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371 || An Unexpected Gift: The Bigger Picture of Down Syndrome

For a long time, Jillian Benfield’s blog featured a perfect illustration of the perfect family: A retro drawing of her and her husband Andy, their bright-eyed baby girl, Violet, and their fluffy dog. Andy was depicted in his Air Force uniform, and she was in an apron. The blog, titled, “News Anchor to Home Maker,” featured a variety of posts documenting the Benfields’ lives as they journeyed with the Air Force, recipes they enjoyed, workout tips and Jillian’s transition from successful news anchor to stay-at-home mom.

But if you look today, the picture gracing the top of the blog has a noticeable addition—a little baby named Anderson and a brand new tab to search under: Down Syndrome Blog.

When God’s Answer Is “No”

In August 2014, the Benfield family thought they were facing the major crisis of their short marriage. Jillian, Andy and their baby, Violet, had just been relocated to Alamogordo—a tiny, desolate map dot in the middle of the New Mexican desert. Andy, an Air Force dentist, had been reassigned, and the move had uprooted the young family and moved them away from the close proximity to their own relatives they had enjoyed.

Pregnant with their second child, the couple cried as they drove into their new hometown. They had prayed over their dream sheet—a list of assignment preferences they submitted to the Air Force—and hadn’t been granted a single one. How could God possibly plan to call them away from the security of their families and friends to a no-man’s land halfway across the country? They were nervous to start their new lives, but they held on to the one bight spot of hope for their next chapter. They would very soon get to find out the sex of their new baby.

It was at that 20-week ultrasound that their lives would take an even more devastating turn. Jillian wrote about that fateful, August day in her blog:

I remember (the nurse) saying, “Well it must have gone well because if it didn’t, the doctor would be in here to talk to you.” I remember as soon as the sentence came out of her mouth, the doctor was at the door. I remember him saying that they found some markers on the ultrasound indicating that there could be a genetic problem with the baby.

For more than two weeks, the Benfields embarked on a roller coaster of tests and results, some promising. But most seemed to point in the direction of Down syndrome. They cried out to God to let the news be good. Then, on September 8, 2014, they received the call they had dreaded.

“I got a call from Andy, and he could barely speak,” Jillian remembers. “He was on his way home from work even though he had just left the house after his lunch break. The doctor had called and told him that it wasn’t good news, and we had to come in and talk about the results.”

That was the day the Benfields found out their son, Anderson, had a 99% chance of being born with Down syndrome.

The Day Peace Came

Throughout the remaining half of their pregnancy with Anderson, Jillian documented the diagnosis journey in her blog. From grieving to anger to acceptance, the Benfields rode the tumultuous waves of this diagnosis out loud, and the digital world began to follow. They prayed for miraculous healing of their son, that God would take away this diagnosis and he would be born without Down syndrome. But if God’s answer was again no, they prayed He would use Anderson’s life and his story.

Already little Anderson was beginning to make an impact on the world through his mother’s written prayers and raw vulnerability as they walked through their darkest days. Then, on New Year’s Eve, Anderson made his grand entrance, and everything changed.

“I finally felt peace when he was born, and we got to bring him home,” Jillian remembers “All of the grief I felt finally went away when I saw him.” Even though they had prayed hard for a miraculous healing, the Benfield were far from disappointed when Anderson was born with Down syndrome.An Unexpected Gift: The Bigger Picture of Down Syndrome

Jillian wrote of her son’s birth, “The doctors then handed my son to me, and I knew. The answer was in his eyes. He had Down syndrome. And I wasn’t disappointed … I felt at peace. I stared at the gorgeous, darling boy in my arms, and I knew his life might be different than I had imagined, and I knew it would be okay.”

The worst four months of their lives were finally over, but the Benfields still had their share of praying to do in the next few months. Doctors had discovered a hole in Anderson’s heart earlier in the pregnancy, and instead of closing up on its own as they hoped, the hole grew bigger. In fact, they would later learn there were actually two holes. Instead of being able to forego open-heart surgery, their little baby would need it before his sixth month of life.

It was then that Jillian describes actually feeling prayer’s power for the first time.

“The day I had to hand my sweet five-month-old over to doctor who would crack open his chest and cut into his heart, today, I felt the amazing power of prayer…The strength was not my own,” she says. “The peace was not my own. It was, ‘He whose power is made perfect in my weakness’ (2Corinthians 12:9). I believe that power was even more consuming for us today because of the hundreds of prayers being said for us around the country.”

Anderson fought his way though that surgery, to the delight of the staff who operated on him. Indeed, he continues to fight as each childhood milestone approaches, while his family looks on knowing he will face more challenges than most children in accomplishing them.

Looking Forward

As Jillian adjusted to life as a mother of two-one precocious toddler and one special needs infant—she admits there were some trying times in her faith. “For the first three months I really had some dark moments. But the turning point was when Anderson’s personality started coming through. When he started to smile for the first time, it changed everything,” she says.

It was in those moments the Benfields would begin to watch their uncertainty and fear of Down syndrome blossom into something extraordinary: the opportunity to show the world perseverance as Anderson tackled each milestone.

“All of the sadness is gone surrounding Down syndrome,” Jillian explains. “When we got the diagnosis, we thought it was a death sentence and that Anderson would have no quality of life. We didn’t know how uneducated we were. Now we are so full of hope for his future. We don’t think it’s going to define his life anymore.”

A Heart for Advocacy

If any message comes through when talking to Jillian or reading her blog, it’s that Down syndrome won’t be her son’s identity. It doesn’t define their family or their future. It’s a part of their son, just like his infectious smile. It’s a part of their family story, just like their daughter Violet is.

So what does the young couple hope for their son? They hope for the very same things every parent hopes for: that he will love and be loved, that he will be independent, and that he will define his life instead of Down syndrome.

“Even though I know Anderson will have mental and physical delays, I will expected him to do his best, to try his best, to be his best self … just as I will expect the same from his sister,” Jillian writes in her blog. Indeed, the Benfields plan to hold their son up to the same high expectations they hold their daughter to. And they have no doubt he will achieve them.

In Anderson’s short life, God has already used his unique story and his mother’s passionate advocacy to impact many. Several of her blog posts have gone viral, including an open letter she penned to her son’s heart surgeon, telling him why she didn’t want to meet him.

Her post describes how angry she was to be driving to the doctor’s office, when all along she had been assured Anderson’s heart issue would require surgery. She remembers researching this doctor extensively, only realizing he was “the one” when she asked if he had ever lost a child during one of these procedures. When he dropped his head, quietly whispering, “Yes,” his raw honesty and the obvious depth with which he still felt the loss told Jillian this doctor would take special care of her special boy.

“In Anderson’s ten-month life and through pregnancy, we’ve been able to make way more of an impact than we would if he didn’t have Down syndrome,” Jillian says. Parents regularly reach out to Jillian after they have received a diagnosis, or their special-needs child is born. Across the world, a beautiful community has banded together thanks to Internet writers like Jillian and the abundance of resources now readily available to these extra-special families.

So what do Andy, Jillian, Violet and little Anderson want you to know?

Jillian explains it clearly: “We aren’t suffering. Anderson does not suffer from Down syndrome, and we as a family do not either. In fact, we are thriving. We are thankful for our lives, and we are thankful for this gift.”

You can read more about the Benfield’s life, their journey with Down syndrome and their military adventures at newsanchortohomemaker.com.

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