By guest author Deborah Stilt — Pro-life advocates care about the personhood of children, born and pre-born. We care about the personhood of the moms and the dads. We are horrified at the barbarism of abortion. The brutality; it sickens us. We say we want to end it. We pray, we march, we protest, and we vote. We tell the world that all lives matter. But do they really, even in the most difficult, heartbreaking circumstances?
In the real world, pro-life advocates encounter situations that challenge our professed beliefs. The rape victim. The incest survivor. A mother whose pre-born child is diagnosed with a disease or disability. Somehow, the child growing safely in the womb seems a little less precious now—his mother’s circumstances and society’s “cost” overshadowing his very existence.
Emily is thoughtful, honest, courageous, and ultra-protective of her family and their privacy, but her story is one the pro-life movement needs to hear. We talk of equal value and equal protection when it comes to the most vulnerable.
But Emily and her family live it out every day.
Emily and her husband Tyler have been married 10 years, with an 8-year-old daughter, two sons ages 6 and 4, and a 1-year-old baby girl. By all appearances, they are a “normal” American family. But when you take the time to get to know them, you realize they are altogether extraordinary.
Three years ago, Emily’s youngest son spent time in the hospital, due to an acute blood platelet disorder and elevated liver enzymes. Upon further analysis, doctors discovered he has Duchenne Muscular Dystrophy (DMD). DMD is a genetic disorder characterized by progressive muscle degeneration and weakness, due to the alterations of a protein called dystrophin that helps keep muscle cells intact. The disease primarily affects boys, so Emily’s oldest son was also tested. Doctors discovered that he, too, suffers from DMD.
DMD is an irreversible, progressive disease, for which there is currently no cure. Symptom onset begins in early childhood, usually between ages two and three. Young children with DMD may seem clumsy and fall often. Parents also may note that children have trouble climbing stairs, getting up from the floor, or running. Many children begin to use a wheelchair by the age of 12, and during the teen years, activities involving the arms, legs, or trunk may require assistance or mechanical support. The prognosis is grim. Patients with DMD often die in their late teens or early twenties from respiratory insufficiency or cardiomyopathy, with only a few DMD patients surviving beyond the third decade.
Finding a new normal
“When we left church, my husband was crying so hard he couldn’t even drive.”
The early days post-diagnosis were scary. Emily and Tyler entered a world full of unknowns and so many unanswered questions. They immediately sought out the support of their family, particularly Emily’s parents, who had suffered the loss of a child and were able to offer them comfort through this new trial. While Tyler felt “immediately, so heartbroken,” it took Emily longer to process everything. And then it came as waves of guilt.
“This is my fault. I gave him this, from the moment he was conceived in my womb. And I thought he was safe…”
As a carrier of the X-linked genetic disorder, Emily struggled with these feelings for some time. She also wrestles with feelings of chronic grief, which hits over and over again. There are long stretches of joy with her kids, but then, with every stage of the disease, the grieving process begins anew and her original dreams for her children are dashed by the reality of the ongoing issues they face.
Gradually, Emily and her family have adjusted to a new “normal,” their days busy with homeschooling and doctor appointments. In addition to her sons’ DMD, Emily’s oldest daughter has high functioning autism, and her oldest son has autism and attention deficit disorder. This complicates what are already very challenging circumstances, to say the least.
“A lot of times I’m not really thinking about the future, I’m just trying to manage the day to day.”
Working through all these challenges has strengthened the bond between Emily and Tyler, and they have developed into a true parenting team. Often, Tyler will spend extra time with the children in the mornings before work, giving Emily time to read her Bible and take care of the baby, making sure the day gets off to a good start. After Tyler leaves for work, Emily starts their homeschooling day. When Tyler comes home, he takes care of the kids again, settling them in for bed.
Trusting God with baby number 4
“I just couldn’t shake the feeling that our family wasn’t complete.”
