am the apple of my daddy's eye-

I am an adored niece (with 7 uncles and 4 aunts!)

I am the most favorite baby cousin ever-

I am a pretty princess-

I am a very loved baby sister to two awesome big brothers-

I'm a movie star! Yeah that's right!

I'm an excellent sleeper!

I am my mama's world-

I am a blessing to my family-

I am a lucky granddaughter and great granddaughter-

I am who I am, I am Ellie!

Hall of Fame - The Script ft. will.i.am

My 2 Month Old Secret

I feel really guilty and feel like I need to write about when I told my brother Danny about Ellie's Down syndrome. She was 2 months old when I finally told him (as I hang my head in shame.) 

I have 6 brothers, 5 real and one adopted. My big bro Danny (the second oldest boy) is special (there's no better way to put it!)  When he was born my mom said he was like any other baby and was a happy boy.  He also had a patent vitelline duct, which means his little belly button was herniated. This was in the mid 1960's and his doc told my mom it was no big deal when she voiced her concerns over the phone.  When Danny's pediatrician finally saw him he was shocked over the size of the hernia and they scheduled surgery immediately.  He was 6 weeks old.  When my mom and dad brought Danny home they said he was a different baby. According to my mom, he was lethargic and would just lay there.. if she would lay him on his tummy he would lay face down and not move. Heart breaking. Her gut instinct told her it was from too much anesthesia. 

Could they be any cuter? My 5 brothers, Danny is in the upper right.

My brother Danny and I, 1978

Danny and I in 1995

As Danny grew up he was delayed, but the docs never really knew the reason behind his delays. They just told my parents he was slow.  He is now a 47 year old stud, who has lived in the same apartment for 25 years. I told him he's the best tenant that has ever lived! He's also a devout catholic and in the Knights of Columbus. He loves to say he "has to pray hard to get this family to heaven".  He's awesome and he's our angel. He also proudly tells everyone that he is "Rainman" because he literally can tell you any sort of sports history you ask him about... who won the Superbowl in 1977?  He would tell you not only who played, who won, but also the scores. Oh and yes I chose 1977 because that is one of the years the Raiders won. If you ever meet Danny ask him about the Raiders. He is the most loyal fan I've ever known! Just don't ever say "Raiders suck", as my brothers can tell you, Danny has a punch called the "hollow back" and it can knock your butt down in 2.2 seconds. 

My brother's fake band pic... love this one.

Where am I going with all of this? Well when Ellie was born we relied on my brother Matt, my mom and in-laws and text messages to get the news out to our friends and family.  The task of telling Danny about Ellie weighed heavy on my heart. Danny is a worrier, big time.  I had heard him talk about people with Down syndrome, one of his friends has a daughter with DS who is now 9. She battled leukemia.  Every time he mentioned her he says she's the "girl with Down Syndrome and leukemia". I just knew he was going to worry about Ellie.  I worried about him only thinking of her having Down syndrome and not thinking of her as his niece.  She makes him an uncle for the 7th time by the way, which is his favorite number. :)

I kept mustering up the courage to tell him and every time I would call it would be a busy signal (he's a big chatter on the phone!) So finally one day he called me while I was laying on the couch snuggling Ellie. She had just turned 2 months old. I said "hey brother I have to tell you something about Ellie that I haven't told you yet" and he said "What, T?" and I told him. He said "Awww!!" but not in a sad way. Imagine it being said with excitement.  "She does?!?" he proclaimed. I was so nervous. He then said "She's a gift from God Tiff! She's going to be awesome!" Yep and then the tears started. "Darn it Danny!" I said... "there I go crying again!"

So there you have it. Uncle Danny is fine with Ellie's diagnosis. Shame on me for worrying about it, I could have used his love and support in the beginning but I was too scared to tell him. 

First time Uncle Danny met Ellie.

Oh they will kill me for putting this picture up! 3 of the 5 were actually in the Army. 

Almost the whole crew, missing brother Joey from Texas.

