How my sister with Down syndrome changed everything
By / Apr 20

Obedience to God is part of the Christian life. When we become followers of Jesus, we set aside our former self and take our place behind Jesus. He leads us step by step. As painful and tumultuous as the road may be, we set our sights on him as our Lord and Leader. For my family, this call to obedience was put to the test with a diagnosis of Down syndrome for my younger sister. I was almost 3 years old, so the trial that my parents endured in those early months and years was lost on me. 

Choosing life when obedience is hard

I can’t imagine what my parents felt as they heard doctors tell them my sister would never walk, never talk, have severe disabilities, and would likely suffer major heart problems. They were terrified at the life their child would have. As they processed this diagnosis, they made a decision to choose life.

This child was still a human being, which meant that her life was worth living even if the road ahead turned out worse than the doctors could imagine. It was easy for my parents to choose life for my sister because they believe life is precious and created by God, but this decision was through tears, heartache, and prayer. Yet, my family was forever changed by my sister, Amanda. 

In the early years, my parents faced uncertainty about her health and development, always wondering what she would be able to do with her life. They had to fight not to compare her to other kids her age and accept that her life would look different than their other two daughters. On top of this, they worried about her safety, how others treated her, if she was being bullied or made fun of without being able to tell my parents, and if she was being included with the other kids. 

As her sister, I learned to be less needy as a child so that my parents could give Amanda the attention she needed. No one forced me to make this decision, but it was my natural response to a sister who needed special care. Though this learned independence was not all bad, I did have to relearn as an adult to ask for help and be vulnerable with my needs. I also felt and still feel personally wounded when I hear jokes about those with special needs, and recoil when the word “retarded” is used in name-calling. 

Amanda is now an adult, and the difficulties of her life are not all over. She will never have the “normal” life that my youngest sister and I had. She won’t go to college, get married, or have a big social life. It is difficult for us, as her family, to know that she won’t do the same things that other 20-somethings do. 

Gifts from my sister

One could read these difficulties and ask if her life was really worth preserving. Did my parents make the right decision? Were the trials of delayed speech, the staring from people in public, the struggles with the education system, and the extra attention she required worth it? Wouldn’t it have been easier if Amanda never existed?

Easier? Yes. Absolutely. There is no way to deny that my family would have an easier time without her. But ease of life and lack of trials is not the point. The point is that Amanda is a person, and all people are worth preserving at any cost to those around them. 

What I haven’t told you yet is that Amanda made our lives better — in a multitude of ways. 

She teaches us about love. Amanda loves her family and her friends unconditionally. When she meets another human, she treats them with the honor and respect they deserve. All aspects of human life are incredible to Amanda. She is thrilled when someone has a baby, gets married, starts a new job, goes on a vacation, or even eats at a restaurant or visits a bookstore. Whether it is my engagement announcement or a picture I took of a tree, Amanda leaves a comment on social media that says “that is amazing Allyson” or “I can’t believe you did that – that is so cool.” And you know what is incredible? She actually means it. 

She teaches us about gratitude. Beyond her love of others, she has the most pure and grateful outlook on life. When she was younger, a single Reese’s peanut butter cup would make her so excited. At Christmas, she is the most thankful of anyone for what she receives. The smallest, most simple gifts or activities bring delight to her face and, “I can’t believe it!” to her lips. 

She teaches us about humanity. When she was younger, she played softball and was an amazing catcher. As a teenager (and even as an adult sometimes), she will roll her eyes at my dad’s jokes or my mom’s requests that she doesn’t like. She remembers details about her favorite actors and can tell you exactly when Dwayne “The Rock” Johnson was born, where he is from, and what his favorite foods are. She makes fun of us, laughs at silly things, goes to her dance class, and tells me about the annoying people she encounters. She hugs, cries, gets mad, does her chores, writes in journals, and eats her favorite foods. Amanda is a person, a human life, not all too different from you and I. 

She affects the lives of those around her. If you were to divide Amanda’s life between the joys and the trials it brings, the joys would break the ground compared to the trials. Joy incomparably outweighs trial. Amanda enriches the lives of those around her. In her softball days, opposing teams would cheer for her when she got a hit. At school, she knew all the “cool kids” and would receive a string of high-fives from all the athletes. Around the dinner table, her belly laugh can brighten your day immediately. Everyone she meets is her new best friend, and she will care deeply for all she knows. You cannot walk away from an encounter with Amanda and not be blessed by it. 

