Every breath of your life is something to be thankful for.
That’s the mindset Aleisa Yusko embraced after Jan. 9, 2012 when she found out her then-unborn daughter faced a life-altering diagnosis that would forever affect her family.
Doctors voiced concern involving developmental complications with the child.
After running a few tests, their concerns turned into Aleisa, her husband William and every expecting parent's worst nightmare. She had Edwards syndrome, also known as Trisomy 18, a condition caused by an error in cell division, known as meiotic disjunction, according to the Trisomy 18 Foundation.
"Basically the amniocentesis (procedure used to diagnosis chromosomal abnormalities) had given a death sentence to our unborn baby," said Aleisa who has two other young children, Gavin and Greta.
Unlike Down syndrome, which also is caused by a chromosomal defect, the developmental issues caused by Trisomy 18 are associated with medical complications that are more potentially life-threatening in the early months and years of life, according to the Trisomy 18 Foundation.
Approximately 50 percent of babies with the defect carried to term are stillborn. Less than 10 percent make it to their first birthdays.
Nearly 25 weeks into her pregnancy, the mother-to-be was told her child would be lucky to live for a few hours.
"We weren't expecting much but I really couldn't bring myself to plan for a funeral," recalled Aleisa.
The Hebron, Ky. family struggled with general day-to-day tasks after receiving the news and were unsure of how to approach the situation.
Aleisa said they "learned to just take each day one hour at a time and to rein our thoughts in from straying too far into the future."
They didn’t even have a nursery set up at home.
"I didn't want to have to take it all down. So it was this state of uncertainty just taking it one day at a time," she said.
Although the outcome seemed grim, the family turned down the option to induce preterm labor to “just get this over with.”
There was no "easy way out" of the situation for them because "for whatever reason, God chose (them) to be parents of this little person," Aleisa said.
She wanted to "allow (her) baby to remain safe, warm and loved inside of (her) until God decided (her child's) time with the family was up."
While saddened by the prospect of parting with the child she had grown to love before ever meeting, Aleisa said she knew there was a "plan" put in place by a higher power.
But then a "miracle" occurred on April 17, 2012. Nora Rose was given the gift of life.
"She is such a gift. (Some people) might describe her medically as a genetic mistake but she is wonderfully and beautifully made. She is exactly who she is supposed to be,” the grateful mother said.
The first obstacle was making it through the birthing process. The second was finding the strength to live.
And she did because, much like her mother, Nora is a fighter.
She made it through those crucial first few hours of life and then survived her first full night. She kept fighting through the days, weeks and months.
Now, 19 months later, the Yuskos have had put together a nursery. They've also needed to purchase diapers, supplies, toys and even birthday presents for the toddler who is rapidly approaching her second birthday.
While thrilled to have Nora in their lives, the Yuskos admit they've faced challenges over the past few months.
"Life is very different now than it used to be or that I imagined it would become since the day I found out I was pregnant. It’s still very beautiful, but very different. I do the absolute very best that I can around here to maintain some sense of 'normal,'" Aleisa said.
She started a blog to document the highs and lows of raising Nora and the challenges she and her young family face on a daily basis. The name of the blog, "I Will Carry You," reflects the promise Aleisa made to her daughter to carry her through the pregnancy and throughout her life -- however long that might be.
The updates share Aleisa's raw emotion -- sorrow, anger, fear -- only to then show her and her family's ability to overcome and their unimaginable joy of life with "Nornor."
"I am so thankful for everything Nora has taught me by just simply being born. She has taught me how to completely surrender to God and to trust His will. She has released my grip on so much of what I benightedly claimed as MINE," wrote Aleisa in the a Blog entry entitled “Thankful.” It was posted Nov. 16, 2013.
"Her little and mighty life completely devalued the importance of what kind of car I drive, what kind of purse I carry, house I live in, clothes I wear, what people think about me, etc. She has forced me to reevaluate my priorities to better reflect this fleeting life here on earth.”
From her writing, thousands of lives have been touched, changed and inspired.
"The emotional roller coaster she describes in her blog was often unbearable for me to even read. She openly discusses her raw emotions and it’s more than evident how her faith is the only reason she’s made it this far," wrote Cincinnati-based photographer Melanie Pace who documented Nora's birth on the Beautiful Beginnings Birth Photography website.
That post has been shared thousands of times via social media, which pales in comparison to the attention Aleisa, Nora and the Yuskos have received thanks in part to "I Will Carry You."
"The day she was born she got so many hits on the blog that day," said Aleisa, adding that Nora's popularity continues to grow online as she continues to grow as a person.
While the Yuskos are happy to call Nora a member of their family, they know the road they'll travel together won't be an easy one. But they're not giving up.
The family is religious and turns to their faith to help them cope with the situation. They also rely heavily on their love of one another for support in their times of need. And medical research shows them they can hope for many more days and years with Nora, who receives in-home care from nurses.
According to the Trisomy 18 Foundation some children with disorder can enjoy many years of life with their families, reaching milestones and being involved with their community. A small number of adults (usually girls) with Trisomy 18 have and are living into their 20s and 30s, although with significant developmental delays that do not allow them to live independently without assisted care-giving.
As she has done since Nora came into her life, Aleisa is taking things as they come and enjoying every day she has with her daughter.
"Life is under no obligation to follow my to-do list,” she said. “I've learned to be very flexible and not get bent out of shape when things don’t go the way I planned."
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