Monday, January 4, 2016

Three. Tres. Ba. Trois. My Baby!

Three! What a magical but not too strange trip it has been! I can't believe our little girl is three today. It's been a while so I thought it was the perfect time for a blog update. 

I haven't been good about blogging lately and I'll try to explain why. When I started this blogging journey I saw it as a virtual baby book; a great way to keep Ellie's milestones in one place, to have a place to look back at how she's growing through pictures, and to keep friends and family updated. But in all honesty the online blogging world is tough. Her info is out there for the world to see. There's a lot of talk about sharing our children's stories, because her story is HER story, it's not my story. Is it fair to Ellie? Will she look back and want to slap me? 

So in other words, I started second guessing what I was sharing. I don't ever want to do Ellie a disservice by sharing our family's experiences. But I also still feel that sharing is important for those newly on this journey, our life is pretty normal (normal? like a setting on a washing machine?) No seriously, our life is great and we have a kid with Down syndrome.  So with that out of the way, I wanted to do a little recap of the past year now that my baby girl is three. 

2015 was SO FUN and SO BUSY. And Ellie's birthday is TODAY! 

Ellie had an epic year. I can't imagine that 2016 could top it. She was in the paper a few times, and even on the news! She was also in Times Square on the big screen, TWICE! She's reading like a champ!! She is even starting preschool in a month! I'll recap her 2015 in pictures, because that is how I roll (and I love going back and looking at them as the years quickly pass by) :)

My last post was my pissed off letter to the editor, and the one before that was the amazing Down Syndrome convention. So I'll rewind to summer. Let's start there.

Our 4th of July party was the best one ever, there were lots of people and fun was had by all.  I also got to meet my friend Jisun for the first time. We met online in the original  Rockin' Moms group. She stayed the night at our house with her family in a tent! Yes it was that kind of party! She has a blog called kimchilatkes. She is a very gifted writer, if you haven't already you really should check her out. She's also now an Oregonian, woo hooo! Ellie and Caj are so cute together. I'll talk about them more later. 

Every year our family gets together and we stay at Sun River. It is SO FUN, so relaxing, and just wonderful. Jesse's sis and family live in Vietnam so we always love to have them home. The cousins act like no time has passed. We look forward to this getaway every single year. 

Our besties from Texas came and stayed with us too, it was such a fun few weeks!! I didn't know that I wanted a Sister Wife until Kelly came and stayed with me. She would have dinner ready when I got home from work, and laundry done as well. Our house never looked so good. Kel, when are you coming back again?? Ah we love you guys so much, and miss you terribly!

We tried to get as much time on the boat as possible. Ellie LOVES it. We are looking at getting her and Luke into swim lessons before summer so they are more confident in the water. This is my favorite part of summer.

We also go on an annual beach trip with my side of the family. My brother and sis-in-law came from Texas and my niece Presley stayed for 2 weeks. It was so wonderful having them home!! The boys get along so good with their cousin Pres. The family genetics are almost creepy sometimes! They are all so much alike, and my niece is my mini-me!

We also spent a lot of time with my BFF Jos and her family. We are so lucky to have them in our lives. 

September came, and so did our annual DSNO Buddy Walk! Ellie's team raised almost 2K- we are beyond grateful. We also had our biggest group yet!

Another event in September is the National Down Syndrome Society Buddy Walk. They have a jumbo-tron in Times Square that plays a video showcasing people with Down syndrome. I've entered Ellie's picture every year since she was born. She's never made it in until this year. To me this was the "big one"... New York, baby, where my daddy was born. Oh he would've loved to have seen her in Times Square! And you know what? Somehow Ellie made it in twice this year. The paper even did a little story about it. She was in once with her buddy Caj (mentioned above) and again with her Great Grandma Margaret. Our sweet Grandma passed away in October. She got to see the photo of her and her Great Granddaughter on the big screen. She and Ellie had a special bond that's for sure. We sure miss her.

