Friday, October 16, 2009

Our Baby Faith

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Yesterday was national Pregnancy and Infant Loss day. I never even knew there was such a day. December 11th is normally my special day of remembrance for our sweet baby Faith. It is the day she was born. The day we met her face to face. It is a day I will never forget as we were unsure if we were ever going to be able to hold her. At five months pregnant we found out that she had severe midline defects which indicated Trisomy 13 or 18. An amnio confirmed that she had Trisomy 13, most likely a fatal condition. Of those born alive with Trisomy 13, 80% die in the first month. We were devastated. And yet, I experienced the peace of God like never before.

I usually get bummed around her birthday. Miss her. Long for her. Wonder what she would be doing if she were still with us. But I also have hope on that day. And I have joyful memories of the way God carried us through that pregnancy. Ironically, when I was carrying a baby that was going to die, I understood the love of God like I never had before. His presence and concern for my life was evident time and time again. When I was at my lows and felt like I couldn't go on, He met me there. He brought the right people into my life to say the things I needed to hear ... just when I needed to hear them. Not a moment of my pain and suffering was wasted. God had purpose in my pain. I started a blog about my journey with baby Faith. I still haven't finished it, but it details some of those amazing experiences. We were blessed to hold her for four days before she made her way up to heaven. Last week I spoke at Mothers Together about grief. I shared my story. I also shared ways you can help people as they walk through grief. Here is the podcast if you feel like crying ... and laughing.

My heart goes out to those who have lost babies. God has not forgotten you. No tear has gone unnoticed. I don't understand it all, but I know God has purpose even in our pain. Look up.

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Lorri said...

Thanks for sharing Baby Faith with us. I always remember her and your story that surrounds her birth. Sending hugs!

Rose said...

She's beautiful. Thank you for sharing her with us.

mel said...

My thoughts & prayers were with you yesterday & are with you today as you continue to remember & honor Faith's life. Your strength is amazing. Looking forward to reading more about your journey. Can't wait to listen to the podcast this afternoon.

Christiaan said...

Thanks for your example and testimony!

Trisomy 13 - Patau Syndrome Support said...

Hi, You are welcome to share your story on the Living with trisomy 13 .org site Treasured Memory pages and we can link back to your blogs if you'd like.

I'm so glad you carried to tem to experience the beauty, love, life and blessings these amazing kids bring.

I also want to just share for your readers that sadly there is much misinformation on trisomy 13 on the internet and in the literature. As you state in your blog "An amnio confirmed that she had Trisomy 13, a fatal condition." Trisomy 13 is not always fatal, it is not universally fatal. So this statement is misinformation that really needs to be clarified for those who happen upon the sites.

The current treatment for trisomy 13 is to look at these kids on a case by case basis, as the trisomy 13 is presented differently which each child. They are as unique as you and I.

Thank you for sharing your story on Baby Faith, its inspirational.

ThereseAnn, mom to Natalia

Totally Desperate Mom said...

TheresAnn, Thanks for your comment and encouragement. I guess my saying that Trisomy 13 is fatal is a matter of interpretation. The way I see it, full Trisomy 13 is fatal. I know there are some cases of people living into adulthood, but I believe those are mosaics. With maybe a few exceptions. And 80% of Trisomy babies die in the first month if they even make it to birth. Perhaps I should have said, for the most part, Trisomy 13 is fatal. I will edit the post accordingly.

Anonymous said...

Wendy, as I am already sad about the loss of a friend, I cried at this post. Your strength and faith have been wonderful to see unfold. I see it through your blogging, and it has helped me tremendously. I am so blessed to know you and your precious family dear friend.

Julie said...

Wendy, this post is inspriational. Thank you for sharing your "Faith". You are wonderful!

Kate said...

Wendy, thank you for this. It came at just the right moment. October 14th marked the day that they told us something was wrong with Gabe. Hard to believe that it all began one whole year ago... so thankful for you and your willingness to share!

Tegan and Tage said...

Beautiful post, thank you for sharing. (Found you through Mel a the Larson Lingo.)