How Being Jacob’s Mother Changed My Faith

I know I seem a little old to be giving a senior sermon, even a college senior sermon, but I am grateful to speak this morning on behalf of Jacob, who is finishing out his public school education this week at CJ Greene Education Center. I was pregnant with Jacob when Scott and I joined College Park, 22 years ago, and it is not an understatement to say that without my church family, and the remarkable staff here, that I would not have arrived at Jacob’s third decade of life as a person of faith. But that faith, thankfully, is not the same faith I started on the journey of motherhood with, and as we close one chapter of Jacob’s life and begin another, I have been mulling over where I’ve been and where I am now, and I am grateful to Lin for letting me tell Jacob’s story, and my story, this morning.

When Scott and I found out that I was pregnant, joy abounded. All through my pregnancy, I felt like the child inside of me was joyous, and I think that’s because I was so very happy. Yes, I had nausea, and yes, I was uncomfortable (he was a July baby, and all you summer mamas out there know what that means), but I was going to have a baby and I was lit up with joy. Our labor was long—27 hours—and after 2 hours of pushing, the doctor and I were both ready for a C-section. In the haze of anesthesia, I didn’t recognize the subdued panic at the delivery—I asked what his APGAR score was (because as Ryan will tell you, I am the kind of momma who wants to know all the scores, all the time) and no one would tell me, until I was finally told that “his second score was a solid 8”. I learned later that his first one was a 3, meaning that Jacob had gone without oxygen during part of his entry into the world, and his breathing and circulation showed the effects of that oxygen deprivation. But eventually he cried lustily and we had our baby boy. During his neonatal exam with our pediatrician, however, Jacob started to have seizures and had to be resuscitated. He was quickly transferred to the NICU, where he spent the next 10 days. He continued to seize on and off for the next 3 days, and in the meantime, I was transferred to the adult ICU with postpartum pre-eclampsia. After I went home, Jacob had to stay behind, and driving away from the Women’s Hospital might have been the most agonizing drive of my life. I couldn’t drive yet, and Scott had to get back to work (the US needs paternity leave, people) so College Parkers drove me to the hospital every day, picked me back up, and made sure we were eating. I was in a fog and remember being exhausted, out of my mind with worry, afraid, and just utterly drained.

We were deliriously happy to bring him home, even on anti-seizure medications. We were able to wean him successfully from those when he was 6 months old, and he has never had another seizure. But his developmental growth worried his doctors, and so began an emotionally draining, painful round of visits to all sorts of specialists, first here, then at Wake Forest and at UNC. Jacob was happy and joyful, but he was not doing the things babies should do—reaching, scooching, cooing—and so finally, we went for a CT scan at Wake Forest that showed us what no parent wants to see—massive brain damage to their baby’s brain. Jacob’s childhood would not be the one we had envisioned. In many physical and intellectual ways, Jacob would remain a child forever. There was a deep grief inside me—I was grieving the childhood we had dreamed of for our son, and beginning to grieve what would never be. There
was also anger, denial, and fear at what would mean for him and for us.

On the Wednesday night we received these results, I came to the weekly church dinner and shared what we had learned during prayer time, barely able to look up through my tears. And I looked sideways and saw that Tim Lowrance was also crying, tears rolling down his cheeks. And in that moment, I felt not so very alone. Because my own biological family was grieving too, as was Scott’s, I felt instinctively hesitant to share my own ache with them, knowing that it would only make their burden heavier. But I found here an unexpected source of comfort in that shared grief, and I believe that it was in that moment that I knew that I would not be alone, and I felt a smidge of relief.