Many people think that it is irresponsible or even unethical to continue having children after a DMD diagnosis. In fact, the consensus is either to not have kids at all, or to undergo in vitro fertilization, or IVF, in order to “weed out” the embryos that carry the DMD gene. However, Emily and Tyler kept feeling that they should have another baby and spent time seeking the Lord as to whether this was His will for them or simply their own desires. They got their answer when Emily became pregnant.
After 9 months of waiting and praying, Emily gave birth to a healthy baby girl. While her youngest daughter was unexpected, Emily says she was “a very much wanted surprise.” Emily described her daughter’s birth as a “Eucatastrophe” – or good catastrophe, a word coined by author J.R.R. Tolkien to describe the point in the story where the tide turns.
Eucatastrophe – “Joy in the midst of sorrow that you never expected coming.”
Throughout her pregnancy, Emily and Tyler prayed that this child would not have DMD, but were willing to welcome another child with DMD into their home if this was God’s will. Pre-natal testing is available and recommended to known DMD carriers to determine if the baby has the disorder, but Emily refused to be tested. The test itself is a risk to the baby, and she knew she would never have an abortion. Most children diagnosed prenatally are killed in the womb. In one study, out of 147 affected or at-risk pre-born children, 145 were killed and only two affected boys were born.
Currently, there is no treatment for DMD immediately at birth. So, when people say, “you know you can go get testing,” the unspoken message is “so you don’t have to have another disabled baby.”
“What does that say to your other children? – I would have gotten rid of you if I could have.”
A life worth living
There is a common view, even in some parts of the pro-life movement, that a life with disability is not a life worth living. Time and again, we read heartbreaking stories put out by pro-abortion media that offer abortion as the humane, compassionate solution to disability diagnoses, so women don’t have to be “forced” to give birth to a child with a disease or disorder. This Utilitarian worldview says, “You are a lesser person if you are disabled.” It positions the disabled as a drain on resources, their families, and society, and therefore, they are better off dead.
“It really hurts me when people say that. If they are a person, then they are always a person. It doesn’t matter if they’re disabled or not.”
As Christians, when we buy into the idea that some lives are less valuable than others, we lose sight of our foundational understanding that human beings are made in the image of God. All people, at all stages, and in all conditions are fellow image bearers. And what if we should we find ourselves parenting one of these little ones? We should count ourselves blessed, even if their life will have limits, even if they will die shortly after birth.
Instead of enjoying this blessing, too many families are encouraged to end the lives of their children before they are born. Presented as the “compassionate choice,” abortion promises to alleviate potential pain and suffering. When parents are contemplating this decision, Emily asks some tough questions:
“Do you believe your baby has value? You wouldn’t be aborting them if they didn’t have this disease, so does that mean their disease makes them less valuable to you?”
Families who discover their children may be disabled need our empathy and our support. They don’t need abortion. Abortion robs the family of the time they might have had with their child. Time filled perhaps with suffering, yes. But also filled with joy. Even five minutes holding and loving that child could be an intimate, healing moment.
Suffering and heartache are part of the human condition. They create opportunities for people to serve and to develop a deeper understanding of what it means to fully love another human being. To say a suffering or disabled person’s life is not worth living is to dehumanize them, invalidating their experiences and the impact they have on those around them. Jesus Himself was not exempt from suffering. Why should we be any different?
“We have never once doubted that the Lord is good in all of this.”
Emily’s positivity is encouraging. She recognizes the hand of God in her family and sees the value inherent in each of her children. While many people would feel discouraged, she realizes that disability is not something to fear. It does not change anyone’s value. Emily understands personhood to a degree most of us will never attain. It is the very embodiment of her family. She lives and breathes it every day. And while we don’t all share her experiences, we can learn from them. Each of us has limitations, but they don’t make us any less human or of any less worth.
“A life that includes suffering is still a life worth living.”
Deborah Stilt is the social media coordinator for the Personhood Alliance and has been active in pro-life media for several years. But most importantly, she’s a California mom who is fighting against the lies of the culture and for the protection of every human being without exception.