My boys

I love watching my boys play together. It’s taken awhile, but Cody has finally accepted Eli as part of the family. Now that Eli is more mobile and can actually do things, Cody thinks he’s pretty neat. He’s become so wonderful with his little brother. He can make Eli laugh like nobody else. He now initiates taking pictures with his brother (before we’d have to bribe him to even sit next to him!). He picks activities that Eli can join in on as well (sometimes). He truly has love for him. It is such a relief. I was worried there for a bit.

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I am so thankful every day for my two boys. God blessed me by making me their mommy. Parenting is definitely challenging at times, but today I am reminded that the rewards (hugs, kisses, the random “I love you Mommy” from the backseat of the car) far outweigh anything else. ❤️

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Happy 1st ‘Heartiversary’ Eli!

Today is Eli’s ‘Heart Day’! It has been one year since Eli’s heart was repaired. One year ago we were anxiously handing our child over to doctors for open heart surgery. I can picture it like it was yesterday.

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I can also still feel the total calmness that washed over me. The voice in my head telling me it was all going to be ok. I put all my faith in God. I ‘Let Go and Let God’. I had full trust in his surgeon and his team. They were on our side. They were going to fix our boy.

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Here it is, one year later already. What a year it’s been. If his heart wasn’t repaired so successfully, who knows how (or even if) he would’ve gotten through the other setbacks he’s faced. Open heart surgery was his first of many obstacles last year. Because of it, he was able to conquer each one. I am so very thankful for this precious boy and his healthy heart.

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WHAT A DIFFERENCE A YEAR MAKES!

You’ve Got A Friend In Me

Yesterday marked one year since we got to bring our little pumpkin Eli home from the NICU. This Halloween he got to trick or treat with his best friend, his brother. Cody picked out their costumes. Buzz Lightyear and Woody. Seems fitting.

Have you ever listened to the theme song of the Toy Story trilogy, “You’ve Got a Friend In Me” by Randy Newman? It’s like it was made for Cody and Eli (aka Buzz and Woody).

Here’s the lyrics:

You’ve got a friend in me
You’ve got a friend in me
When the road looks rough ahead
And you’re miles and miles from your nice warm bed
You just remember what your old pal said
Boy you’ve got a friend in me
Yeah you’ve got a friend in me

You got troubles and I got ’em too
There isn’t anything I wouldn’t do for you
We stick together, we can see it through
‘Cause you’ve got a friend in me…

Some other folks might be a little bit smarter than I am
Bigger and stronger too
Maybe
But none of them
Will ever love you the way I do
It’s me and you boy…

And as the years go by
Our friendship will never die
You’re gonna see it’s our destiny
You’ve got a friend in me…

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Hope everybody had a safe and happy Halloween!

Video

Happy 1st Birthday Eli Michael!

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Here is a video I made to celebrate Eli’s first year. What a year it has been! Going through the countless number of pictures, I am reminded just how tough my baby boy is. He is a fighter. A warrior. My hero. I know I say this a lot, but I am truly blessed. Happy birthday to my sweet, funny, determined, inspiring little man. I am so proud to be your mommy.

Liebster Award

“You like me. You really like me”. Sally Field made that quote famous after receiving an Oscar for her role in the movie Places in the Heart. Today, I am acknowledging that at least one person, likes me. They really like me. 😄
I’ve been nominated by a fellow blogger for an award called the Liebster Award. From what I can tell, it’s really just a fun way to spread the word about small blogs that other bloggers enjoy reading. Ok, so it’s not an Oscar. I totally appreciate the fact that anyone enjoys reading my blog. It is especially gratifying when another blogger (not just my friends and family) enjoy my blog. So, thank you for this honor Crayon on the Wall!

Here are the required steps to “accepting” this award.

Step One:Thank the Liebster-winning blogger who nominated you.

Thank you again Crayon on the Wall! I think your blog is pretty awesome too!

Step Two: Post 11 facts about yourself.

1. I am a reality TV junkie. Survivor, Big Brother, The Bachelor – If it’s “non-scripted” (I use that term lightly) and trashy, we watch it.

2. I never finish my glass of milk with dinner. I always leave one or two sips (it drives my husband crazy!).

3. I am passionate in my belief that the toilet paper should be dispensed over the roll. I have been known to change it to the correct way at friends’ houses.

4. I cannot be without my iPhone for more than a few minutes. It annoys me that I am so attached to it.

5. I knew I was going to marry Chuck after our first date. I even told my mom that fact the next day. I never believed in soul mates. That date changed my mind. We were meant for each other.

