By Dr. Rebekah Ponsford-Hall
Our newborn daughter was ill and we were shocked. We soon learned that she had contracted cytomegalovirus (CMV) in utero. Though nobody could predict what the future would hold for Keira, all signs pointed to severe disabilities and a limited lifespan. I was crushed.
It helped to be reminded me of the story of the man who was born blind: “Who sinned that this man was born blind? The man? His parents? Jesus answered, “Neither hath this man sinned, nor his parents; but that the works of God should be made manifest in him.”
Early on I had a profound revelation: It’s not even about Keira. It’s about me. This is going to change me, my life, my theology. Keira is fine; exactly who God created. The difficulty here is me; learning to accept her, love her, and deal with the assumptions and expectations of others.
I transformed. I told everyone about Keira. A small part of me believed this was a private, shameful matter. A bigger part wanted everyone to know; as if they could show me how to cope or at least lend me some strength. This was so unlike me. I’d always dealt with sadness privately. Not this time. God was showing me a whole new way. I would tell everyone. And it was a desperate plea. Help me. And love her. Please, please love her.
Keira’s beauty is indescribable. Her eyes lock on me and there is no doubt that she loves me. I wonder: is it possible that I’m not here for her, but she for me? Because she is love. Just love. That’s what she has and what she is and nothing else. She will never do what the world would have her do. She has no worth in the world’s eyes. But it doesn’t matter. Because, in the end, what really matters? Just love.
We’ve committed to making Keira’s life as big as possible. We want to include her in all we do, giving others the opportunity to know her and, hopefully, garnering support in the process. We began inclusion ministry by trying to maximize Keira’s inclusion in church. The process was harder than I imagined. Why?
Fear. Fear is powerful. As Keira grows, it’s more and more clear that she is not like the other kids. The differences are unknown, foreign, and hard to ignore. Disability forces us to come face to face with the reality of brokenness in the world and in ourselves. It’s uncomfortable. If I get too close, I won’t know what to do. I won’t be able to fix her. I’ll feel like a failure. I’ll feel so limited. Because I am limited. We are limited.
I am limited. And I am tired. Daily, I battle a confusing constellation of fatigue, burnout, grief, depression, guilt, stress, isolation, and loneliness. I chronically anticipate the next ICU stay or worse. I try to live in the moment, maintain a sliver of a practice, parent my sons, and advocate for CMV prevention. Always trying to extract meaning, as if that’s mine to do, from this difficult life.
So inclusion not only means Keira. It’s Jeff and the boys and me. It’s the pastor taking my boys out for a treat. It’s a gift card to the hospital cafeteria. It’s hospital visits on Christmas Eve. Knowing that we, too, are afraid, our church family overlooks their own discomfort to embrace us in love. These moments of inclusion are life giving. They are what being the church is all about. They are literally my strength when I have none.
Never heard of CMV? You are not alone. Only 9% of women have ever heard of CMV. Here is what you should know:
CMV is common
– CMV is the #1 viral cause of birth defects
CMV is present in 1 in 200 births
CMV is serious
CMV can cross through placenta to an unborn child
CMV can cause deafness, blindness, cerebral palsy, intellectual impairment, and death
CMV is preventable
Pregnant mothers can greatly reduce their chances of acquiring CMV by following basic hygienic precautions
Learn more at: Nationalcmv.org
Rebekah Ponsford-Hall is a psychologist, CMV-advocate, and former inclusion minister. She lives with her husband and three children in southern Idaho.