On September 14th, BFJN held an uncomfortable conversation on the topic of living with disabilities. My parents, David and Tracy Barclay, were our special guests. They spoke about their experience parenting a son with disabilities in an effort to share how to care for and love individuals with disabilities well.
One of the biggest challenges they have faced was the significant pushback from the medical community during my mother’s pregnancy. When they were pregnant with Éamon, and it was discovered that he would be born with severe disabilities, my parents faced tremendous pressure to pursue abortion. Although they knew it would be a difficult road ahead, and that it was possible for Éamon to not survive outside the womb, my parents knew that with God’s strength, they would be able to persevere and ultimately decided to go against the opinions of the doctors.
Éamon’s first years were especially challenging. He faced many medical complications which eventually led to him being trached. This medical operation was life-giving for Éamon, but it meant that my parents could no longer be his sole medical providers. As a result, Éamon received sixteen hours a day of at-home nursing care. While this was a huge adjustment for my family, it has been one of the greatest gifts.
Further questions that were asked involved Éamon’s access to educational development. Are there options for people with severe disabilities? With his various physical and cognitive disabilities, my parents assumed that there would be no option for in person schooling and that my mom would homeschool Éamon. However, they were amazed to find out that schools do exist! Éamon has attended the CTC Academy for many years now. This school provides specialized care and therapy and Éamon has the opportunity to attend school like others his age.
While my parents acknowledged how grateful they are that Éamon is able to attend school and have at home nursing, they recognize that this is not the case for everyone with disabilities. My family resides just outside of New York City, and therefore resources for those with disabilities are more readily available. For many who live in more rural cities, opportunities for these programs and medical care are much harder to come by. There is still work to be done in this area.
At the conclusion of the conversation, my parents were asked, what is the greatest life lesson Éamon has taught you? The answer to this was easy. Joy! Nehemiah 8:10 states that “the joy of the Lord is your strength.” This verse encompasses Éamon and his testimony to others. Despite his many physical and cognitive disabilities, Éamon radiates the pure joy of Christ and lights up every room he enters.
My parents ended with two challenges. The first is to see the world through childlike eyes. Ask questions, understand those who you live in community with, this way we can all better care for each other. By doing so, we can all fulfill their second challenge which is to be prayerful people. By having the uncomfortable conversation and getting to know those around us, we can more specifically pray for their needs. And remember, when you say “amen” at the conclusion of your prayer, don’t forget to say one more prayer for Éamon!