Trisomy 13 Research Project

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It’s been 7 months since we found out the heartbreaking news that April had trisomy 13 and wouldn’t be surviving in this world with us. It’s been 7 months since we had to go through the hardest moments of our lives.


When I shared our story on this blog, I did so for a couple of reasons:

1. We’d already shared the news that we were pregnant, so friends, family, and readers were certainly going to want an update on the pregnancy. My weekly pregnancy posts were some of my most popular posts, so I knew I owed it to everyone to keep the updates coming, no matter how hard hey were to face and write.

2. Writing became very therapeutic. Writing helped me to really think through my thoughts and come to terms with everything that was going on. Writing was my therapy and my chance to “talk” things through with myself.

3. I quickly realized I needed to be a voice for others. In my searches online, and all of my research on trisomy 13 and others’ experiences, I simply didn’t find information that was representative of what was real. I found a lot of “inspirational” stories that told only part of the story and failed to mention all of the medical struggles and surgeries that babies had to go through.

I found no stories representing the choice to induce early. Since I knew in my heart that was going to be our route, I also knew I needed to stay strong and represent that voice online for other parents. I knew if our story helped just one other family, it would be worth the vulnerability of sharing our story.

At the beginning of January, I was contacted through my blog. I woke up to the following request, and my heart was so full of joy…

“I have been researching cytogenetic disorders and have recently come across one in particular that I want to learn more about: trisomy 13, Patau syndrome. For a project at school, I have decided to research and share what I have learned about trisomy 13 to my classmates to spread awareness and to show them a new perspective.”

“I stumbled across your blog in my scrolling and scrolling through websites and my heart was broke, but was also warmed. I’ll admit, I cried reading through some of your posts. I am touched by your story. You are a genuine, beautiful, real person. I would love to hear more about you and your story. I am so grateful that you started this blog to share your story, your experiences, information, support, etc. I admire this greatly.”

When I read Leah’s note in its entirety, I was so honored and so touched. The reality is that my writing has touched a lot of people. Mamas reach out to me on a regular basis and share their stories with me. I hate that so many people go through such heartbreaking situations, but I am so glad that April’s story is touching so many.

When Leah contacted me, however, it was a different sort of joy that touched me. Leah is in high school and she was deciding to share our story with her class. I knew immediately that I’d be honored for her to share our story.

Our story is something that many have not considered when formulating their views on pro-life or pro-choice. Our story would have been greatly different had the laws been more restrictive. Our story needs to be told to the younger generations as they formulate their viewpoints, because they control our future. They are the voices that matter. I want nothing more than for stories like this to be shared and heard. So, I was so touched that our story had been found, and was a perspective that was wanting to be shared.

As a science girl at heart and former chemistry teacher, I was also thrilled that her class was looking into genetic disorders like these and diving into the science behind it. I loved that her assignment was also to consider and share real stories and new perspectives. What a great way to learn.

Today, with Leah’s permission, I want to share with you the presentation that Leah put together for her class. She did an outstanding job, and Leah was such a pleasure to work with. I’ll always remember her kind words, her genuine interest and desire to learn more and hear our perspective.

Leah, thank you for being so brave to share our story. Thank you for taking such a genuine interest and having such a unique desire to learn. Thank you for sharing our story. You forever touched our hearts, and you’ve honored April’s legacy in such a special way.

-Katrina



View all of our posts on our trisomy 13 journey here.

Leah’s Research Presentation:

 

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mamasorganizedchaos

Hi there! I’m Katrina (aka Mama). I am a former engineer and chemistry teacher, turned stay at home mom and mom blogger. I have been blogging since 2015, and have taken my love of engineering and science, and tried to applied many of the same methods to my parenting adventure.

I have a huge passion for Babywise and prioritizing sleep for our children. I am mom to 3 (including one angel baby that had trisomy 13). A huge mission of mine is to share her story and legacy. I am a big believer in being real and doing what works for YOUClick here to subscribe to my weekly newsletter to follow our story. 

This blog is intended to be our story and our ideas- including successes and failures along the way. You can also find me published at Today Parenting, Her View From Home, VitamedMD, Love What Matters, and The Mirror. Follow me on Facebook and Pinterest for more parenting tips and to hear more about our journey!

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