Tuesday, October 1, 2013

Awareness

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Six weeks ago,  Liam came into our world, and we were hit with something we never saw coming.

"We think he has Down Syndrome."

Those six words made my heart plummet.

Six weeks ago, I felt like I was living a nightmare.  Six weeks later, my view has drastically changed.

I haven't been on this journey for long, but I have learned one important lesson:  Down Syndrome is nothing to fear! 



October is Down Syndrome Awareness Month.

Last year it was just a cause to donate to, but this year it means so much more!

I can honestly tell you that most of what I thought I knew about Down Syndrome was WRONG.  Here are a few things I have learned:

*80% of babies born with Down Syndrome are born to a mother UNDER the age of 35.

*Surprises like the one we received are more common than I ever thought.  Most of the families I have spoken to had a surprise Down Syndrome diagnosis AFTER birth.

*Although people with Down Syndrome have similar physical characteristics,  they look more like their family members than each other.  Liam looks EXACTLY like Dylan did as an infant.

*Physical/Intellectual/Speech delays will not be known until the child grows.  People with Down Syndrome have strengths and weaknesses just like "typical" people. Some people with Down Syndrome may never have a delay.  Others may have delays in all categories. 

*Early Intervention is one of the most important things for people with Down Syndrome.

*It is now more common for people with Down Syndrome to live on their own and even get married.

*The lifespan for people with Down Syndrome has increased dramatically.  In 1983 the average life span was 25.  Today it is 60!




I had so many worries, concerns, and fears when Liam was born.

Liam surprised us all!

So far, with the exception of a few physical characteristics, he is exactly like a "typical" baby.  He is hitting all the milestones when he should.  His health is excellent. His thyroid is normal, his heart is healthy, his hearing is perfect, and his eyesight is normal.  He is very strong and has excellent muscle tone.  He has been lifting his head up since he was 2 days old.  He has even rolled over from back to belly several times, which puts him ahead of a "typical" baby with that milestone. He reached those milestones as early as his siblings reached them. He will be able to receive therapy, as needed, through Early Intervention. 

The only problem he had was with feeding.  He was incredibly sleepy the first few weeks, and had a lazy suck. This caused him to lose nearly 2 pounds. With the help of a lactation consultant, a supplemental feeding device, and a daily bottle of formula, he managed to put back on 1 pound.  At 6 weeks old, he weighs less than the average baby weighs at birth. He is still tiny and gaining weight very slowly, but he's finally eating like a pro!

I can't predict what the future holds for Liam, but I do know this: 

He is an absolute joy.

He is just as miraculous and amazing as Dylan, Lexie, and Lily.

He makes us smile every day.

I can't help but kiss him approximately 5 million times a day.

He is the sweetest, most cuddly newborn I have ever met.

He has the most beautiful eyes, the softest baby faux-hawk, and perfect lips.

He is one of the best things that has ever happened to us.

He is exactly who he is supposed to be.

He is simply amazing and beautiful.

He is perfect.

24 comments:

  1. Beautiful post mama! You're such an inspiration. Liam is adorable, what a perfect little angel.

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  2. I'm so glad to hear he is healthy. He just the cutest. My little brother was a surprise at birth he has downs. The dr didn't even notice it when he was born, it was the pedi who had to tell my mom.

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  3. This is just so sweet. I have to say, reading this brought tears to my eyes. Not in a sad way, but because Liam is so lucky to have you, ALL of you! And you are lucky to have him. :)

    What an inspirational family you are!

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  4. What a sweet, sweet post! Liam's a lucky little man to have you as his mama.

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  5. What a sweet and beautiful post.

    I think he is absolutely perfect too. What a precious and loved little boy.

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  6. He is such a sweet blessing!!! He is so lucky to have you for his Mommy!!!

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  7. just beautiful. Love everything about this post. Liam IS perfect!

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  8. He is beautiful! My girlfriend has a very similar story and has a beautiful 5 year old! He is perfect!

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  9. He's such a doll! I bet you can't stop kissing him. XO Beautiful post.

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  10. I fell off reading blogs after Google Reader went away and am sitting here tonight catching up. Liam is absolutely beautiful and perfect. Congratulations!!!

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  11. Before you announced that Liam had Down Syndrome, and you posted his first picture, my first thought was that he looked just like Dylan. I know that he is absolutely precious to you. He is beautiful!

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  12. beautiful and YES HE IS PERFECT :)

    He is so blessed to have a Mom like you and a family that loves him SO much. A lot I didn't know about down syndrome...isn't it sad how little we know about so much in this life? Thank you :)

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  13. He's perfect in every way and I too think he looks just like Dylan! Adorable!

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  14. He is so perfect. And adored by so many people. We love him!

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  15. He is perfect and a beautiful blessing!

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  16. Perfectly said! What an amazing little joy you have in your life with him!

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  17. He is just perfect and he is so lucky to have you guys as his family! He is blessed as are you guys.

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  18. Definitely he is! He is no different from us. Such a cutie patootie! For sure he will be as lovable as your 3 kids! I am so sorry sissy for the late visit.

    Hugs to you and to your new bundle of joy!
    marice

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  19. He's absolutely perfect! What a great and insightful post post!

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  20. He is an absolute angel! He is perfect! You are an incredible mom with so much love and your family is absolutely adorable! You are an inspiration and your abundant love is everything! Liam is precious, a beautiful blessing!

    Mama Hen

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  21. So glad his eating has improved!! Thanks for sharing all of this and Liams story!!

    Kate @ Raising the Rogers

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  22. As I read your articles I feel like I am reading my exact story. My son was just born on 9/9/13 with the surprise diagnosis of downs. As of now does not have any medical complications and is a typical baby. The only difference is this is my 1st child. I am going to look into the dash for downs locally here in NY. Thank you for your articles. I enjoy reading them and knowing there are plenty of other people in my exact situation.

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  23. Stefanie, I have loved spending the morning catching up on your blog and your family. This post is so touching. You have a beautiful baby and he is so lucky to have been born into a wonderful, loving family who will give him everything he needs. Congratulations, he is perfect. I am going to start following you on Instagram as now that I am a college student, blogging has kinda fallen by the wayside, although I did just update it this week. Excited to follow along your journey. Thanks for inspiring us all with your love.

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