My son Max is a beautiful boy. He is tall and lean, with soft blonde hair and eyes the color and shape of almonds. Max is 8. He loves Spiderman, his brother and sister, and wrestling with Dad. Max is sensitive, empathic and kind.
My daughter Pia is 7. Pia is the funniest person I know. I don’t say that because I am her dad; I say it because Pia has great timing and a penchant for mimicry. She is hilarious.
Pia is also athletic, curious and a performer. If they let her, she seats guests on the couch and performs for them the entire score of “The Greatest Showman” or “Hamilton.”
Pia and Max are both adopted, and they both have Down syndrome, trisomy 21.
Of course, I thought about my children as I read the December cover story of The Atlantic on Down syndrome diagnoses and abortion. But I also thought about their birth moms.
Their stories are not mine to tell. But I can say that my children’s birth mothers faced some of the difficult economic and social forces that compel women to choose adoption. And at the same time, they faced the challenges that come from a prenatal diagnosis of Down syndrome. They faced, no doubt, pressure to have abortions.
The best estimates suggest that more than 70 percent of U.S. women with prenatal diagnoses of Down syndrome have abortions.
The best estimates suggest that more than 70 percent of U.S. women with prenatal diagnoses of Down syndrome have abortions. Women report facing medical and family pressure to do so. But our children’s birth mothers took hard news, and they chose to bring vulnerable, inconvenient, unpredictable and challenging babies into the world. That was not easy.
When parenting their children did not seem like the right choice, they chose to make adoption plans for them. I cannot imagine a more difficult moment for a mother or a more poignant expression of selfless love. They are our heroes. They gave life to our children and made choices for them that came at great personal cost.
We met our son Max in the neonatal intensive care unit of a rural Colorado hospital. He was 10 days old. Max was connected by tubes and wires to all manner of machines and monitors. Later I would learn their names and what they did.
But when we met Max, I mostly watched his gaze, as new fathers do. And I saw in his face and hands and neck the distinguishing marks of Down syndrome. Those things were not yet familiar to me.
We did not set out to adopt a child with Down syndrome. But soon after Max arrived, Pia came into our lives. We found ourselves, rather suddenly, the parents of two disabled children. We were manifestly unprepared.
When we met Max, we did not have any cribs or car seats or diapers. In Babies R Us, we drained our checking account in 15 minutes. And until we met Max, everything I knew about Down syndrome I had learned from watching reruns of “Life Goes On.”
[Don’t miss more stories like this one. Sign up for our newsletter.]
Few of us have had meaningful personal relationships with someone who has Down syndrome. I think that is part of why they are aborted in such alarming numbers: Their lives are unfamiliar to us and sometimes defined by limitations and impairments. We are afraid of what we do not know. And we are afraid of suffering: ours and theirs.
My wife and I are not pious or sentimental about our children’s lives. And we do not think facile stereotypes represent them well. They do suffer. Pia has had cancer twice and has come very close to death. Max has sensory issues that make textures and tastes and sounds sometimes a near insurmountable burden. Speech is a struggle for them. Reading and math take focused efforts. They want to be with and befriend their peers, and gradually, I fear, they are becoming aware of their limitations and aware that they are different.
I have realized they are not unique because they suffer. They are unique because they do not hide suffering well.
No father wants his children to be rejected, and while I have seen my children loved and celebrated, I have also seen that they are different, and I fear what that portends.
But I have realized they are not unique because they suffer. They are unique because they do not hide suffering well. It does not occur to them that suffering might be secret or a source of shame. I mask anxiety with a veneer of confident affability. I know how to make it seem I am doing better than I am. I have picked up the idea that I should project strength, independence and poise.
My children have no such pretenses. They are exposed and vulnerable, and they challenge me to live that way. It rarely makes me comfortable. But I have found it often leads to real intimacy and authentic friendship.
My children do not exist to teach me lessons, but they have. They have taught me that it is a gift to spend time in the company of someone, with no thought given to the passage of time or the tasks to be completed. They have taught me that independence is a myth and interdependence a strength. They have taught me that love comes from seeing a person as they are and not from technocratic assessments of what they can do.
Perhaps that is the most important lesson of loving someone with disabilities—none of us is really strong enough, smart enough or good enough to go through life on our own.
They have taught me that our lives are made meaningful in love.
Those lessons are hard won. I’ve sometimes resented the limitations that disabilities place on our family. Our children need stable predictability, they do not travel well, and they depend upon routine. They need help in the bathroom and with dressing and with eating. A plate of eggs sometimes takes an hour. Those things are not their fault. But it would be a lie to pretend I have always accepted them with joy and generosity.
They require love. Love I do not possess naturally, virtue that exceeds my good will. To love them as a father, I turn to our Father in heaven, for grace, patience and good cheer. My children require of me a conversion.
Perhaps that is the most important lesson of loving someone with disabilities—none of us is really strong enough, smart enough or good enough to go through life on our own. We are in real and enduring need of one another, and we are, each of us, completely dependent on a merciful and generous God.
More Stories from America
– Everything I Can Do: Living with Down syndrome
– Patricia Heaton: ‘Iceland isn’t eliminating Down syndrome—they are just killing everyone who has it.’
– The dignity of human beings must not be measured in ‘usefulness’
