Can A Person With Down Syndrome Have A Quality Life?
Elias was two months old when I cradled him in my arms and read a story about a woman who was pregnant with a baby who had Down syndrome. She was broken over the news and had to decide if she would keep her son or terminate her pregnancy. She felt vulnerable. The doctor talked to her about “quality of life”, and she needed to decide right away. She was reaching the point where her baby would be too big and she would not have options.
I remember staring at the pages of the book trying to make sense of what I was reading. I kissed Elias’ face and tried to think about my life without him. My stomach felt sick with the thought. Would my life be better without him? Would I have a fuller life if he didn’t have Down syndrome? Could he have a full life? My eyes were swollen from the tears that kept coming. I knew I was in love with my son, but these questions left me feeling guilty and confused.
This woman was facing the unknown. She would make a decision of life or death based off of research, and how her doctor defined quality of life. I too was facing the unknown. I remember what it felt like to grieve the baby I didn’t have. The baby I dreamed of for nine months was not the baby I was holding. I tried to imagine what the future would look like. Everything was blank. I had no idea what life looked like for a person with Down syndrome.
I felt lost. I held Elias up to my face and whispered into his ear. I think I needed to hear it more than he did. My voice was soft and shaky, “I love you so much, no matter what.” My words were filled with protection when I spoke into his tiny ear. There were many things I didn’t know about Elias, but I did know that I loved him.
After reading about this mother who went through the excruciating process of whether or not she would terminate her baby, I learned that 92% of babies with Down syndrome are terminated in the U.S. In other words, out of ten babies with Down syndrome, Elias was the only one to survive.
When Elias was a baby I read story after story about parents who where faced with the question, “Will they have a quality life?” I wish I could have five minutes to tell them what I know. I wish I could plead with them. I wish they knew how beautiful my life is with my son; how his hugs feel, and what my heart does when he says, "I love you Mommy."
There is a temptation to decide our own definition of what a quality life is. We often confuse comfort and quality. We want to make decisions that give us the most comfortable life possible. We will even go as far as to terminate what stands in our way to keep our plans.
How precious are the hairs on my son’s head. God knows their number. How beautiful are his thoughts. Maybe his thoughts aren’t as quick as another four-year-old, but God knows them—he loves them.
Quality of life isn’t determined by how much my son can do or how high-functioning he is. God decides what quality is. Whatever He forms and knits together is the highest quality. If he gives breath, they are meant to breathe.
Elias was not what I planned for. And even though it hurt, I learned to trust that there was a plan better then my own. Every day Elias wakes up to a quality of life that is beyond what that doctor could have imagined. I have the privilege of walking alongside such a beautiful life. My perspective has changed. My thoughts towards someone like my son are not what they used to be, they have been refashioned by the Maker of life. I am honored to be a mother of a child with Down syndrome.
My heart beats for the woman who feels lost, alone, and fearful of the unknown. I am not a doctor, but I do think I have some important information to share about being a mother to a child with Down syndrome. There is a lot I know that you might not hear in the doctor's office...
...And to the mother who harbors the guilt of a past decision, there is an abundance of grace for you. An overwhelming amount of love. God is the one who holds freedom, It is never too late to be free.
If you are reading this and can relate in some way, I would love for you to connect with me. I believe that Elias wasn’t only put in my life to change me, but also to give hope to others.