Daniel My Brother - Elton John

Feeling Good Again: Ellie's Health Update

Ellie was born with a heart and neck issue, and for the past 2 months I feel like I've been holding my breath hoping she's OK. Well this past week she had an MRI and cardiologist appt, and I'm happy to report that she's doing amazing (woooo hoooooo!!)

A little bit about her neck.. While Ellie was growing inside my belly, she was laying in an awkward position, with her head touching her back (see pic below.) At the time, my OB said it could be a neurological issue, an osteo issue (like she would eventually need a helmet) or it could be nothing at all. When I googled "hyperextended neck" the first thing that came up was a baby with Down syndrome. Even my friend from work found this info online and asked me if it could be DS. I immediately brushed it off since all of my prenatal testing never suggested DS (surprise mom!!)  Jesse says she's like an owl, which is fitting since that's the theme in her room :-P

The crazy position she likes to sleep in! I had to send this to her pediatrician to show him what I was talking about.

She has a really floppy head and it's taking her longer for her to get her neck strength and to hold her head up. She had an MRI last Wednesday to look at her neck and brain stem.  Her pediatrician mentioned hydrocephalus, talk about making this mommy worry! Her MRI results are in and her neck looks FINE! We are starting physical therapy this week to help with this, what a relief.

Then today she had an appointment with the cardiologist. He's one of the best around, so I felt really confident in him from the beginning. He's the same doc who detected her issues in utero.  So today they did an ultrasound of her heart... the issue has resolved itself, the PDA closed on it's own! There is "no follow-up needed" ah, we are so grateful!!

All dressed up to go to the big city for her heart appointment.

I was feeling a little "heavy" today, trying to not worry about Ellie's heart. What if she needs surgery...? I could feel my emotions in my throat and was dreading any bad news, like I was going to lose it any second. The number of appointments she has is already overwhelming. I just hope that now that her heart and her neck are "OK" that I can focus on loving my baby. I also got this in my email today and found it quite reassuring (it's from the Secret):

"When a big change occurs in your life it forces you to change direction. Sometimes the new path may not be easy, but you can be absolutely certain that there is magnificence for you on the new path. You can be absolutely certain that the new path contains things that you could not have experienced otherwise.

When we look back at a negative event that occurred in the past, we often see how in fact it transformed our life. We see how that event directed us toward a life that we would not change for anything."

Hi guys! 

I'm by no means saying Ellie's birth is a "negative event" but her diagnosis is definitely a new path that our life is on. I feel like I can breathe a little easier knowing that her lil' ticker is working and that her neck will get better with time. ❤

Robert Earl Keen - Feeling Good Again

Our Little Tulip

The day after Ellie was born I read a poem by Emily Perl Kingsley called "Welcome to Holland" about what it's like to raise a child with a disability. At that moment it was perfect for me. It talked about the unexpected journey I was about to take. I liked how it explained this new adventure and I sent it to our family and close friends to help explain how Jess and I felt about Ellie.

You can read it here:

http://www.our-kids.org/Archives/Holland.html

My best friend sent me a bouquet of tulips after Ellie was born and the card said "Ellie is the most beautiful tulip in Holland" and I absolutely loved it. I loved it so much I even picked a tulip stamp for my baby name necklace. It went perfectly with her big brother's disks.  My family was complete. 



As time has gone on, I have re-read the Holland story many times. I have to say that I still think it's beautiful but I also don't agree with it 100%. She says that it was a "very very significant loss". But I no longer feel this way. I did for about 2 days after Ellie was born. I grieved for the loss of the daughter I thought I was going to have. But the little girl I'm holding in my arms is who she was meant to be, from the moment she was conceived. She is the same baby that was kicking inside my tummy and who I would sing to while driving to and from work every day. She is perfect to me and I don't see the dream of what could have been as a sad thing. I think this is the trip Jesse and I were meant to take- we were meant to go to Holland all along!

Daughter - Loudon Wainwright III