Fearfully & Wonderfully Made

Written by Kara Humphrey. Posted on October 1, 2022 in Community & Culture

Will it be a boy or girl? Who will they look like? How big will they be? Will I be a good parent?

When a child is born, eager moms and dads experience an array of emotions elicited by few other days in their lives. Hearing that first cry brings a sigh of relief as they look to the medical professionals surrounding them in the busy delivery room to give the “all is well” thumbs up.

Eight years ago, Kristi and Clint Lachowsky, who were about to be parents for the second time, anxiously anticipated every emotion that would accompany the addition of another daughter to their family. The previous nine months had been full of all the routine prenatal testing ordered by Kristi’s obstetrician, and things seemed to progress smoothly. However, when the day finally arrived, the Lachowsky family received news they were not expecting.

As a registered nurse, Kristi worked in the newborn nursery at CHRISTUS St. Michael, so it was her close friends and coworkers who supported her for the delivery. “My favorite story is Mallory’s birth story,” she said. “We did not find out Mallory had Down syndrome until the moment she was born. The doctor knew immediately. The whole delivery room fell silent, and everyone was in complete shock; the fear of the unknown can just leave you in shock. I cried the first time I held her, and I even told her I was sorry she had Down syndrome. It was my sweet, amazing friend who looked at me and said, ‘Don’t you apologize for that! She is exactly who God wants her to be.’”

Down syndrome is a genetic disorder that occurs when abnormal cell division causes a full or partial copy of chromosome 21. The severity of Down syndrome varies from person to person but can cause intellectual disabilities and delays and other medical conditions, including heart and gastrointestinal disorders. It is the most common genetic chromosomal disorder and affects approximately one in every one thousand live births worldwide or 3,000-5,000 children in the United States each year.

Often Down syndrome is caught prior to birth, as there are multiple prenatal screening and diagnostic tests that can be performed. These tests are not all conclusive, with some simply measuring the probability of a Down syndrome diagnosis. Other tests, however, including chorionic villus sampling (CVS) and amniocentesis, which both carry some risks, are nearly 100% accurate in diagnosing Down syndrome, according to the National Down Syndrome Society. (National Down Syndrome Society, 2022)

“One of the biggest questions we got was ‘Did you do prenatal testing?’” recalled Kristi. “We did prenatal testing, and it all came back negative for Down syndrome.” Maybe the missing prenatal diagnosis was a blessing in disguise for the young family. “Looking back on it now,” she said, “it would not have mattered what the test said, and I believe God spared us the anxiety of knowing beforehand, so we could completely enjoy the pregnancy.”

As with most life-altering developments, especially those that seem to come with no warning, initially it is hard to know how to feel. In the early days of Mallory’s life, there was a bit of soul searching required for Kristi and Clint, as they needed time to wrap their heads and hearts around the truth of their daughter’s unexpected condition. “Of course, the feelings we had immediately following Mallory’s birth were mostly negative, full of fear, anxiety, and questions about the unknown. We, as a family, did not know what to expect. None of us had ever been around someone with Down syndrome. I will say, for the first few months we felt all those emotions, but we also felt such love and protectiveness, and we were just 100% in love with this beautiful blessing God gave us,” Kristi said. “Family and friends were just as shocked as we were. Some would say to us they were ‘sorry,’ others would say, ‘it will be ok,’ but most just felt awkward, not knowing what to say. After the initial shock of her diagnosis, family and friends were very loving and accepting of her. As a matter of fact, our families’ and friends’ strong faith pulled us through when we just could not seem to understand everything we were feeling at the time.”

Because children with Down syndrome are prone to an assortment of other health issues, the Lachowsky’s most immediate concerns revolved around making sure their daughter was thoroughly screened. Kristi recalled, “We had extensive lab work done and cardiology workups. Eventually, we were discharged home on day three and were instructed to follow up with a cardiologist. The next six months were stressful, and at times emotional, but also, they were times of such joy with our beautiful baby girl.” However, like 40-60 percent of all people with Down syndrome, Mallory fell into the category of those who have a congenital heart defect. So, at that six-month mark, she had open heart surgery. “Of course, we stressed and worried, but Mallory showed out and did awesome. We were at Arkansas Children’s Hospital for a week and then back home. She recovered fast and did well.” Children with Down syndrome also frequently have speech difficulties because of low muscle tone, so the Lachowskys started speech therapy for Mallory right away, and “though she is still difficult at times to understand,” Kristi joked, “the girl never misses a chance to talk now.”

The Lachowsky family is a tight group of five, including Clint, who has worked for the Texarkana Texas Fire Department for 17 years and has co-owned Lach-On Construction for the last eight years. As a registered nurse, Kristi currently works for Precision Spine Care. The couple’s oldest daughter, Ally, is now ten years old and is a fifth grader at James Bowie Schools. “Mallory’s relationship with my oldest daughter is a strong bond,” Kristi said. “Through Mallory, she has learned what loving and accepting others is all about. She is very protective of Mallory and is such an awesome big sister.” Since Mallory’s birth, the family has grown by one more when little brother Daniel, now three years old, was added to the mix. “Mallory’s relationship with my youngest, Daniel, is fun to watch. He does not know she is different; therefore, he does not cut her any slack in their sibling fights. They are very close and love to get into everything together. I would say all three of them have such a special bond and absolutely love each other to the fullest.” While the birth of a child with Down syndrome was not something the family expected, it has turned out to be an eternal blessing.