Another fun event in September was my "Rockin' Mom" get together. My house was full of beautiful babies and big kids too. Watching the friendships develop before my eyes was too much. There's something to this little Ds family I belong to, it's hard to put into words. But what I do know is that I'm grateful for each and every one of my Rockin' Moms, near and far.

October! October is my handsome hubby's b-day, as well as Down Syndrome Awareness Month! I warned my Facebook friends that I would be annoying for the whole month of October. But what I found was that my friends are amazing. They actually shared my photos of Ellie and are spreading awareness (acceptance) too. Here are a couple of photos I shared in the month of October:

So let's talk about Ellie's modeling for a minute. This whole thing was CRAZY to Jess and I. I'll try to explain it all as quickly as possible. Ellie was signed to Puddletown Talent in March of 2015. She had her first modeling gig in August for Hooray Haroo (seriously adorable clothing, made in Portland, OR!).. the Statesman Journal did an article about her modeling job. They had told me the article would be in the Sunday paper. I had my sweet mama-in-law and brother John running around to find the paper for me, to see if she was in it! She wasn't and I figured maybe they decided not to run the story. As Jesse said "it was only one ad she was in- what's the big deal?!"

The next morning I woke up early and was waiting for my coffee to brew. I jumped on Facebook to check in on my friends. My friend Lisa (in TEXAS) yes we love our Texas peeps... messaged me saying that she saw Ellie on her news-feed in USA Today. Wait, WHAT!?!?! I'm pretty sure I ran in and woke Jesse up to tell him. 

I went in to work like any other day, and around 9am my mama-in-law sent me a picture, our girl on the cover of the Statesman Journal. Then around 10am Ellie's agent (that feels so funny to say) texted me and said that Channel 8 wants to interview us. WHAT?!?!? So I called Jess and he said "Cool, you should do it." So I talked to my boss, took PTO, and rushed home. I had no time to clean my house. My amazing mama-in-law came over to help me hide clutter and fake like my house was clean. It went really good and Ellie was a total ham for the camera. So then The Mighty posted an article about Ellie. Then I got a call from a sweet reporter from Upworthy. She loved Ellie's story and wanted to do an article. She said "we only have 8 million followers on Facebook" Oh my gosh! I couldn't believe all of this was happening.


So since that one crazy modeling job went viral, Ellie has had two more modeling jobs. One for Fred Meyer (thank you to her stage Grammee for taking her!) and one for Matilda Jane. The Fred Meyer ad is supposed to be out in February and I'm not sure when the Matilda Jane photos will be live. It's been a whirlwind and so much fun. The best part for me is talking to other parents about Changing the Face of Beauty. It's an amazing and important campaign and is really changing the way people view those who are differently-abled. I'm so grateful. So here's my advice to parents: if your child loves the camera and is comfortable having their photo taken, get that kid an agent! Contact your local agencies with your child's photos and explain CTFOB's mission. It's really an amazing thing.

The Statesman Journal also did a follow-up on Ellie that you can read about here. It sums up all the craziness in a nice neat package, much more eloquently than I could!

An update on our girl as of today. Ellie is reading like crazy, she loves her flashcards and her books. Jesse and I did a count the other night and she has 130 sight words. It's so amazing! She is just starting to take more and more steps and we are really proud of her. She has a new Minnie Mouse backpack to start school in February! Health-wise she is doing awesome with the occasional sniffle and she seems to be growing out of her croup-there-it-is problems! She is on meds for hypothyroid and I also give her a handful of supplements (Nutrivene, zinc, folinic acid, and fish oil) which are all approved through her Pediatrician and Naturopath. We are lucky that we have Dr. Peirson local to us, she has helped Ellie SO much! She has her 3 year check-up this month at her Ped and the DS Clinic at OHSU

Lastly are some more recent photos from Thanksgiving and Christmas. Mostly Ellie doing her signature hard hugs that everyone looks forward to! Overall 2015 was amazing and fun and I don't know where the years have gone. Our baby is a big girl now and it happened in the blink of an eye! We love you Ellie Lehne, Happy birthday sweet pea!

