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trisomy 18

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Her baby has trisomy 18. She reminds us to enjoy every moment of parenthood.

She was told her newborn could die within days. That baby just enjoyed her first birthday.

Imagine that you're a woman who finds out during a routine doctor's appointment that your unborn baby could die within days of her birth.

That's what happened to this mom.

Motherhood isn't easy for Heather Peterson. All photos are from the Peterson family and used with permission.


In case you missed it, we recently covered the story of Nathan and Heather Peterson. Their daughter Olivia was born with trisomy 18, also known as Edwards syndrome. 

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Babies with this condition usually experience numerous medical difficulties, including problems with their vital organs. Sadly, only about 10% survive to witness their first birthdays.

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Olivia is one of the babies who beat the odds. She celebrated her first year of life on Jan. 7, 2016.

Big smiles for Heather, Nathan, and baby Olivia.

Previously we told the story from Nathan's perspective, but what was it like for the mom who went through it all? 

Heather went to her 20-week sonogram appointment and the doctor became quiet while reviewing the results. That's when she knew something was wrong.

The doctor confirmed her fears. Trisomy 18 was the diagnosis for her unborn daughter.

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After giving the news to Heather, the doctor and nurse waited for a response. With tears streaming down her face, Heather responded by saying, "We're going to be OK."

In spite of the darkness surrounding the news, Heather was able to see the light.

"I remember explaining this to the nurse and doctor, and they were amazed by my strength in light of everything," Heather told Upworthy. "But I sensed that a bigger thing was happening."

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A few days after the diagnosis, she felt it was an opportunity to use her experience to help others in a similar situation. That in itself gave her a sense of purpose even though the days, weeks, and months to follow were extremely difficult. 

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"I felt radiant and a friend remarked that I was glowing," Heather said. "Of course I broke down in despair many times as I thought about the road ahead of me."

Even though Olivia has celebrated her first birthday, Heather's still taking things day by day.

Olivia's first birthday cake, made with love by proud mom Heather.

Remember, approximately 9 out of every 10 babies diagnosed with trisomy 18 won't live to celebrate their first birthdays. This was a huge milestone for the Peterson family, but Heather experienced mixed emotions.

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First she described Olivia's actual birthday, and it was awesome.

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"It was peaceful and everything came together perfectly," Heather said. "I didn't worry about whether everything was going to get done, or worry about Olivia's future. I just thoroughly enjoyed the day."

Olivia's first birthday was wonderful for everyone involved.

But after the celebration was over, the intense fear began to sink in. 

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Heather feared Olivia would be unable to transition from nursing to drinking from a cup. She feared Olivia's birthday could signify the beginning of the end of her life. She feared the gut-wrenching moment when she has to say goodbye to her baby girl.

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That's when she took a deep breath and focused on the things she can control — namely, giving Olivia all of mommy's heart right now.

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"I wasted weeks worrying about the future instead of enjoying the present with my daughter," Heather said. "My job is to love Olivia while she's here." 

And now she has something to say to other moms who may be going through the same thing.

It goes without saying that raising a baby with trisomy 18 can be extremely difficult. Heather has lived it and offers her thoughts to mothers who are experiencing it. 

The days and nights are often exhausting for Heather.

"I grieve for you, mama. I know this road, and it is so painful and beautiful. Enjoy life now, in this moment, in the tiny things around you. Learn how to ask for help and draw closer to the community of friends and family around you. It can be difficult to lean on them, but you will see how much they love you when you allow them to ease your pain."

And for the moms in relationships, she reminds them that they have the green light to be as "much of a mess as possible" and their spouses do as well. The key is to not take anything personally and know that as long as both parties communicate and stay close to each other, it will make things easier. 

You know those milestones that many parents take for granted? The Peterson family reminds us all to enjoy every single one of them.

As parents, we love the milestones our babies experience. It could be when they giggled for the first time or when they learned how to drink from a sippy cup. We may have snapped a photo or rolled some video, but afterward, it was on to the next thing without giving it much thought.

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It's different for the Peterson family. They didn't know if they would ever witness Olivia laughing or drinking from a sippy cup on her own.

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But they did.

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Olivia even laughed out loud for the first time a few weeks ago. See for yourself. 

Throughout the otherworldly tantrums our kids throw in public places and the negotiations we facilitate to get them to eat just one bite of broccoli, we should be reminded to love every moment of the chaos. 

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Heather knows this. And she embraces it all. 

Nobody knows for sure if Olivia will be here to celebrate her second birthday, but the Peterson's music group Hello Industry says it best in their song titled, "The Innocent Will Die." 

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"Anything is possible."