Prior to this experience, when pondering the meaning of fatherhood, I would have thought of showing my children affection, forming their character, teaching them their parts of speech, instructing them in the faith, or playing games of all sorts. I have been able to do these things and more with my son. My daughter will not likely have the opportunity to see me smile at her, hear my words of affection, or feel me holding her. Anencephaly doesn’t generally allow for such sensations.So often, when we think about having children, we filter our fantasies through a lens of perfection, or just normality. "When Janie gets married... When Joey graduates... When Harold starts walking..." But, since children are a gift, there's no guarantee of "normality". We are blessed with four perfectly healthy, "normal" children right now. Who's to say what might happen in the future, or with future children? Parenthood is a life not of wish fulfillment, but of service. For some, like Kyle, that service is brief and painful (though given with love). Other parents may have to devote even their declining years to caring for an adult child who is disabled or cannot live on her own. Once a parent, your life is no longer your own.
I have come to the conclusion that what it means to be a father to Vivian is this: I am there with her, suffering with her, even if she cannot know me. Is this experience of fatherhood in any way akin to the fatherhood of God, who loves and weeps for his children?
Of course, that shouldn't come as a surprise to us who call ourselves Christian. "If we live, we live to the Lord, and if we die, we die to the Lord; so then, whether we live or whether we die, we are the Lord's." (Romans 14:8) We belong to the Lord; so do our children, and like the servants entrusted with their master's talents (Matt. 25:14-30), parents will have to render account to God of how we cared for our children. Sometimes nurturing those children involves the joy and worry of seeing them learn to care for themselves and become independant; sometimes it involves keeping them close and providing assistance well into adulthood, or even all their lives. Some parents, like St. Monica, suffer through watching their "normal" children make bad or even evil choices. Some have to continue their service even to their grandchildren. Some have to watch their children die painfully.
Parenting is a crapshoot. You don't know what you're getting into at the start, and you don't know what game-changing events will suddenly alter the entire course of your life. There is a model to follow, however: the Heavenly Father whose perfect Son still had to suffer and die.