For this post's song we are sharing Ellie's current favorite jam (besides Let it Go, of course)...

Sunday, January 3, 2016

The Parent's Guide To Down Syndrome: Book Review Time!

Hey everybody, guess what time it is? It's book review time!! 

Please read on for my very first book review of The Parent's Guide to Down Syndrome by Jen Jacob and Mardra Sikora

Full disclosure: I received a free copy of the book and offered to share my thoughts on my little ole' blog. 

This book is AWESOME!

I would like to preface this post with a little trip down memory lane. On the day Ellie was born it was the same day the words "Down syndrome" entered our lives. My previous knowledge of Down syndrome was shaky at best, and I only knew of the character Corky from one of my favorite shows growing up "Life Goes On". I had never really known anyone with Down syndrome before and I realized that day that I had a lot to learn. And that realization felt like a ton of bricks to be honest.

On day two of Ellie's life, the Geneticist came to talk with us about Down syndrome, and with him he brought a list longer than my arm of the dreaded "potential health issues". The hospital also gave us a book (that shall remain nameless) that was filled to the rim with the same potential issues- from delays, sight issues, hearing issues, heart issues, gut issues, thyroid issues, issues, issues, issues! I didn't look at the book that day. As I gazed at my sweet bundle wrapped in pink I didn't feel comfortable thinking of her as a list of "what if's". She was my beautiful baby girl and I craved real life information. I needed to read stories about love and hope.

Once I settled in at home I went online and ordered a bunch of books for myself, all memoirs about Ds; A Good and Perfect Gift, Bloom, and Expecting Adam just to name a few. I read personal blogs and connected with other moms on the internet. That original book I received from the hospital is still tucked away on the bookshelf, collecting dust three years later.

So this leads me to my first ever book review. Thank you to my friend Jen Jacob (co-founder of DSDN) who mailed me a copy of the book so I could read it and share my thoughts. When Jen told me she was writing a book with Mardra Sikora I was giddy. Mardra is an amazing writer/advocate, and mom of Marcus who is a young adult with Down syndrome. Marcus is the author of an awesome kid's book called Black Day: The Monster Rock Band. These two gals are famous in the Ds world, and writing a book together? Are you kidding me? I knew immediately it would be a game changer.

The Parent's Guide to Down Syndrome covers it all. It is chock full of resources from front to back. It covers the prenatal through adulthood stages of raising a child with Down syndrome.  Every single topic within the book is relevant and important. But here's my favorite part: what sets this book apart from every other book I've read about Down syndrome is that it includes hope and love. Within each topic there are real life accounts of living with Down syndrome. The commentary is from parents as well as people living with Down syndrome. THIS. This is exactly what I needed in those early days. THIS is what I was craving, to hear from the people who were living it. The people who were there to tell me "welcome to the club" and "your going to be OK". And now three years in, it is still what I need. I will be referencing this book for the next 18+ years I'm sure of it.

One other huge plus for me was the neutral way in which the information was presented. The world of Down syndrome can be controversial in the number of avenues a parent can take, whether it's neurodevelopmental therapy, vitamin therapy, PT/OT/EI/ST, schooling options, inclusion versus seclusion, and the list goes on. The information is presented professionally and leaves the reader feeling empowered with the resources needed to make decisions that work for their family. 

If you have a child with Down syndrome, or are expecting a child with Down syndrome I highly recommend you grab a copy of this book for yourself. This will now be my go-to gift for new families I encounter who are just starting out on this journey. Thank you to Jen and Mardra for creating a resource for families for years to come. I wish I could go back three years ago and read this book, to know that I am not alone and never will be. What an amazing feeling that is.