One family's profound journey
Aric Berquist had just left work and was headed home to Ponte Vedra Beach, Florida, when he got a phone call that would change his family’s life.
His wife, Gretchen, was on the line. There was a problem with the new baby they were expecting.
The couple already had three healthy children, ages 10, 8 and 2. They were ecstatic about the new family member who would join them in about seven months. But the results of a prenatal blood test were now showing there was a 1 in 6 chance their baby would have Down syndrome.
"I remember that moment so clearly," said Aric, 43, a media executive. "I was driving over the intercoastal waterway. Right then and there on that bridge, I uttered an expletive."
The news that a baby might be born with a serious genetic disorder can be devastating, crippling for any family. This was no different.
“But then I got a crystal-clear message," said Aric. "Just as I was trying to process this stunning information, a message came to me in a complete sentence: 'Who are you to tell me what a blessing is?'”
The devoted family man, a Presbyterian who leads worship services at his church from time to time, says his head still spins when he thinks about that moment four years ago and what it would mean for his life.
"Don’t get me wrong. I had my worries and fears. Even after that experience on the bridge, even after a subsequent ultrasound confirmed our baby would indeed have Down syndrome, I had some darker personal moments."
He says there was a moment or two, "with all of the problems we were told might happen, that I wondered if maybe it would be easier if a complication with the pregnancy occurred. Those thoughts sometimes haunt me.”
But he added, "As with most things in life, easier isn’t better. And just look at what I would have missed.”
He was referring to the joyous birth, in September 2011, of his son, Asher.
Ninety percent of unborn babies with Down syndrome, deemed unworthy or too much trouble, are aborted in this country before they have the chance to experience life’s first breath. Ninety percent. This means scores of people never know the joy experienced by the Berquist family.
The killing is happening in hospitals and clinics, with whispered assurances that everything will be all right, that the proper thing is being done for the good of the whole family.
The horrifying prospect that we may be facing the extinction of a group of incredible human beings, beautiful, big-eyed and sweet -- those with Down syndrome -- should be cause for mourning.
In North Dakota, it is today illegal to pursue an abortion due to genetic abnormalities. Other states are considering legislation as well.
Ohio lawmakers, for example, are expected to approve legislation that would ban abortions based on the presence of Down syndrome in the developing baby.
“Go to any supermarket or mall and see these families who just happen to have a child with Down syndrome, and they will tell you how fortunate they are to have those children,” Mike Gonidakis, head of Ohio Right to Life, told the New York Times.
“Pretty soon, we’re going to find the gene for autism. Are we going to abort for that, too?”
Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21. Typically the nucleus of our cells each contains 23 pairs of chromosomes, but people who have Down syndrome have additional genetic material.
An early prenatal diagnosis of Down syndrome alerts expectant parents that their lives — and the life of their unborn child — will look different, feel different, be different from what they have known before. In those days after the diagnosis, Gretchen Berquist clung to hope.
“Caring friends and family shared information they had gathered, but I decided to not deal with too much of it early on. I started a file with the information, to look at later.”
For his part, Aric remembers many walks and talks the two of them had together before their son’s birth as they prepared mentally and emotionally for what lay in store.
“We went to all our memories of the other children when they were born, how they grew, what blessings they have been in our lives,” he said. “Gretchen was rock-solid. It was pretty beautiful.”
Gretchen says that during this time, while she was pregnant with Asher, “I learned there are people waiting to adopt a child with Down syndrome. People were even adopting multiples — their experience with their first child with Down syndrome was so good, they wanted another.
"This was so powerful. People who knew the potential problems and pitfalls still understood how enriched their families and lives would become through adopting a baby or child who has Down syndrome.”
They also experienced the sadness of realizing that so many babies with Down syndrome are being aborted simply because today's culture says “a woman’s right to choose” is "empowering."
Asher Berquist was delivered on Sept. 1, 2011, at 12:48 a.m.
Aric recalled holding their son for the first time, looking at his wispy hair and big blue eyes.
“He was beautiful. I felt so proud to get to be the one to hold him, to call him my son.”
Heart problems are a concern with children with Down syndrome, and Asher had bypass surgery within the first three months of his life. After a week in the hospital, he returned home to his family and his three older siblings, Abby, 11, Andrew, 9, and Adam, 2.
Everyone doted on him and they still do. Asher's blessings were evident right away to this close-knit, faith-filled family.
“Asher teaches us so many things,” Aric said. “We are all somewhat wired to be selfish. It’s part of our shared human nature. But Asher pulls you out of that. His personality, his demeanor — they cut right into your soul. I often think what we would have missed out on, and frankly what the world had been robbed of, if there had been no Asher.”
Then he laughed. “To see his siblings with him — it’s pure joy. We are a loud but peaceful family, and we go hard. I see our other kids getting what we as adults get from Asher. He makes you live in the moment.”
Asher and his closest sibling Adam share a bedroom and go to the same school, where Asher receives special education for four hours a day, four days a week. "He loves school and the best part for him is all of the social opportunities with other children," said Aric. "He is also your typical little boy! He loves cars and virtually any ball he comes across. He also loves music and will shriek with delight when he hears a song on the guitar or piano. He wants to be wherever the song is."
Aric and Gretchen have found the community of families with children with Down syndrome to be large and supportive, with several organizations both local and national ready to offer guidance. Their extended family and friends have always offered support and love.
“Asher has taught me to desire what I think God desires for us,” Aric said. “To focus on people. To live in the moment with joy. Sometimes I think we have it so wrong as humans — our focus on things, on achievements; things we can hold. These things aren’t actually going to play a part in our memories when we are older. I live Asher’s lessons on all levels — my work life and my personal life. Be in the moment. Care about others. Accept with a grateful heart so-called 'abnormalities' that, instead of holding us back, open us to a world of experience and meaning.”
Gretchen added, “Asher has brought naturally to his siblings traits I would have tried to infuse them with as a mother. Happiness. Patience. Appreciation. Their eyes are more opened through knowing and loving Asher.”
The National Down Syndrome Association says there are many myths about individuals with Down syndrome. The life expectancy of a person with Down syndrome is not short, but instead approaches that of their peers without Down syndrome.
Most people with Down syndrome do not have severe cognitive delays, but instead mild to moderate delays.
People with Down syndrome are not institutionalized today, as in the past, but instead are active and participating members of their families and communities.
People with Down syndrome hold jobs in banks, corporations, hotels and restaurants, and in the music, sports and entertainment industries. Educators and researchers are still discovering the full potential of people with Down syndrome.
For the Berquists, it’s simple. Asher was their destiny, a gift from a loving God.
“We were meant to have this child and love this child just as he is,” Aric said. “He is our son.”
In some alternative universe, if he and Gretchen were offered a magic pill that would take away Asher’s Down syndrome, would they take it?
"No," Aric replied immediately. "Then he wouldn't be Asher."