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SALT LAKE CITY — Aaron Peterson was never supposed to make it this far.
He is "not compatible with life," according to some doctors. Born with Trisomy 18, a genetic disorder that comes with a host of life-threatening medical conditions, Aaron has been defying the odds for two years.
Only half of children born with the disorder survive beyond their first week. Aaron survived his first week, and his second, and 102 more, making it to his second birthday and hoping to see many more.
"His first year, we were in and out of the hospital more times than I can count," said Rebekah Peterson, his mother. "We never went three weeks between discharge and another visit."
Some doctors wonder whether it is worth it to fight the battles associated with Trisomy 18, but for Rebekah, it was never a question.
"There are dicey times and scary times and times when you're going, ‘Really? Really, one more thing?'" she said. "But the majority of it is just good. I never thought I could raise a special needs child; I thought it was beyond me. But you just do, and you finally realize there is more joy and love than you have ever thought possible."
And the joy has only compounded as Aaron has continued to defy the odds, making it to his second birthday, while only 10 percent of children with his disorder make it to their first. And he seems to be thriving: the Peterson family has only made two visits to the hospital since last fall.
To celebrate Aaron's success, Rebekah threw him a birthday party on Wednesday. Last year, his birthday party drew hundreds. This year, too, saw a crowd.
"We had people who came from across the street, and from a few states away," she said. "Lots and lots of friends, representing just a fraction of the prayers that have gone up to heaven in his behalf over the past two-plus years."
Balloons, too, were released to the heavens Wednesday in Aaron's honor.
"Where do balloons go, Mommy, when you set them free?" read a poem in the Petersons' home. "I hope they go to heaven … as a gift from me."
The balloons represented two long, prayerful years. They were challenging years, to be sure, but also incredibly rewarding, according to Rebekah.
"It's been a great journey," she said. "I wouldn't trade it. I didn't always say that before he was born."
It took a lot of research — in medical journals, not on WebMD, Peterson noted — and a shift in attitude to accept what was happening.
"You go in for that 20-week ultrasound," Peterson said. "The real reason you go is to find out whether you're going to paint your nursury pink or blue. And you're told instead your baby probably isn't going to live until birth. It's absolutely devastating initially."
A network of supporters gave Peterson somewhere to lean during those times she could not go on by herself, but hers has been one of the happier stories.
I think every parent's biggest fear is that their child will be forgotten.
–Rebekah Peterson
"I have friends whose kids have died," she said. "Moms who have walked that road with me, held my hand. Even though you're told it's going to happen from the beginning, you don't expect it. It's still something that happens to other people, not to you or your friend. And then it does."
"Children aren't supposed to die; parents aren't supposed to bury their children. That's not the way it's supposed to work."
She wears a butterfly pin in remembrance of those lost children, so they will not be forgotten, as she knows with a surety that her own son never will be.
"I think every parent's biggest fear is that their child will be forgotten," she said. "It's my way of saying, ‘I won't forget your child. I know he lived. I know she was important.'"
