Posts tagged ‘Choose life’

Today is National Trisomy 18 Awareness Day!

Today, March 18, 2010, is National Trisomy 18 Awareness Day!

National Trisomy 18 Awareness Day occurs on the 18th day (to represent the chromosome affected – the 18th chromosome) of the 3rd month (to represent the trisomy – the 3 copies of the chromosome) of the year.

What can you do?

  • All of you on Facebook, to raise awareness consider posting this as your status for today:

Today is National Trisomy 18 Awareness Day, the 18th day of the 3rd month, 3/18. Please consider reposting this as your status if you know someone who has been diagnosed with Trisomy 18 along with that child’s name to help raise awareness and honor that child’s life. If appropriate, consider using an image of the child as your profile picture for today. ~In loving memory of my daughter, Hailey Marie Vanderlip~

  • You can share links to my blog or to my posts about Trisomy 18 via facebook, twitter, email, etc.
  • You can share the YouTube video ’99 Balloons’ about Eliot, probably the most famous baby diagnosed with Trisomy 18, via facebook, twitter, email, etc
  • You can spread the word about Trisomy 18 with others in your conversations today and help educate others.
  • You can educate yourself if you still don’t know much about Trisomy 18.

Here are some links you might consider sharing:

March: Trisomy Awareness Month Blog Post

Hailey’s Story on Be Not Afraid

99 Balloons

Trisomy 18 Foundation

Trisomy 18 Hope

Do you know someone besides Hailey who was diagnosed with Trisomy 18? Leave a comment for me, I’d love to hear about it!

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March 18, 2010 at 3:53 AM 2 comments

Now I Lay Me Down to Sleep

On December 4, 2009 we learned of Hailey’s fatal diagnosis, and we were moved to a private room where we were able to spend every minute with Hailey and truly enjoy her. We received a lot of information that day and had a lot of support services offered to us. (Talk about information overload and feeling overwhelmed!)  The palliative care nurse assigned to us told us that she could pretty much make anything happen for Hailey that we wanted – and yes, the idea of sneaking Opie into the hospital was discussed as a very realistic possibility. šŸ™‚ But thankfully we didn’t have to do that…but they did order a birthday cake for us on her 1 week birthday šŸ™‚

One of the pamphlets and services that was offered to us was something called “Now I Lay Me Down to Sleep.” Now let me tell you, as a new mother who just learned that her baby had a fatal disorder, I was only able to read the title of organization before bursting into tears. The name was the saddest thing I ever I thought to myself… Thankfully the palliative care nurse explained the mission statement of the organization since I couldn’t read it on my own: Click here to keep reading!

March 14, 2010 at 3:07 PM 1 comment

Please, Be Not Afraid…

Tonight I was ‘surfing the web’ looking around at infant loss and grief resources. I came across a website called “A Heartbreaking Choice” …Ā  here is a snippet from their homepage:

We realize that all parents make a loving choice, one they feel is better for their baby. Regardless of the fetal anomaly found, the decision to end a pregnancy is always a difficult one.

And listed below on the homepage:Ā  “New Sections – Trisomy 18” – a page that has 6 stories of aborting babies with Trisomy 18.

My heart breaks and my stomach aches…tears are filling my eyes and I want to scream out. I have always known that many parents choose abortion when their child is given a lethal diagnosis, but seeing this online made it all the more ‘real.’ And it’s all the more personal to me to see these Trisomy 18 stories, I think of Hailey, my precious, beautiful Hailey…

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March 7, 2010 at 4:04 PM Leave a comment

March:Trisomy Awareness Month

March is Trisomy awareness month!!

If you know me and/or have been following my blog, you know that my daughter Hailey Marie had Trisomy 18.Ā  You may also have a general understanding of the genetic disorder by knowing about Hailey’s life and reading some of my other posts. So some of you are already a little aware of Trisomy 18! But this month I challenge you to become more aware and spread the word about Trisomy 18 and Hailey’s life!

For this post I’m going to share some basic information about Trisomy, my experience with Trisomy 18, and some resources about Trisomy 18 and the other Trisomies.

About Trisomy

Trisomy refers to the presence of 3 copies of a chromosome instead of the normal 2. The presence of the 3rd chromosome interferes with normal growth and development. Three of the most common Trisomies are 13, 18, and 21 (there are other more rare forms of Trisomies that I will not get into). These are considered genetic disorders, and occur at conception. Some Trisomies are inherited from the mother or father, while others are not inherited at all but happen spontaneously. Generally speaking, as women get older their chances for conceiving a baby with Trisomy increases.

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March 5, 2010 at 2:49 PM Leave a comment

Sharing Hailey’s Story

I just finished writing and submitting Hailey’s story for Be Not Afraid – you can find the link to the organization in my list of links on the right of the page. I’m very excited for the chance to have Hailey’s story published on their website and encourage other women to not be afraid of diagnoses like Trisomy 18. It is one of the best resources I have come across because it is so inspirational, positive, and encouraging. I will keep you updated and let you know if/when it gets posted.

I’m also going to be writing a short article for a pregnancy center’s quarterly newsletter that will go out this summer- nothing ‘major’ by any means, but I love any chance I get to share about Hailey! šŸ™‚

February 24, 2010 at 1:51 PM 1 comment

Something to read and think about…

I’ve added a new article to my “Turn Mourning into Dancing Page” called “Tough Questions” that is a great, short read.Ā  A family friend shared it with me.Ā  The article shares two different experiences two mothers went through with their babies. Some of my story with Hailey can be found in both of the stories shared.

For after you read: (‘spoiler’ warning)

What are my thoughts after reading the article?

1. The early screenings pregnant women under go are very unreliable. In the article, the first woman was told that her baby would have Trisomy 21, but she ended up having a healthy baby. In the article, the second woman was told that her baby would have Trisomy 21, and her baby did have Trisomy 21. In my life, I was told that Hailey might have a Trisomy disorder during the ultrasound portion of the screening, and later after the 2nd part of the screening was completed (the bloodwork) I was told that Hailey would not have a disorder after all and she would be a healthy baby. However, Hailey did end up having a disorder, Trisomy 18. In all cases the screenings failed.

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February 21, 2010 at 9:54 AM Leave a comment

99 Balloons

Here is the “99 Balloons” video about Eliot a Trisomy 18 baby. His parents did an amazing job telling his story. It’s clear that God sent this child to this specific couple for how loving they were! I imagine him playing with Hailey in heaven. šŸ™‚

January 12, 2010 at 4:00 AM 1 comment


Dedication

"God gives, God takes. God's name be ever blessed." ~Job 1:21

In Loving Memory of Hailey Marie

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