The Gift of Down Syndrome

A Father’s Reflection on World Down Syndrome Day

            I prayed for a healthy child and the Lord gave me a daughter with Down Syndrome, a gift to the world and a gift most especially to me. The abortion rate for children with Down Syndrome is tragically high, with countries like Iceland who only have a handful of these precious children in the whole country. Small wonder that a doctor asked my wife if she’d proceed with the pregnancy. My wife did not hesitate with blurting out, “Absolutely!” Perhaps a future parent of a child with Down Syndrome will read this obscure blog and see that a child with Down Syndrome is an absolute blessing and not a burden.

            My precious child, who is still young, has limited abilities. But she has the innate ability of displaying some of the most winsome character traits and effects on others. She is ABLE to be loved and oh how we all love her! She lights up any room and cannot even speak. At her weekly doctor’s visits, she maintains celebrity status with secretaries, nurses, and doctors doting on her. I remember holding her in her early days in the NICU and she was the only child with Down Syndrome there. I was aware of this, and I felt like I had been given a gift that no other parent had been given.     

            I have never met someone with so much joy. She seems like she is always happy and smiling, even if things are chaotic around her. A kiss on her cheek after a nap, ensues a joyful smile that infuses joy and love into me like a sweet tasting medicine for my sinful heart. Happy people are a rarity. She displays a strength that I do not possess. A verse I pray over her often is Nehemiah 8:10, “for the joy of the Lord is your strength.” She can barely crawl, but she is strong because of the joy she has in her Creator. If she can have joy amid the struggles of life, then I can too. Our joy in the Lord and not from this world gives true strength.

            A question that I have had to wrestle with, and it has caused me much turmoil is who will provide for my children with special needs after I die. This question did not bother me too much before even though we have a couple of children on the autism spectrum. Perhaps, these children would fall into line with the many other stories of adults with autism who have grown into independence. But with my daughter, I knew she would need continual care and support. I have presumptuously done the math repeatedly of our age difference and how long I would need to live to care for her. My mentor’s words ring true that I do not know what the Lord will do in her life. I am no Keswick, but what I do know is that I can prepare and provide for her future by trusting that the Lord will provide someone who can financially take care of her. Already, her siblings are fighting over who will get to take care of her when she is older. If not them, God will provide. Like someone doing a trust fall, knowing they will be caught. I too can trust the almighty God to provide for her. Her trust in me helps me trust in God.

            Moreover, she has given me a purpose to live for others and not myself.  As a parent, there is a constant tension of wanting to have personal time and having to care for your children. There is no finish line for my wife and me. We will not be empty nesters. We know that it will never just be the two of us again, and this is okay with us because we have a purpose to serve and to live out this special calling that God has given us. Our daughter forces us to deny ourselves and to live for her, her siblings, and others. In serving others we have incalculable purpose and growth. In serving ourselves, we are miserable and die a selfish life. Praise God that my daughter gives us such purpose.

            I could go on about my daughter, but I must say just one more thing about her. She has given me courage. She has given me a different perspective on life. My experience of fatherhood is very different than what I envisioned and what other dads my age are experiencing. In a way, when we found out we were having a baby with Down Syndrome I felt like it was a death sentence, but more than anything she has been a life sentence. To keep living life, trusting the Lord in making decisions that look different to others.

            The fear behind having a child with Down Syndrome is unnecessary. Yes, most likely the child will need significant medical care and physical therapy. But I have experienced firsthand how the Lord has provided the means to provide for her. He has provided now, so I can trust that He will provide in the future. The care she needs seems like nothing to us because we will forever be indebted to her for everything she has taught us and continues to teach us about our loving Father.

A great book, Help! Our Child Has Down Syndrome, for parents of children with Down Syndrome, here.

A tragic documentary on the country of Iceland, here, and their view of people with Down Syndrome. Sadly other European countries as well as America are following suit. And this video is six years old. Lord, have mercy.