I was asked to speak to our church this morning for Sanctity of Life Sunday. Below is the link to the service and transcript. I begin speaking at about the 42:05 mark:
Sanctity of Life Sunday
4 years ago I took my 3 oldest girls on a trip of a life time. It was a last trip together before our oldest left for college. We travelled from our home in Okinawa to Osaka Japan where we explored local dining, Kyoto history, and, of course, Harry Potter World at Universal Studios. By the time we landed, one girl was sick. During that week, 3 of the 4 of us had come down with the flu. We did Universal Studios, castles, temples, and the 1000 Tori Gates with 103 fevers, muscle aches, and exhaustion, but we had an amazing time.
2 weeks after returning, I was still feeling under the weather, but assumed I was just having a hard time shaking the virus – until I walked into a Japanese market and the smell from the fish market in the back seemed to be so strong and overwhelming I couldn’t do my shopping. The next morning 2 pink lines showed up on that stick and by that evening I had doctor confirmation – I was pregnant.
I was devastated. After 17 years with little ones and 13 years homeschooling, I was graduating our first and everyone was reading and writing independently. I LOVED having a house of teens and pre-teens. I was looking at finally going back to school for my Master’s Degree, had picked up photography, and was even able to sit and read a book at the beach. Now, I was starting over.
9 weeks later my OB called. She began gently, “Your hormone levels look great. Iron, Vit D, glucose, are all good. But, the fetal genetics testing is not what we hoped.” Living overseas with limited medical care and knowing between my age and my history this was a high-risk pregnancy, we had chosen to do a prenatal genetic screening which analyses fetal DNA in maternal blood. It isn’t considered diagnostic but has a 99% accuracy rate for positive results. My results gave us a 97% likelihood of a baby with Trisomy 21 – Down Syndrome.
Over the phone, my OB began explaining that a Down Syndrome diagnosis is not what it was even 40 years ago. Life expectancy is now about 60, instead of 30. With modern medicine and therapies individuals with Down Syndrome are doing more, living longer lives, and becoming more independent than ever. Then she launched into all the risks factors – 50% likely hood of a heart defect ranging from mild to fatal, raised risk of gastrointestional defects which could need surgery or invasive intervention immediately after birth, intellectual disability ranging from mild to severe, global developmental delays, low muscle tone, leukemia, and a higher risk for many other medical issues. He would require therapies and interventions from birth and probably through adulthood. He would probably never be independent. She offered an amniocentesis for an official diagnosis. Finally, she said, “You can terminate the pregnancy. Because of how far along you are it will need to be done quickly. I need to know within the next 3 days so we can start the paperwork and get you to Hawaii for an abortion.” I told her termination was not an option and we would go ahead and start the process of going to Hawaii for further noninvasive testing. I would not risk a miscarriage. After we hung up I realized she hadn’t told me the information I wanted most – were we having a boy or a girl.
The next week, a well-meaning nurse walked into my exam room with a large stack of papers. She apologized for the diagnosis and told me these were the forms I needed for the termination. When I told her I was not terminating, she rolled her eyes, and asked if someone had explained to me what Down Syndrome is, what to expect, and what it would mean for me and my children – because my husband job has him gone a lot and I have all those other kids. As she left to get what she needed for a prenatal exam, she told me I needed didn’t have much time left to agree to terminate, so she would just leave the forms with me. It wasn’t until 17 weeks later, at 30 weeks pregnant, at my new OB’s office in Ohio a medical professional asked what we had named our son. That was the first time Micah was treated as a person, not a problem or a diagnosis. I sat there and cried from relief.
I am blessed with a husband, family, and friends who are very supportive. When told our little boy had a little extra special, they rallied around us with encouragement and excitement. They walked next to us as the kids and I had to leave Bob behind in Japan to return to the US, some scary ultrasound findings the last 4 weeks of pregnancy, an emergency c-section at 35 weeks, the NICU, then navigating the hundreds of appointments and mounds of paperwork. I would be lying if I said that through that time it never crossed my mind that maybe I should have spared us all this, and agreed to an abortion.
The sad reality of our current system and culture is that my experience was more positive and provided more support than what many women have. The stories told of pressure to abort from doctors, family, and friends is heartbreaking. Often what is communicated is that abortion isn’t just an option, but it is a responsibility. “Termination” is the responsible thing to do to spare yourself, your family, your community, and that future child the problem of Down Syndrome. In the United States, it is estimated that 67% of babies with a prenatal Down Syndrome diagnosis or risk are aborted. That is probably a conservative estimate. In some nations, it is 99%.
