I got a call from Cale Clark the other day. After reading a controversial article from The Atlantic Magazine, The Last Children of Down Syndrome, he wanted to know what it’s like to raise a child with Down Syndrome. What was it like to get that diagnosis? What’s our life like now? And how do we deal with the uncertainties about our son’s future?
Our family’s experience is only one data point, but it is an experience shared by many families blessed to have a child with T21…
No time to listen to the show? Here are my notes:
Cale: What did you think about Sarah Zhang’s article, The Last Children of Down Syndrome?
Mary: On the surface, the article seems well balanced. Sarah Zhang interviews parents of children with T21 and women who chose to abort their child with a DS diagnosis. She raises a lot of thought-provoking questions about eugenics, a world without people with special needs, and the power of parents to decide whose lives have value.
Unfortunately, Zhang still believes that a woman’s right to choose whether or not to end the life of her child trumps everything else. On a large scale, she implies that people with DS have valuable lives and we need to reconsider how we value others. On a personal level, however, she insinuates that a woman should have the right to choose between life or death for her unborn child, and we should not judge her because the decision is painful, difficult, and too often wrought with guilt. Well, we shouldn’t judge the woman — a prenatal diagnosis of DS is often accompanied with tremendous pressure to abort. But we can definitely judge the act; to take the life of an innocent child, born or unborn, is intrinsically evil. There is nothing magical about going through the birth canal that suddenly makes a baby human or worthy of life. So preborn children need laws to protect their right to life.
Anyways, it’s a very morally relativistic article. So, while she raises important questions, her questions remain questions — the answers elusive and unclear. This is because she is looking at the issue without the light of faith.
I have often thought that the issue of abortion cannot be separated from faith. The reason abortion is evil is that each person is made in the image and likeness of God, endowed with the dignity of a child of God, and lovingly created by God for an irreplaceable purpose.
Because of this, we cannot deny a person his/her fundamental right to life. To say, “You are not worthy to live, or your life is not worth protecting and preserving” is to deny a person his/her inherent dignity as a human person and as a child of God.
This, to me, is the saddest thing about any abortion, and particularly the selective abortions of babies with a DS diagnosis. I think, in many cases, parents who choose to abort a child with DS just don’t know — they have no idea — what a precious, wonderful, beautiful life they have ended. Instead, when parents are presented with a DS diagnosis, they are overwhelmed with worst case scenarios and all the things their child may never do.
Cale: Tell me about Christopher’s diagnosis. How did you get it, and what was your reaction?
Mary: So, my husband and I chose not have prenatal testing because we knew that no matter what, we were going to love and raise this baby. All of his ultrasounds indicated a healthy, normally developing baby, so even though I was in my forties, we didn’t worry about having a child with Down.
The diagnosis came the day after he was born. During Christopher’s check-up, the pediatrician noticed several markers for DS and told my husband he was 98% sure the baby had T21. I wasn’t there in the nursery when the doctor told my husband this; I was in the hospital room surrounded by my other children who were waiting excitedly to meet their new baby brother. When my husband returned with Christopher from the nursery, he handed the baby to his siblings, and as they gathered around him, my husband whispered in my ear, “The doctor says he has Down Syndrome.”
Well, the moment Christopher was born, I had wondered it; I had sensed he was different from our other babies. So, I wasn’t surprised. I wasn’t even upset. But then my husband continued, “He has four holes in his heart and pulmonary hypertension. A nurse is coming to take him to the NICU”. That’s when my heart sank.
Cale: How did you tell your kids, and what was their reaction?
Mary: We told our kids almost right away, because a nurse was coming and they would want to know why she was taking him to the NICU. They took the news very hard, not so much because he had DS but because the baby had holes in his heart — that was scary for them — and we didn’t know when we would be able to bring him home. Our kids were so disappointed; some of them cried. But our thirteen-year-old had a beautiful perspective. She said, “His condition is our sugar-coated cross.” It was a cross because they could not bring him home yet, but it was sugar coated because he was so sweet and they loved him so much already.
Cale: So what happened next? …
Mary: The next day, my OB-GYN came in to see me. She had heard that Christopher was diagnosed with DS, so being the wonderful Catholic doctor that she was, she said, “God must have great confidence in you to entrust you with one of his most special children.”
I’ll always be grateful for those words, and I wish those were the words every doctor would say when delivering a DS diagnosis. Because that’s the truth of the matter. My mom likes to say “Each child God gives you is a vote of His confidence.” All the more so with a child with special needs. God creates each person with a purpose. In a society that places too much value on achievement and success, one might wonder what would be the usefulness and purpose of a person who is weak, has a lower I.Q., or is more vulnerable? Wouldn’t such a person be a burden on society?
We have to look at such a person with the eyes of faith: perhaps God created this person to teach us to be more compassionate, more generous and patient. Perhaps God created this person to show us how to live more simply and to enjoy the little things. Perhaps, and I think this is the case with our Christopher, God created this child to bring great joy to the people around him. To cooperate with God in raising such a child is a privilege, and it’s why many parents of children with DS call themselves, “The lucky, the few.”
Anyways, my OB reassured me that everything was going to be okay, that his pulmonary hypertension would resolve and that the holes in his heart might even close up on their own.
This was the beginning of a great outpouring of love and support that upheld us during the next three and a half weeks we spent with Christopher in the NICU. Those were long, sleepless, anxious days and nights, but we were inundated with love and prayers. People around the world were praying for Christopher, and sure enough, the hypertension resolved, he weaned off the cannula, and two holes in his heart closed up on their own.
Cale: So now Christopher is 3 1/2. What has your life been like raising a child with DS?