“The last eight years have been absolutely amazing for our family,” Kristi said. “Mallory was the perfect addition. I wish I could have told that to myself when we were starting out—to just have faith and trust God through this process. It is hard to believe I ever felt so emotionally defeated when she was born. Now, looking back, I see God placed her in our lives at the perfect time; doesn’t He always? Through Mallory, I have learned so much. She has taught me that the fear of the unknown is okay. Ultimately, we are not in control of anything or anyone, which strengthens my faith and trust in God. Sure, there are some moments of stress and anxiety, but Mallory genuinely loves life, and she lives it to the fullest. She loves everyone unconditionally and judges no one. And anyone who knows her knows she is the life of the party, and will give you the biggest hugs when you need them.”

A normal day for Mallory includes attending all-inclusive classes at James Bowie Elementary, where she has been enrolled since Pre-K. She has a great group of friends who have loved and supported her since day one. She receives speech therapy and occupational therapy through the school district with “wonderful therapists” who have also been with Mallory since the beginning. She is currently in second grade, in a classroom “where she is loved,” according to her grateful mother. “She is pulled out for reading and math because she needs just a little extra help in those subjects… They say it takes a village, and I could not ask for a better village for Mallory,” Kristi said.

In the 1980s, October was designated Down Syndrome Awareness Month. It is a time to celebrate people with Down syndrome and recognize all their exceptional abilities and accomplishments. Locally, the Texarkana Down Syndrome Society helps connect and support the families of those with Down syndrome. They host events throughout the year to bring families together to celebrate their loved ones. This year, on October 8, from 10:00 am-2:00 pm, they will be “Rockin’ That Extra Chromosome” through a free event that will include a fun day of activities, music, cotton candy, and, of course, the Awareness Walk. Mallory’s team of supporters at this year’s walk will be known as Mal’s Pals and will each be sporting t-shirts with the verse from Psalm 139:14 that says, “I am fearfully and wonderfully made.” It is the perfect declaration to describe these precious souls with Down syndrome who bring such joy and love to those they meet.

It is our differences that teach us and help us grow, and just like Mallory’s family, if we let it, looking at life through the eyes of a person with Down syndrome can teach us all so much. “Mallory is such a blessing, and she has such a beautiful soul. Through her,” Kristi said, “I have learned how to really love and accept everyone. She ultimately changed my perspective on life. She has shown me how to love unconditionally and to go with the flow. When I see things through Mallory’s eyes, I see the way God wants us to be, living with joy, loving passionately, and dancing like nobody is watching. (And those who know Mallory know she loves to dance!) Wouldn’t the world be a better place if we all had some of that in us?”

October is Down Syndrome Awareness Month

21 Things to Know About Down Syndrome

1. People who get to know someone with Down syndrome often develop a strong capacity for love and acceptance of someone who is different.
2. People with Down syndrome can have jobs and be productive and contributing members of society.
3. National Down Syndrome Society does not like or use the word ‘retard’ or ‘retarded.’ Period. (www.r-word.com)
4. People with Down syndrome are smaller in stature. Girls average a height of 4’9” and boys 5’2”. What they lack in size, they make up for in awesomeness.
5. Approximately 45% of people with Down syndrome have a single palmar crease in their hands. This results from hypotonia as the hand was not held in a tight fist while the baby was growing in the womb.
6. There are three ways in which Down syndrome can happen, depending on how the cells divide: nondisjunction (approximately 95%), translocation (4-5%), and mosaicism (less than 1%).
7. IQ scores cannot capture a person’s potential, keep ‘intelligence’ in perspective.
8. 80% of babies with Down syndrome are born to women under 35 because this age group gives birth most frequently.
9. Down syndrome is named after John Langdon Down, the British doctor who fully described the syndrome in 1866.
10. An estimated 90% of parents who receive a prenatal diagnosis of Down syndrome will choose to terminate their pregnancies.
11. Approximately 40-50% of babies born with Down syndrome will have some type of heart defect, often easily corrected with surgery. But be careful; they can steal your heart.
12. Down syndrome is also known as Trisomy 21 or T21 because Down syndrome happens when a person has three, rather than two, copies of the 21st chromosome.
13. People with Down syndrome are not ‘always happy.’ They have feelings just like everyone else.
14. People with Down syndrome can lead happy, independent, and successful lives. They can become TV stars, play symphonies, learn to drive, and even climb Mount Everest! Don’t count them out.
15. Approximately 1 in 700 babies will have Down syndrome, making it the most common chromosomal condition. This is true for all races, nationalities, ethnic groups, and classes.
16. In 1983, the average life expectancy of a person with Down syndrome was 25 years old. Today, it is 60.
17. People with Down syndrome cannot be ‘more Downs’ than another. As with everyone else, each person with Down syndrome has their own strengths, weaknesses, talents, and abilities. The syndrome affects each individual differently, but what is the same: people with Down syndrome will make your heart happy!
18. We prefer ‘people first’ language. A person has/with Down syndrome. Not a Down’s person or the Down syndrome kid because Down syndrome does not define who they are.
19. Babies with Down syndrome have low muscle tone (known as hypotonia), so it will take them a little longer to talk, walk, and eat the same foods as others. They work extra hard, and they get there.
20. People with Down syndrome will help make you a better person.
21. There is not a “spectrum” of Down syndrome. People cannot have mild or severe Down syndrome. You either have it, or you don’t.

SOURCE: National Down Syndrome Society, ndss.org, About Down Syndrome (2022)