The door opens and several sets of bright, dazzling eyes look at me. The Park girl tribe is the best welcoming committee in town. Little hands lead me inside a house of sunshine. Something glows a little extra here. I had a feeling something extraordinary was behind the joy pouring out of the Park house.
In fact, baby "Bern the Brave" possess this little something of extra herself. An extra chromosome.
Last year, Trista Park and her husband found out they were expecting their third beloved little girl. Nineteen weeks into the pregnancy, the doctors approached them with startling news. Her sonogram did not reveal the development of a four chambered heart or a nasal passage. Essentially, the Parks were told there was a high likelihood the baby would have a heart problem and Down Syndrome. The list of suggested next steps included termination, amniocentesis, and blood tests. Firmly, Trista voiced "No. We are keeping this baby." However, the question of amniocentesis was a little more murky.
To explain, an absent nasal passage is a marker for Down Syndrome (DS). It is also common for babies born with heart defects to have DS. According to the Mayo Clinic, amniocentesis is the process of surgically extracting a small amount of the amniotic fluid which surrounds the baby in a woman's uterus. The fluid is then tested to establish whether certain genetic disorders, like DS, are present. The procedure carries some known risks, including miscarriage. Although the rate of miscarriage is reportedly low, the possibility is still very real. "I felt like 'the Lord is going to give you the baby he wants you to have'." Trista wrestled with the decision and declined amnio up to 22 weeks. After then, the option was removed. They went forward with a blood test which confirmed a 99% chance of DS with a 100% chance of heart defects.
"I'm not grieving her, but the loss of the plans I had for my life. There was so much unknown...how's this all going to happen?...I only knew a pinch of what life would be like." It sounded like Trista was grieving most of all a loss of Bernadette's potential life plans as well - what could heart problems and DS possibly mean for her? Many around her tried to comfort her, by saying they understood or she would get through this. Trista began to realize DS wasn't a temporary season Berndatte would get through, it would be apart of her story - apart of their story.
At 38 weeks old, October 4th 2016, Baby Bernadette Park arrived - which so happens to be DS awareness month. Within a week, Bernie traveled to San Francisco to meet with a cardiologist. While assessing her Atrioventricular Valve Defect (aka very large hole), they found a second defect - a Coarctation of the Aorta (a narrowing of the aorta). So began a spiraling two months spent living in the hospital. The Park family was forced to split time between their daughters at home and new baby in the hospital, throughout Thanksgiving and birthdays.
Yet, even a small ray of sunshine pervaded a dismal NICU. Baby Bernadette's fiery red hair was just long enough to twirl into a Mohawk. The nurses treasured the Park family and their Christian cardiologist was one of the best heart surgeons in the country. Prayers, encouragement, and support flooded in from their family and church. On November 30th, Bern had her second surgery, which was an open heart procedure. Within twelve days, she gained weight and recovered quickly. "She was like a different baby!" The family was able to come home with her, well in time for Bernie's First Christmas.
Still, returning home didn't mean returning to normal life. "Nothing felt 'normal.' Now we had to figure out our new normal. It was a huge adjustment period!" Recovery physical therapy, feeding therapy, education about DS, etc. became apart of their new normal. With each obstacle, came a chance to break down or overcome. After Bern contracted a cold in March 2017, they found themselves back for a short while in the PICU and in October 2017 they were displaced from the Sonoma County Forest Fires. The Park family has resiliently pressed on, strengthening their relational bond as a family unit. Baby Bern may not be society's definition of 'normal', but she is a well loved and joyous being. "Society boxes people in. People like to say 'Oh you have DS - you can't do that! They are individuals too!"
"I do wish I could go back to my pregnant self and say 'It's going to be fine!' Down Syndrome is one of the things I love about her most...It's not bad, it's just different." Trista is passionate about her love for her daughter. She loves her laughs, her head of ginger hair, and her extra chromosome. She loves these things which will make Bernadette unique, brave, and faithful.
Throughout my time at the Park house, Bernie's older sisters darted from room to room, showing us their newly colored pictures. Bernadette was smiling along, enjoying time with her mom and feeding. I took it all in, every detail, every smile, every scribbled note. I felt like I was witnessing a gift. To sit and listen to Trista, as she told Bernie's story, I all at once was aware of the pain she suffered, but the joy she chose to live by. This joy permeated every element of their family. Even a peaceful moment of Bernie taking her bottle was a moment of celebration and gratitude. It was a symbol of long months of therapy and effort, with a tremendous result. It's these tiny blessings, or a as a friend of mine used to call them, little victories which make life so abundant in the Park household. The Park family is daily celebrating life! And not just life as they wished for, but life as it has come. Trista's lifesong is marked with hope for the future, no matter how uncertain, and gratefulness in the present.
"I'm not strong, and I don't feel strong...but God is strong and He is carrying me."
To read more of Trista and Bernie's story, visit Trista's blog "Beauty in the Brokeness" at tristapark.com or follow her on Instagram @mrs_t_park.