My Brother’s Down Syndrome Is Not a Burden

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As Christians, we believe that every single person is precious and valuable, regardless of ability or disability. Yet, abortion rates rise when the unborn child is diagnosed with a disability. In fact, Iceland has seen a drastic decline in people with Down syndrome through their horrific practice of aborting all babies who are diagnosed with it during prenatal testing. Our Assistant Director, Katie Van Dyke, recently spoke with her friend, Jamie Luck, about growing up with a brother with Down syndrome.

Katie Van Dyke: When did your family first find out Josh had Down syndrome?

Jamie Luck: I was 14 years old when we found out that my mom, who was 44 at the time, was pregnant with my brother Josh. It was quite a surprise, as my other brother was 12, and our family of 4 becoming a family of 5 was the last thing anyone expected.

Given her age and the unplanned nature of her pregnancy, my mom’s doctor encouraged her multiple times to consider abortion. After she refused, he pushed her to at least do pre-birth testing to determine if the baby had any sort of disability. Again, my mom refused, saying “We will love this baby no matter what.”

It was not until the day of Josh’s birth that we knew of his Down Syndrome. He had severe jaundice, and the nurses knew immediately. My parents were informed soon after the birth, but they waited until the following day to give the news to my brother and me.

I very clearly remember the three of us gathered around my mom in her hospital room as she calmly told us that Josh was born with Down Syndrome. My mom confidently said that we were going to love him just as my parents loved Jared and me, it would be no different. And our family was GOING TO MAKE IT. Seeing the strength and confidence in my mom that day gave the assurance that it was going to be okay and that God was going to take care of our family.

KV: What was life like growing up with him?

JL: In the early years of Josh’s life, things were much the same as they are with any baby. There is feeding, diaper changing, the excitement when he picked up his head, or laughed, or began to crawl. I knew that Josh was developmentally behind in most milestones, but it didn’t seem to matter to us. We had many happy times together watching him grow and bring us much joy.

Months after his birth, my mom, determined to help Josh as much as possible, began giving him nutrition supplements to aid his body and brain development.

At the age of 6, we started Josh on a program designed by the Institute for the Achievement of Human Potential, an organization that works with families with children who have brain injuries and disabilities. My parents flew to Philadelphia to take a one-week course to learn as much as possible about how to help Josh develop to his maximum potential. From that day forward, my parents worked tirelessly to carry out the program. We as a family spent thousands of hours doing the exercises and activities of the program, and I believe that Josh’s physical, mental, and social skills today are largely due to the efforts of the program. This program not only brought our family together, as it took all of us participating, but also engaged us with friends and neighbors who helped us with the parts of the program that required multiple people. It was a hard, but also sweet time in our family.

As Josh grew older, he was often a spectator at my volleyball games and Jared’s band concerts. I don’t recall ever thinking that his presence in our lives was an encumbrance. My mom never wanted us older kids to feel like our lives were slowed down by Josh, and because of that, she often sacrificed for us so that we could continue with our activities. Before Josh was born, my family was already close, but when he joined us, we spent even more time together, because he brought us together.

I went away to college when Josh was four, but I came home often, and Josh was always there to welcome me with a smile and a hug. I am so thankful for all the years we had together growing up.

KV: What kind of challenges has he and your family faced?

JL: Our first challenge with Josh’s condition came soon after birth. He was born with a hole in his heart, a common condition for babies born with Down Syndrome. After one week in the hospital, the doctors told us that if the hole did not close within two days, Josh would have to have open heart surgery. The thought of surgery on his seven-pound son was almost more than my dad could bear. My dad gathered our family in our living room the night of the ultimatum and fervently prayed for a miracle, asking God to close the hole in Josh’s heart. It was a night I will never forget. Two days later, upon examination, the cardiologist came to my parents and said “Well, I am not sure how it happened, but the hole in Josh’s heart closed up on its own. No surgery is necessary.” That was a monumental moment in the history of my family: I knew for certain that God not only hears our prayers, but still does miraculous things.

Another challenge we faced over the years was the emotional pain of disappointment. It is hard, both as a parent and a sibling, to watch a child with Down Syndrome (or any disability) not be able to do what other children are doing. Josh delighted us with his faces, laughs, quirks, and funny sayings, as all children do. But, there were times when I would see a child of Josh’s age playing a game or engaging with another child in a way that Josh was not able to, and it would sting. You want so much for them to be able to do all the things other children are doing, and yet you know that some things are not possible for them. During these times, we all learned to lean into God for comfort, cast our care on Him, and know, even though we couldn’t fully understand, that God had a higher purpose than we could see.

KV: What have you learned from having a brother with Down syndrome?

JL: Before Josh was born, I didn’t know how to behave around a person with a disability. I wasn’t insensitive to it, I just didn’t know how to handle it. Growing up with Josh has taught me that people with disabilities want what everyone wants: to be treated with respect as you would treat anyone else. It has freed me up tremendously and enabled me to be much more engaging with persons with disabilities. I have a new awareness of the needs of families with disabilities, and how to help them.