Mary: The day we finally brought Christopher home, all of us nearly burst with happiness, and ever since he has brought so much joy to our family. This is not to say that he is the perfect child and our life is without challenges. The first year he had a lot of doctors appointments. These were time consuming and made homeschooling my other kids more challenging. But we managed, and we managed with joy because he was.. and is… so lovable. Now, most of his health issues are resolved. He needs speech and occupational therapy, and he has some developmental delays, but in all other respects he is a typical three year old — he’s affectionate, fun-loving, and at times tyrannical.
During those dark days in the NICU, I wondered how having a sibling with DS would affect my other kids. Would our lives be so consumed with his health care and special needs? Would my other kids still get the love and attention they needed? I had no idea what a gift Christopher would be to his siblings and what a gift they would be to him. My other kids have grown to be so much more compassionate and self-sacrificing. But more importantly, from their perspective, he is just fun to be with. Teenagers, you know, can be so myopic. Christopher pulls his siblings out of themselves… they forget that they are moody or stressed or annoyed when they’re around him.
He also brings great joy to the people in our community. Before COVID, where ever he went, he’d smile and wave at people. Once at a doctor’s office, there was a long line of people waiting to see the doctor… mostly elderly. Christopher went up to each one of them, put his hands on their knees and smiled at them. You should have seen the faces light up as he did this.
At our parish, he’s like the local rock-star. So many people know and love him. Before COVID, the Archbishop dubbed him the “Mayor of the Narthex”, because he would greet every one after Mass. The same goes for our neighborhood… we know so many more of our neighbors now because of Christopher.
I know our family’s experience is only one data point. I know many other families with a child with DS endure far greater difficulties than we do. I know of one family with a four month old baby girl with DS who underwent heart surgery just this morning. Can you imagine the anxiety her parents must be experiencing? Please pray for her – baby Lillian. I also know families who have a child with a dual diagnosis of DS and autism, and families who have had to fight hard legal battles to get their children the services they need. Raising a child with DS has its challenges, but it also has its joys.
I’ll give you an example. Shortly after we brought Christopher home, an old homeschooling friend brought over her 13 year old daughter, Rose, who has T21. As an infant and young child, Rose had had multiple heart surgeries and blood transfusions. It was so reassuring to see this girl now so healthy, talkative, and playful. It was even more reassuring to see how joyful her mother was. She literally radiated with joy and love for her daughter. And to me, it drove home a point I have often thought: that the greater our ability to suffer with love and faith, the greater our capacity for happiness.
Cale: Do you ever worry about what will happen to Christopher as he gets older?
Mary: The thing about parenting is that it’s a very risky thing… we’re at risk of getting our heart broken. We do the very best we can for our children, but the future is always uncertain. Only one thing is certain: at some point our children will suffer and we will suffer with them. Maybe it’s illness, maybe its struggles with studies, difficulty making friends, getting cut from baseball team, rejection, frustration, or whatever… There is no perfect child and there is no perfect life. We all have challenges to face at some point.
When you have a child with DS, that reality hits you hard and fast. Again, faith is the answer, faith that God has a plan for this child, and confidence that He will give us all the graces we need to overcome or endure any difficulties that arise. Raising Christopher, I would say we all — siblings and grandparents included — have found untapped reservoirs of love and strength we never knew were there.
So, no, I don’t worry. We live day by day. I really believe God gave Christopher to us to bring us great joy. Parenting can feel like such a heavy responsibility — you have to give your kids a great education, feed them healthy food, make sure they have a good social network, teach them to drive, get braces on their teeth, help them through college… there’s so much pressure on parents nowadays.
With Christopher, I feel as if God is saying, “Relax. Just enjoy him. All your other kids are growing up so fast. Marvel at this slow-motion unfolding of childhood and look at the world through his eyes: with wonder and simplicity.
Cale: How has having a child with DS affected your faith?
Mary: Chris and I love all our children deeply and unconditionally, but I have to admit we have a very special love for Christopher. His very neediness and dependency elicits from us a special tenderness and affection. We can even say that we love his little extra chromosome, for although it causes suffering and challenges, it is a part of the marvelous person that he is.
I have often thought that our love for Christopher is a very dim reflection of God’s love for us. Spiritually we all have special needs. Because of original sin we are all spiritually disabled. It has weakened our will and clouded our intellect. It has rendered us prone to sickness of the soul. And yet the Church calls original sin Felix Culpa, “happy fault”, because it allows God to pour out his love and mercy in abundance. And Our Lord longs to pour out his mercy. I even dare to think that God loves us not in spite of our imperfections but because of them.
Having a child with T21 has shown me that we don’t need to be robust spiritual giants to become holy. We needn’t expect to see great strides in our paths to perfection. For some, that is the path God has chosen. But for ordinary people, the path of holiness is one of spiritual childhood, of being a little child carried in the arms of Our Lord.
When I look at Christopher, I don’t see DS. I see a happy, out-going child who makes people smile, a loving, affectionate kid who works really hard at learning to speak, a naughty brown-haired boy with chubby cheeks and joy sparkling in his eyes. I don’t see disability. I see joy.
And I believe that’s the same with Our Lord. Yes, we are sinful, imperfect creatures. But that’s not what He sees. He sees souls bathed in His grace, sanctified by the sacraments, redeemed by His passion. Even in the case of a woman who has aborted her child, God sees one whom He loves, a child, His child, who is wounded and hurting. And He longs to heal her with His forgiveness. In all of us Our Lord sees love and joy. And that realization, that greater understanding of His love and mercy, is perhaps the greatest gift Christoper has brought us. We truly feel grateful and privileged.