Life may have been easier without Amanda, but it would not have been better. She is a daughter of the Most High God. She was knit in my mother’s womb (Psa. 139), fashioned by God, and her life has been all grace. My parents chose life, and they chose obedience to God. For every hardship we have endured as a family, the grace of God shown through Amanda’s life outshines it all. 

Following behind Jesus in obedience is worth every step. The kindness of God might not always look like we expected, and his blessings might not always be obvious to us. But faithful obedience to him will always, always, always result in his grace meeting us. One day, our faith will become sight when we meet Jesus in glory. He will be our prize, and he will be our reward. 

5 facts about Down syndrome
By / Oct 23

October is Down Syndrome Awareness month, a time to both learn more about this common disorder and to promote the acceptance and inclusion of people with Down syndrome.

Here are five things you should know about the condition:

  1. Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21. Most people have two copies of this chromosome, while those with three copies of chromosome 21 develop the condition known as trisomy 21. (The name Down syndrome came from the English doctor John Langdon Down, who was the first to categorize the common features of people with the condition.) This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome.
  2. The Centers for Disease Control in 2014 estimated that about 6,000 babies are born with Down syndrome in the United State, which is about 1 in every 700 babies born. In some countries, prenatal screening and liberal abortion laws combine to reduce the number of children born with this condition. For example, in Iceland in 2019, 4,452 live babies were born. But according to their government, on average, during the past 10 years only two to three children have been born each year with Down’s syndrome. That is a rate of between 1 in 1,484 or 1 in 2,226 babies born—roughly two to three times less than the rate in America.
  3. Compared to children without Down syndrome, children with the condition are at higher risk for numerous afflictions, including hearing loss (up to 75% may be affected); obstructive sleep apnea, a condition where a person’s breathing temporarily stops while asleep (between 50 -75%); ear infections (between 50 -70% may be affected); eye diseases, like cataracts (up to 60%); heart defects present at birth (50%); intestinal blockage at birth requiring surgery (12%); iron deficiency anemia (red blood cells don’t have enough iron to carry oxygen to the body) (10%); hip dislocation (when the thigh bone slips out of the hip socket) (6%); and thyroid disease (a problem with metabolism) (4-18%). Older adults with Down syndrome have increased risk for developing Alzheimer’s disease.
  4. The life expectancy of people with Down syndrome quadrupled between 1960 and 2007. In 1960, on average, persons with Down syndrome lived to be about 10 years old. In 2007, on average, persons with Down syndrome lived to be about 47 years old. Many factors have contributed to the increase, but the major change was the number of infants with Down syndrome that die before 1 year of age has declined over time. For example, between 1979 and 2003, the rate of death during the first year of life declined from 8.5% to 5.0%, a decrease of about 41%. For comparison, the rate of death during the first year of life among all babies in the general population declined from 1.5% during 1979-1983 to 0.9% during 1999-2003, a decrease of about 40%.
  5. Having a child with Down syndrome has some surprising effects on the family. Mothers of individuals with Down syndrome typically exhibit better psychological well-being profiles in comparison to mothers of individuals with other intellectual and developmental disabilities. There is extensive evidence that mothers of young children with Down syndrome experience lower levels of stress, more extensive and satisfying networks of social support, less pessimism about their children’s future, and they perceive their children to have less difficult temperaments. A major study also found that divorce rates were lower (7.6%) for families of children with Down syndrome as compared to 10.8% in the population group with nondisabled children and 11.25% for families of children with other congenital birth defects. 

A study conducted in 2011 interviewed 282 siblings of people with Down syndrome. The respondents mentioned a variety of life lessons learned by having a sibling with Down syndrome, According to the study, “The most frequently cited lesson was an enhanced perspective on life — that life was good in many ways . . . These older brothers and sisters mentioned that they gained a deeper understanding and appreciation for human differences.” The vast majority of brothers and sisters describe their relationship with their sibling with Down syndrome as positive and enriching.