You come from a family of do-ers, sweet Flicker; natural pragmatists who actively work through problems and puzzles each day. This I’ll-solve-it-based orientation has been one of the most challenging things about living with your diagnosis each day. If you were sick or injured outside the womb, we would take you to the best doctors and nurse you back to health. If you were hungry, we would feed you whatever it would take to satisfy and nourish. If you were scared, we would wrap you up in safety and reassurance. But with you in the womb sick and injured, we simply cannot do a thing. No doctor can fix you. No nutrition can fortify you. No physical touch can comfort and re-assure you. Sweet Flicker, this absolutely slays us. On so many of these days I feel incapable and helpless knowing that the physical conditions that limit you were hardwired into your development so early on, and there is simply nothing that your father or I or any doctor can do to reverse what has been done. There is no do-ing outside of a miracle from God that will un-do your prognosis.
Let’s daydream for a minute, sweet Flicker, that all was perfectly well with you. In the first months of your life outside the womb I would demonstrate my love to you in so many tangible ways – snuggling, feeding, soothing, swaddling, bathing – without any expectation for reciprocation. As you age into your toddler years I would expect you to challenge and disobey me even though my commands to listen and be aware of your surroundings and be kind to others would be keeping you safe and teaching you how to love. When you approach the tween and teen years I know you would disagree with me and push boundaries and react without reason despite my efforts to guide you into making sound decisions. Through all of that, sweet Flicker, I would love you unconditionally. That’s the crazy thing about being a parent – agape love without reciprocity. My biggest hope would be for you to then take this model for love once you are mature enough to understand it and continue the cycle with the family that you raise.
When I think about all the ways that people can show love to one another, it’s generally through some combination of action, word or in our culture, gift. Your dad and I are not big gift people, typically choosing instead to communicate love through everyday word and action. Your dad is a big fan of food, so a well-cooked meal prepared with his favorite ingredients is one way that I show love. Meanwhile he knows that I am not a big fan of doing dishes, so after the meal is cooked your dad springs into action to clean up the mess, a definitive showing of his love to me. It is not the stuff of storybooks, but it’s how our love works.
Putting daydreams aside, sweet Flicker, I am constantly asking myself how I can possibly demonstrate love to you without being able to touch you or see you or talk to you or care for you in any active way. Sure I can take my vitamins, eat a healthy diet, exercise and get rest so that the conditions in your world are as good as they can possibly be. But I just never feel that is enough. What else can I do?
Lately I have been driving myself crazy with this line of thinking, sweet Flicker. But following a church sermon today I have been trying to think about how my love for you in a way parallel’s God’s love. After all, God is not in my kitchen after every meal physically doing my dishes each night, but that doesn’t mean that I question His love and care for me. It’s ever-present and unconditional. I guess that’s how I have to think about you, sweet Flicker. You will likely never be able to see me actively caring for you, but I pray that you know how much your father and I love you in the depths of your soul, ever-present and unconditionally.
A kind friend sent me a blog post by an amazing woman who unfairly is walking through a similar journey of carrying a child with a poor prognosis. In response to this post one of her supporters, who used to deliver babies, shared an incredibly beautiful description of what it looks like when all a child knows is the loving sounds and touches of family. The baby she referenced lived for only a few short minutes on this Earth, but spent that entire time in the arms of the people who loved her most. While absolutely heartbreaking, there is something incredibly comforting about knowing, sweet Flicker, that you will only know love. You will never have to confront bullies or naysayers or doubters. You will only know the protection of the womb and the love of our arms. Beautiful.
Of course I still deeply wish I could trade this reassurance with the ability to comfort and guide you in the face of adversity as you grow up, but please know sweet Flicker that I love your dad, he loves me, we love you, God loves all of us, and we can’t wait to show you what this love feels like in whatever short time we may have with you on this Earth.