So what does it mean being Pro-life mean in the face of those statistics? Yes, it can mean advocating for legislation, donating to crisis pregnancy centers, adoption, and foster care. But that is only the beginning. I saw a quote this week, attributed to Fredrica Matthews-Green that said, “Abortion is not a sign that women are free, but a sign that they are desperate.” Abortion rates this high are not just a signal that our nation does not recognize the innate value of a human life, but that we are failing to support mothers and families. The Church is no exception. Steve Demme, founder of Faith Building Families, the author of our math curriculum, and the father of an adult son with Down Syndrome warned me that probably the hardest part of raising a child with Down Syndrome is finding a church community which will support us and truly love him. While this has not yet been our experience, it is one I hear repeated within the Special Needs Community. The American church is not known for being a loving, safe, accepting place for families and individuals with Special Needs. So what can we be doing?
When I was asked to speak this morning, I asked other Special Needs Moms “What does a pro-life Church and Community look like to you?” Overwhelmingly, I got several types of responses.
First – Welcome us. Talk to us. Listen to us. Encourage us. Seek us out. Talk to our children as you would anyone else. Be ready to accept us into your services, classes, programming, and social events from the moment we walk into the door. Approach us with not “What can they do?”, but “How can we help?”. And please, don’t tell us we did something wrong, or we just need enough faith, or we need to pray harder for healing. Have one-on-one help available so other family members can go to Bible Study. Have classrooms with larger crayons and looped scissors so our developmentally delayed children can participate in crafts. Put a couple infant toys into the preschool room, or large print Bibles into the Youth Room. Listen to our standards for our children, because giving them more help than they need or allowing them to get away with things often does more harm than good. We walk into a church knowing we can be disruptive, our children won’t fit in, and we take extra work to love, and we need to know that is okay. We want to be involved and to give back as much as we can, but we need extra support to be able to do that.
Second – Our church buildings and Christian schools are rarely truly Special Needs accessible. ADA standards are not enough. We need quiet spaces to take overwhelmed children and teens, where we can turn down the volume of music and sermons, turn down the lights, and provide the stimulation our loved ones need to regulate. We need family bathrooms where Mom can change her 14-year-old son’s diaper. Halls and doors where wheelchairs and walkers can easily maneuver. Working elevators and accessibility to every room, platform, and stage. Be aware of security and safety concerns for our elopers and runners. We know that older buildings and tight budgets make those things difficult but consider prioritizing accessibility as you evaluate your facilities and budgets.
Third – Be willing to care for the entire family. Having a family member with special needs is very difficult on a marriage, and too often ends in divorce. Provide opportunities for date nights, counseling, and retreats, remembering it is not just young children, but also teen and adults who also need 24 hour supervision and care. Respite care systems are stretched beyond their max, and families are on waiting years that can be 5 to 10 years long. Siblings have the same needs and dreams as any other siblings, but parental resources in time, energy, and finances are often very constrained. Reach out and offer transportation, help with homework, show up to games and performances, or simply be a listening ear. As parents, for as much as we know they are gaining by having a sibling with special needs, we struggle knowing how much we can’t give to our typical children. Be willing to be our friend but knowing this may not be an equal relationship – and we hate that. When our family member requires 110% of our energy to keep them safe and alive, there often isn’t much left over.
The last thing I heard a lot has to do with education. Especially given the changes in our society and culture, coupled with the challenges being faced by our public school systems, parents are looking for other options. Many feel trapped in schools which do not support their family values or are not meeting student needs, because it is the only thing they can afford, the only avenue for therapies, or the only place that will take their child. Private schools and homeschool groups very rarely are able, or willing, to work with special needs. With modern medicine and therapies there are more children being born and thriving with special needs than ever before, but our Christian schools, curriculum, and co-ops have not changed to meet those needs. Educating a child with physical, intellectual, sensory, and/or emotional special needs is demanding of time, money, and personnel, but as a Body of Christ, we have a responsibility to teach ALL our children “in the nurture and admonition of the Lord”. We need to change from saying, “We can’t”, to “How can we?”. It can be done. There are Catholic and classical Christian schools which are successfully teaching children with Down Syndrome not just reading, writing, and math, but literature, poetry, Latin, theology, logic, and rhetoric.
We named Micah after the Old Testament prophet. Micah 6:8 says, “He has told you, Oh man, what is good; and what does the Lord require of you, but to do justice, and to love kindness, and to walk humbly with your God?” It is a rhetorical question which comes in the middle of Micah revealing a picture of Christ to the people of God. Christ embodied justice, kindness, and humility, setting for us the perfect example of how we were created to live – and He reached out to the sick, lame, blind, and deaf. As the Body of Christ, we are now His hands and feet. We need to be the reason that when the next woman receives that phone call and hears “The genetic testing was not what we hoped”, she can confidently choose Life for both herself and her unborn child, no matter her situation.
Would you join me in prayer:
Heavenly Father. You are the creator and sustainer of all life and have tasked us to be your hands and feet in caring for all creation, including the “least of these”. Forgive us for turning our backs, for our failure to meet needs, and our inability to love as you love. Open our eyes to see your image in imperfections and our hearts to embrace differences. May your Body become such a vibrant and beautiful Light to our community, state, and nation, that we would infectiously lead the way in doing Justice, Showing Kindness, and Walking Humbly with you. Amen.
No comments:
Post a Comment