From the fundamentalist faith of my youth, including from my own mother, I heard words that were supposed to bring me comfort—the most biting of which was “God gave you this child because you are strong enough for it”, or ironically, the exact inverse, “God gave you this child to make you stronger.” For the mother who is aching because her baby isn’t doing what all the other babies are doing effortlessly, who worries about what that means for his future, a deep, fiery anger grows inside—because what they were telling me was that God had done this to Jacob, that God had caused this sorrow, harmed my child, in order to put me through some fiery furnace to make me better. Looking back, I know that this was the moment that I put my childhood faith behind me, and began to wonder if there was a God at all, or if that God was worth worshiping. In this moment of darkness, Michael made a comment to me that saved my faith: he told me that he believed that God was also grieving what had happened to Jacob, that God shared my grief with me. And in that moment, I was given a glimpse of a God who would go with me, who loved Jacob as I did, and moreover, a slow hope began to dawn inside me, and I began to believe that God was compassionate, that he loved me. I know it seems impossible that such a simple truth had eluded me; I was, after all, part of a family who was at the church door every time it opened, and I was on every youth trip, every youth choir, every everything, but the God of my youth was a judgmental God, an exacting God, and I was afraid of him and didn’t even realize it until I began unpacking my faith, deciding what was true and what was ugly, unscriptural, not true.

But a recognition of a God who loved me would have been meaningless without a family of faith who were the literal hands and feet of Jesus to us. College Parkers doted over our child, smiling when he babbled loudly and inappropriately during prayers, cooing over him, loving him as deeply as College Parkers do all of our babies—and that was balm to my mamma’s soul. My boy was loved here. College Parkers gave me the grace and allowed me to be Jacob’s mamma but not only his momma—I could leave him with others and ask questions in Sunday school, serve on the diaconate, think and learn in Bible study. I didn’t always have to be his momma, and for moms of all kids, that is a gift. But for the mom of a special needs child, it is a gift beyond measure, because no one can carry the worry all the time. Saundra Westervelt insisted that Jacob not be left behind in the nursery when it was time for our kids to move up to “big kid classes”, because she wanted all our kids to understand what it meant to be fully human and loved, and so Marnie Fisher-Ingram found us the remarkable Sara Warren, who is part of our

Jacob family still today, and she was with him every moment of childhood at College Park, helping him to take what he could from children’s activities. And what he took from those experiences is that he is deeply loved, and that there is joy here. Terri Ramsey helped us find speech therapists who would give up on trying to make Jacob make sounds, and help him learn to communicate, even if that meant using a device, and indeed, that is how Jacob communicates today. I call Terri our family’s angel…she did not shy away from the reality and pain of parenting a special needs child, but she reminded me of the joy in Jacob, because she always saw it, and she brings out joy in him. It was Terri who eased my guilt when I realized we would have to accept federal aid for Jacob to help pay for his medical bills and ongoing care. Scott and I were also blessed that when our marriage collapsed under the weight of this grief, that we were both still loved deeply here, and we both found partners who would be true co-parents with us. Lynn and Tammy are both mothers to Jacob, and I honestly cannot fathom how we would have made Jacob’s life as full as it is without them. In ways large and small, practical and philosophical and spiritual, College Parkers have helped us raise our child, and have shown me what it means to be a family of faith.

I saw that a real community of faith loves all of its members, and I continued unpacking my faith. During one of her studies here, Diane Lipsett examined the healing stories in the Bible, and it dawned on me that I believed that faith must heal—and that subconsciously, since Jacob was not going to be healed, I believed that I was not worthy, that my faith wasn’t strong enough. She led us to the feast story in Luke, and gently pointed out that at this feast, no one was healed. Everybody who arrived lame or blind was still lame or blind when they left the feast, but they were part of the community, and their most grievous affliction—that of being left outside—had been healed.

Jacob is never going to call me Mom; he will never speak. He will never eat a meal unassisted, he will not be able to dress himself independently, or know how to let us know if he is being mistreated. He will forever be a 2 year old, even if he learns new routines or skills. My longest nights are the ones when I cannot get this out of my head. And there is an ache that will never go away as I continue to grieve the young man and adult that he will never be. But I have found a God who loves us, and we have found a community who loves us, and I am learning to trust that we will all walk this road together, and for that, I am profoundly, eternally grateful. And my Jacob exhibits a childlike joy; he is the epitome of today’s scripture. This joy makes my own heart burst with happiness, and that is no small thing for a momma. Thank you all, for loving us, and for loving our Jacob. You are the family of God on earth.