Josh is always surprising me with what he understands. I have learned never to underestimate him or his understanding, because usually he grasps much more than I think. This has taught me to set the bar high with him, and talk to him as though he understands, whether he really does or not. Again, people with disability do not want to be treated or talked to differently. They want you to believe they can rise to the occasion, and oftentimes they do. We all need people in our lives who will challenge us because they see us not just as we are, but the potential person we can be.

Most importantly, I have learned that what can seem like a tragedy is a phenomenal blessing in disguise. At 14, I thought my parents getting pregnant with Josh was a disastrous event in our family. Now, I can’t imagine our lives without Josh, nor can I imagine them without his Down Syndrome. We have so much more love, compassion, and blessing in our lives BECAUSE of Josh’s condition. He has not only changed our lives for the better, but spreads the light of Jesus wherever he goes, changing lives all around him.

KV: How has Josh been an encouragement to you? How has the Lord used him in the life of your family?

Apart from my mom, who he is so much like, Josh is the most loving and compassionate person I know. Josh loves impartially, and has never met a stranger. My mom told me once of taking him to the doctor when he was sick, and a very surly man was in the waiting room with them, clearly indicating that he did not want to be bothered. By the time Mom and Josh headed back to see the doctor, Josh had the man smiling and talking, his whole countenance having changed. Josh has that effect on everyone, wherever he goes. He has contagious joy and unending kindness. I have learned from him to look at people without a preconceived or judgmental lens. I have learned how satisfying it is to release my inhibitions and insecurities so that I am freed up to love other people and care about them ahead of myself. I have learned what the childlike faith is that Jesus wants us to have. Josh tells me all the time, when I am fretting about something, “Well, let’s talk to Father about it, and He will take care of it.”

At the age of 57, my mom was diagnosed with a rare form of stomach cancer. After two difficult years of fighting, she went to be with Jesus. Josh was 15 when she passed away. Those two years of her illness were a blur, as all our family’s energy concentrated on Mom’s health.

After my mom’s passing, I was debilitated in every way. She was my best friend, and the pillar of our family. We all leaned on her. Josh was an incredible source of comfort to me in those first years after she died, and still is. He has the same sensitive heart that she did, always aware, despite my efforts to conceal it, when I am upset or discouraged. And somehow, just like my mom, always knows just what to say to encourage me and lift me up.

Josh not only uplifts me with his joy and free spirit, but so many others as well. I have people whom I have never met come up to me after church and say “Is that your brother? Wow, I was so blessed by watching him in worship. He has so much joy.”

KV: There have been studies to show that people with Down syndrome are actually happier than those without it. Can you see this truth in Josh and how?

JL: Josh is one of the most positive people I know. I do not know if he would be the same without Down Syndrome, but I do know that if you need someone to make you smile, he is your man. There is a misconception that people with mental disabilities do not feel to the same degree negative feelings such as heartache, grief, and disappointment. That is not true, they feel those things as deeply, and sometimes more deeply, than a person without any intellectual challenges. Josh was just as debilitated by our mother’s passing as we all were. However, because of his immense capacity to love and his great faith in God, Josh is always looking up. Some would say he is more carefree and happy because he is not burdened by all the responsibilities of life or doesn’t fully understand the circumstances. This may be partially true; but I also think that he does not live in the fear of the future that most of us do- he lives in the moment. Josh and his friends with Down Syndrome are happy because they live in the present and enjoy it. They have the concept of time, but they are not bothered by it. Most of us are living in restlessness today and in anxiety about tomorrow. People with Down Syndrome seem unbelievably able to do what the rest of us wish we could- enjoy the present and not worry about the future. They have received a real gift.

KV: What would you say to someone who thinks that a disability is a justified reason to terminate a pregnancy?

JL: I know firsthand the fear and disappointment that comes with discovering your child has a disability. It is scary to look ahead and wonder what lies in front of you. And the easy way to seemingly eliminate the fear is to terminate the pregnancy, because you think it will be too hard to bear, or that the child’s life won’t be full and meaningful. However, none of this is true when you know God is with you. He does not make mistakes. He does not create life for no reason, nor does He leave any of us to make it on our own. Just as He has a specific purpose for you, He does for each person with a disability as well. If that life is terminated, we have robbed God of His plan in that life, and the blessings He has for us THROUGH that person’s life. If my mom had aborted Josh as her doctor encouraged, my life would never have known the joy, love, laughter, happiness, and comfort that Josh has brought to it. A disability is only a negative when we choose to see it as such. If the world could see that all life is valuable, we would all be different, and better-off, people. Please don’t cut off all the blessing that could be yours by choosing to end a life.

KV: What encouragement would you give to a woman who has just found out her unborn baby has Down syndrome?

JL: First, I would say that it is okay to be sad. You had the dream of a baby without a disability and that dream is now gone. It is okay to grieve that dream. Don’t feel badly about yourself for feeling disappointment. But, I encourage you to start dreaming new dreams for yourself and your child and your family. Every child, with or without disability, is a marvelous creation with unknown potential. Who knows what your child could become or the things that he could do! Your baby could be the binding tie of your family, or the delight of your life, or the comforter you didn’t even know you needed. He could champion a cause that brings people freedom and purpose. You can be sure that God has strategically given him to you, and He only gives good gifts.

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