6. I used to be a vegetarian. I still don’t eat beef or pork.

7. I am terrified of birds.

8. I am a grammar perfectionist. Poor grammar (spoken and written) drives me nuts! That being said, please don’t re-read this post looking for mistakes to point out. 😉

9. I really want a horse. But, the homeowners association frowns upon horses in the backyard. I once tamed a blind horse that was terrified of people. Her name was Helen. My voice became the only one she responded to. It is still one of my greatest accomplishments.

10. I have seen Kid Rock in concert 6 (soon to be 7!) times. That may surprise those of you that don’t “know” me.

11. I love my children more than anything else in this world. I once dreamed of being a veterinarian, I ended up being a salesperson. I now realize I was meant to be a mommy.

Step Three: Answer the 11 questions presented by your nominator. (These can be answered in one post or many.)

1. Why did you start your blog?
I originally started this blog to keep our friends and family updated on our pregnancy. It was overwhelming having to talk about our baby having Down syndrome, the many doctor appointments, and the various test results to every single person that asked. This blog also became an outlet for my emotions. I am not one to keep my feelings bottled up. I needed to be able to talk about my feelings. Unfortunately, some people found the subject matter (or my raw emotional state) upsetting so it was hard to have actual conversations outside the two or three people I routinely relied on. This blog continues to be a way to keep friends and family updated, as well as an online journal of sorts about our lives. Most importantly, it has been a way to connect with other people who have been through similar experiences. I have had women reach out to me after they received a prenatal diagnosis. They tell me how a certain blog post touched them or helped them or eased their fears or made them feel not so alone. That is the driving force of this blog today. I want to reach others who have just been told their child has Down syndrome, or more recently, Infantile Spasms. I want others to see that although it isn’t always roses and rainbows it really is ok. What feels like the end for so many really is just the beginning. I am so grateful for the opportunity to show my readers just that.

2. What is your favorite book?
I love to read but rarely find time anymore. My all time favorite book is probably ‘The Art of Dancing in the Rain’ by Garth Stein. It’s told from the perspective of a dog. Brilliant.

3. If you could meet any historical figure, who would it be and why?
Rosa Parks. She stood up (or more literally, sat down) for what she believed in. She took on the bullies who treated her poorly. She didn’t back down when faced with the daunting task of demanding human rights. She helped change the world with one act of defiance. You go girl!

4. What is your favorite outdoor activity?
Camping. In a tent. Although I’d happily sleep in a trailer if we had one!

5. If you could only have one dessert for the rest of your life, what would it be?
Yellow cake with chocolate frosting. Mmmmm!

6. Led Zeppelin or Rolling Stones?
No question – Led Zeppelin!

7. What is your favorite movie?
JFK

8. If you could live in any time period, which would it be?
This was a hard one for me. Each era had turmoil. Originally, I thought the 60’s – Leave it to Beaver made life seem ideal back then. But there was war and segregation. The 90’s were a pretty great decade to live through but I don’t know that I’d want to go back. I like the technology of today but the simplicity of the past. But then again, the future excites me. Hmmmm, maybe I’m happy right here, right now.

9. What is your favorite holiday and why?
Christmas. I love everything about it. The twinkling lights, the smell of pine and cinnamon, finding the perfect gift, Christmas carols, family traditions, and most importantly, the reason we celebrate it!

10. What is a trait you admire most in people?
Honesty.

11. In which Olympic event have you imagined yourself winning a gold medal?
Gymnastics – although I’ve never been a gymnast. Every four years after the women’s all around competition has aired, you can find me in the yard doing cartwheels and “routines”. I am lucky I haven’t broken my leg.

Step Four: Create 11 questions for your nominees to answer.

1. Why did you start writing a blog?
2. What is your dream job?
3. The ocean or a lake – which do you prefer?
4. If you had to pick one place in your city/state to bring a tourist where would you take them?
5. What is your favorite drink? (Alcoholic or non-alcoholic)
6. Best invention of the last decade?
7. Where is your favorite place to vacation?
8. Paper, plastic, or re-usable bags at the grocery store?
9. What is the one thing you would save from your house in a disaster (besides people and pets)?
10. What is your favorite animal and why?
11. If a news reporter was to follow you for a “Day in the life of…” segment, what would the headline say?

Step Five: Recognize 11 blogs (doesn’t have to be 11!) that you feel deserve recognition. These blogs should have less than 200 followers to the best of your knowledge. Remember to notify them by leaving a comment on their blog with a link to the nomination!

I love so many blogs, mostly ones written by my fellow Down syndrome mommies. I know a couple have already been nominated for a Liebster Award so I didn’t include those. These blogs are definitely ones I think YOU should check out, therefor they are my nominated blogs (in no particular order):

Loving Kayla Lynn

My C’s in the Country

The Dale Family Four

our three little birds

Blessings Beyond the Ordinary

Kelsi’s Corner

Step Six: Display the award badge on your blog.

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Post surgery update – Day 4 (Going Home!!!)

