Lissencephaly

In what seemed like seconds, I went from a glowing pregnant mom expecting boy #2 and boy #3, to a crying mess, not knowing what to expect. It began with Dandy-Walker syndrome and progressed to lissencephaly. We were informed of our rights, warned of looming death, and on more than one occasion, we feared we might lose our son before he could even be born. As our news unfolded and my heart unraveled, I started searching frantically for moms like me: moms who had heard this or a similar combination of news and were choosing life. I found moms who had kids doing things we thought might be impossible. I also found moms whose babies were already angels. But the message I got by observing all of the stories was the same. There was no way to predict what was coming, or what our story would be. That frantic search is one of the reasons I share our story so openly. And sure enough, those moms like me find us. They sometimes write me with concerns or questions. I am honest, but I can never offer any assurance about where they are headed. I wish I had something perfect to say to that mom, to me back then. But I cannot advise. I cannot predict. If I knew then what I know now… Well, that might make the rest of the pregnancy easier. But that wouldn’t be fair. A large part of dealing with an in-utero diagnosis is the wait, the uncertainty. Being able to see photos of my smiling blessings might be comforting, but it wouldn’t tell me the whole story. It might misrepresent some of the heartaches we’ve had. Somewhere out there, another mom like me is reading this. Perhaps not long after hearing her own baby has been dealt an unexpected diagnosis. And just like I could have in no way looked into the future, that mom cannot possibly look at our story and know where she is headed. I can’t say, “Your baby will leave that hospital and enrich your lives in ways you never thought possible!” or “Your baby will have a smile that could inspire the world!” I couldn’t have known that about our boys before they were born. And that mom can’t possibly know that about her own baby today. The cloud of uncertainty, of fear — i t cannot be escaped. So instead of looking at where our boys are today, instead of seeing how we find ways to love and be joyful, instead of talking about how this has strengthened my faith rather than shattering it, instead of giving you the “If I knew then what I know now” thoughts — I’ll just say this: I don’t know where your road will lead or how your story will unfold. I don’t know what decision you will make, and despite the judgment you might expect to find here, you will find none. No one can understand what you are feeling unless they have been there, and only those who have been told to choose truly know. But know this: If I were once again at that painfully vulnerable point, I would without a doubt make the same choice. If I was pregnant again today, right in this moment, and we heard those dreaded words about our next child. If I heard the odds, the risks, the downsides, the costs, the horror stories. If I read the life expectancy over and over until the phrase “two years” was burned into my tear-filled eyes. If I knew as little about that baby now as I did about our twins back then, I’d still do it all again. I’d see it through. I’d give him/her/them a chance. Because no matter how your story unfolds, I believe you can never regret loving your child with all you have. Melody’s sons. A version of this post first appeared on Two If By Faith.