I’d like to take this opportunity to wish my mother a Happy Mother’s Day. That’s her in the center, surrounded by my two girls, Leah and Mira. She’s put up with me when I haven’t exactly been the most attentive son. I certainly wasn’t the easiest kid to raise, and I appreciate the many sacrifices she and my father made for me, along with their efforts to provide my sister and myself with a strong spiritual foundation.
My mom has three grandchildren…our two girls, and my sister’s daughter, Shannon (pictured below with my sister). Shannon’s a neat kid. She’s sixteen, is a huge fan of Keith Urban, and despite his narcissistic, self indulgent act of betrayal, remains a big fan of the player who used to wear Number 23 for the Cleveland Cavaliers.
Shannon was born 15 1/2 weeks earlier than had been expected and spent eight of her first thirteen months of life in the neonatal intensive care unit at Rainbow Babies and Children’s Hospital in Cleveland. When she was home in her early years, there was usually a nurse present at night to help monitor the equipment that helped her to breathe while her parents got some sleep. If you were to meet Shannon today, you’d notice she has a mild degree of cerebral palsy, some developmental delay and difficulty expressing herself verbally.
Shannon’s presence in our family today is a product of prayer answered through the resources of modern medicine. Nevertheless, Shannon’s birth profoundly affected two households and the relationships that would develop between my girls and my side of the family.
Understandably, my mother became very connected to Shannon and my sister as a result of what they experienced. Further complicating matters, my father died suddenly when Shannon was three months old and fighting for her life in intensive care. My sister needed lots of help and support and it was probably good that my mother was able to step into the situation and occupy her mind by helping my sister during a time of grief. Several years later, as often happens in families of kids with serious disabilities, my sister and her husband divorced, and my mother’s availability and support became even more important. For whatever reason, my sister has never been particularly receptive or interested in whatever help I had to offer…be it connecting Shannon with medical professionals, resources to ensure that Shannon was receiving the best possible educational supports, or even tickets to basketball games.
One area in which I had offered to help was in arranging for supports for Shannon’s involvement at church and Christian education. While my wife and I would consider ourselves to be evangelical Christians, my sister and my mother are Roman Catholic. When Shannon was a preschooler, I was the “Gentile” member of our region’s Catholic Charities Services Board, and the folks in the Cleveland Catholic Diocese were eager and willing to do pretty much anything to support my sister in Shannon’s religious education, had she been willing to ask. Today, Shannon regularly attends church, but to my knowledge, she’s never received any of the sacraments of the Catholic faith, despite my sister serving as a eucharistic minister in her church. Our team at Key Ministry has actually done an introductory training at her church, but for whatever reason, Shannon has never been actively involved in any of the programming offered for children and youth there.
One of the other byproducts of Shannon’s situation is that my daughters have become aware, as they have grown older, that their grandmother has a very different level of involvement with Shannon than she does with them. My girls aren’t deprived of attention from grandparents…my in-laws are very vital and active, live about an hour from us, and are around regularly for activities at school. They both love their grandmother and they’re excited when they get to see her, but they realize that their relationship is different with my mom as opposed to my wife’s parents.
So, where am I going with this? First, our family’s experience of a child with a disability has made me aware that the impact of the disability isn’t limited to the nuclear family but affects the extended family as well. Second, while we as the church can offer to do what we can to support families affected by disability, as a psychiatrist and as a brother, I can’t fully comprehend how the 24 hour a day, seven day a week experience of being responsible for a child with a significant disability colors one’s understanding and attitude toward God and experience of trying to be a part of a community of faith through the local church. We can do everything we possibly can to reach out to families of kids with disabilities who aren’t actively involved with church, but we also need to be slow to judge parents who fail to take us up on the offer until we’ve walked in their shoes.
Happy Mother’s Day to all the moms who serve so faithfully, both at home and in their local churches.