Our wonder boy is heading HOME! Just 4 days post open heart surgery. The nurses are sad to see him go but we are so excited to leave. We have had the best care at Seattle Children’s Hospital and are so thankful to the surgeons, doctors, nurses, and staff who cared for our little boy but there truly is no place like home. Thank you for your continued prayers, love and support. Reading your messages helped this mama get through the scariest time of our lives. xoxo

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The Harrington’s are headed home!

Sorry to those I’m friends with on Facebook – this is just a copy from my FB page (I’ll write more about my experience once we’re home and settled – promise!).

We are going home! After 6 days, 5 hours, and 25 minutes we’re leaving the hospital. Although the care and attention we have received at Overlake Hospital has been superb, we are overjoyed to be able to bring the newest member of the Harrington family home to see his big brother. Thank you to everyone who has supported us on this journey. We knew we’d face some challenges but had no idea our little boy would have to overcome so much so soon. Eli’s proven to me that regardless of chromosome count he’s lovable, huggable, and most of all one tough cookie. Bring it on, world! Eli Michael Harrington, his big brother, and his parents are ready for you.

Special thanks to the labor and delivery staff: nurse Leslie, Dr. Lawler, and Dr. Levin (and the numerous others in the room whom I’ve forgotten their names!) for taking such good care of me before and during delivery. Thank you to the nurses in the mother and baby unit for encouraging and supporting Chuck and I when we were discouraged and scared (Marika and both Kim’s). Thank you to the amazingly patient and talented staff in the NICU for caring for our baby boy (and us!) 24 hours a day. Thanks for not judging us when seeing us at our worse (3am feedings) and celebrating every achievement with us like Eli was your own (Tracy, Kathy, Joelle, Sara, Kelly, Peggy, Dr. Kendra, and many others who ooh’d and aah’d over our sweet boy). The care team at Overlake made this scary week seem tolerable and manageable. They are the best!

Today is a great day! xoxoxoxo

Before I formed you in the womb, I knew you. Before you were born, I set you apart. Jeremiah 1:5

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Eli update – Day 5

What a day. Finally sitting down to eat dinner. At 6am we were informed that we would have to give up our room as actual patients were in need of it. No biggie. We packed up our stuff and brought the few things we needed to settle in at the NICU. Our day nurse started talking about Eli being ready to go home soon. Silly me got my hopes up to think soon meant today. It didn’t. So here I was in the confined spaces of Eli’s NICU room, crying my eyes out cause I just want to go home. I don’t want to sleep in the NICU!!! I want my family all under one roof! Thankfully Chuck was able to calm my hormonally challenged mind down and helped me to focus on the good things. Eli is off all air! His feeding tube and IV are both gone! He passed his 90 minute carseat test! Cody and Nana came up for a visit! I don’t want to get my hopes up again BUT this evening the nurse started going over discharge paperwork for Eli “just in case”. Oh, and we got another room to sleep in! I’m exhausted. I forgot how hard having a newborn to feed every 3 hours is. In fact I think I’ll close my eyes now and try to get some sleep before its time to feed the lil guy again. Fingers crossed for fantastic news tomorrow!!! Good night friends! Zzzzzzzzzzzzzzzzzzzzzz
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Eli update – Day 3

Update on Eli: So today was exciting and then discouraging. Eli was taken off the oxygen and his IV was removed.😃 But then later they had to put him back on the oxygen.😔 His saturation levels kept decreasing, especially when he was sleeping. Good news, he’s eating like a champ. Just very frustrating that we take one step forward, two steps back. I just want to take him home so I can have both my boys under one roof. I found out today that we could only miss one feeding per day. So that means Chuck and I cannot both go home. And unfortunately, due to the c-section and pain pills, I can’t drive. I was really hoping both of us would be able to be home on Halloween to trick or treat with Cody. 😔 I guess that won’t be happening. Each day I feel more guilty for not being there for Cody. It’s just not fair. Now that we’re “rooming in” and I’m no longer a patient, we’re responsible for all our meals. We live an hour away from the hospital so it’s not really possible to go home for each meal. I just hope Eli continues to make more progress than set backs because we can’t afford this “lifestyle” for long. These are all things that I would not have ever thought we’d need to worry about. I was worried about silly things like the future. I never imagined we’d face such challenging obstacles, like how to keep our family together, this early on!
Sorry to sound so whiny. I’m not trying to be. It’s just one of those days where feeling sorry for myself takes over the positivity. Thank you so much for all your comments and for every good thought and prayer. To have so many people care is truly humbling. I know this is only a temporary set back to an amazing boy’s life. I just pray that this little detour is over soon.

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HAPPY TO BE OXYGEN AND IV FREE

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TOTALLY CONTENT AFTER DINNER