Down syndrome and
Being A Family with Unique Needs
She was five years old and scheduled to have open-heart surgery the next week. She was excited to dress up for church that Sunday, and I almost couldn’t take my eyes off her soft blond curls. Her sweet personality and kind heart were obvious to everyone who knew her. She possessed a special ability to perceive the feelings of those around her, and somehow, she knew just how to make you feel better when you were hurting. She was tender and delicate and seemed so fragile, but at the same time, she exhibited a strength that could not be denied. She could be stubborn when she knew what she wanted or needed or what someone else needed. She had captured our hearts and brought joy that filled our home. I wanted to hold onto every possible moment with our daughter.
So many questions still permeated my mind. But there was also peace. We had asked everything we knew to ask. Was this the best time to do the surgery? Was the surgeon experienced in this procedure? We had asked for prayers from everyone we knew, and a large number of people were praying with us. We knew God held her life in His hands. He held our whole family and our future in His hands.
We believed the surgery would be successful and was necessary. But the possibility of complications loomed, and I had to prepare myself for that potential reality. I took pictures, I cemented her sweet little handprint, I took time for extra snuggles and cuddles at every opportunity.
There didn’t seem to be enough opportunities. The days were zooming by. Her baby brother was only two weeks old and required so much of my time and attention. Her older brother needed my attention too, and his education had been pushed aside so much already. Everything that was not essential could wait until later. Baby shower gifts were still stacked up beside our bed.
It had been a very eventful year. The previous summer, we had decided to begin homeschooling and at the same time expand our family. We knew it wouldn’t be easy, and I had accepted the fact that my life would be filled with providing for the needs of our children. I hadn’t known at the time that open-heart surgery would be part of our plan for the year. Still, God was providing and meeting all our needs. I really only needed to work to the best of my ability, and trust God to take care of everything else. Looking back, I see all the amazing ways He did. I believe all those prayers helped us stay calm in the midst of what could have been chaos. It was God that helped us not just survive but thrive to such an extent that we all have very fond memories of those days. We remember some of the more difficult moments, of course, but what we remember most is watching movies in the hospital together and the giant monkey balloon that grandma Shuie brought us. We remember friends who came to visit and bring gifts and the feeling of knowing that the most important thing was being together. The doctors told us that the quickest recovery time they had ever seen was four days, and we should plan to be there for about ten days. Abby’s surgery went so well, and she responded with such strength and energy, they sent us home on day four. We looked around at other kids that had been in the hospital for months, and we recognized how blessed we were that Abby’s surgery and recovery went so well. We prayed for those parents who were not as fortunate. As we left the hospital, doctors told us that Abby would probably want to rest and be somewhat lethargic for several days. We were instructed to keep her from doing any strenuous activity and not allow anything that might jeopardize the stitches or open the wounds or damage the tender areas that were healing. They had just cut into her chest, opened her heart, and stopped her lungs after all…
Read what happened next, and how God answered our prayers and demonstrated His great love to our family, in our book “Powered by Love.”
We often tell people that we are an average family with some not-so-average experiences. We now have a sign in our kitchen that reads, “As far as anyone knows, we are a nice normal family.” We all find this humorous because we know we’re not “normal,” if there even is such a thing as normal. Down syndrome is one of the main reasons why most people don’t consider us normal. The little girl having heart surgery at age five was our daughter Abby, and she has Down syndrome.
Neither Tyce nor I had much experience at all with Down syndrome, and we had not spent any significant time with any individuals with Down syndrome before Abby was born. The small number of past experiences Tyce had had left him with a negative view of Down syndrome. As the leader of our family and a fighter pilot, he felt that he was supposed to always be in control. Down syndrome was something he could not control. But the fact that he felt out of control led him to turn to God. As he turned to God, he realized that he didn’t have to have all the answers right now, but that God would provide what was needed for each moment.
In the first few weeks of Abby’s life, I attempted to learn as much information as I could about Down syndrome. I read books and articles and sought out organizations that provided resources and help. Some of the information that is widely published about Down syndrome includes these facts:
There are three forms of Down syndrome: Trisomy-21 (an extra 21 st chromosome), Mosaic (a mixture of cells with 46 and 47 chromosomes), and Translocation (where the extra 21st chromosome attaches to another chromosome).
There are no known factors that cause Down syndrome. Down syndrome happens in all ethnic groups, across all socio-economic statuses, and is generally not hereditary. There is no known link to actions of the parents or environmental factors, and aside from an increased incidence as maternal age increases, there are no known causes.
People with Down syndrome have some tendencies to have other medical issues, such as heart defects, respiratory difficulties, digestive problems, etc. They also tend to have mild to moderate cognitive delays and some difficulty with short and/or long-term memory. Most of us recognize the common physical characteristics that are associated with Down syndrome.
As I began to research all the possible effects and complications that might come with Abby having Down syndrome, I began to become somewhat anxious and tried to prepare myself for every possible negative scenario. I have a tendency to want to prepare for the worst. Before Abby was born, I had prepared myself for the worst possibility that I could imagine. I prepared myself to have a child who would die at birth, so again, when she was healthy, I was happy and relieved. But this tendency to prepare for the worst was causing difficulty, because there were so many potential complications and no way of knowing which might affect our family. When I took Abby to visit our pediatrician, he noticed this anxiety in me. He wisely advised me to “just love her.” He reminded me that she is a child first of all, and he helped me put into perspective all the potential concerns that might arise. We would deal with them as they came, and most would never come. What he knew she needed right now is a mother who loved her. I’m so thankful for his wisdom.
God has helped Abby grow into a beautiful young woman who now memorizes lengthy passages of Scripture and speaks to large crowds. She shares devotionals and encouragement in various venues, and she serves in our church and community regularly. She loves to share about God and would welcome the opportunity to speak to your church, school, Bible study group, or organization!
Our family loves to tell about what God has done in our lives. We love to see Abby use the gifts God has given her. It’s our hope and prayer that as we share our story, it will provide positive encouragement for parents, extended family members, church leaders and volunteers, educators, and anyone who cares for someone with unique needs.
Please look for our books, music, podcasts, and other resources, then contact us if you’d like more information. Look for the section of our website with more information about having Abby, Tyce, and/or Julie come speak at your church or event.