It's hard to believe that it's been more than a year since we first learned that our fourth child had serious problems with the way his heart developed. Much has changed, but much remains the same.
I have often fought with myself over how I felt about being pregnant in the first place. [I think] I hid it fairly well, but I wasn't thrilled at first, both with having a fourth child and with the timing of his arrival. I had my plans, you see, and they didn't allow for a newborn. (Oh how deeply-rooted my selfishness still is!)
I got over my bad attitude and shallow disappointment within a few days. We were all excited about welcoming a new little one, and Big Boy was insisting that we had a boy "because we already had a baby girl!" Then we went in for a routine fetal echo of the baby's heart. Instead we felt our own hearts crushed by the mac truck of his complex heart condition and discouraging prognosis. Swirled into my grief and fear was a crushing guilt. Was this punishment for my selfishness? Had my bad attitude done this to my baby?
I quickly realized that if it were that simple, teenage moms and drug addicts and adulterers and die-hard career women would be the only ones delivering sick babies or unable to conceive at all. Clearly that is not true. Something else was going on. But what? Why would God allow us to have another child with such devastating problems?
You might think, after 8+ years of experience with one medically-complicated child, I would have found some answers.
You might think that I would accept, without much struggle, that my life is not my own and all the plans I make must be qualified by "if God allows."
You might think that I would have asked "Why" enough.
You might think that I no longer wrestle with anger when I hand my kids over for yet another painful procedure or when we confront something they cannot or should not do.
I have to confess that you would be wrong.
While I have fleeting moments of tranquility, that quality unfortunately does not [yet] characterize my inner thought-life. Despite the intense focus required to keep up with it all (or the fact that this year I'm officially beyond my capacity and am seeing a disappointing pattern of dropped balls), in my quiet moments (yes, I do have those occasionally), I still find myself wrestling with these same questions and the associated fear.
As we drew nearer to Little Boy's big surgery, as Elli and the rest of the family fell ill, and as Elli went into a [relatively minor] surgery on Friday, the fear and the heart-armor I wear grew thicker. It thickens with every tragic story that comes our way - both the big ones like earthquakes in China crushing school-children, and the smaller ones like the struggles and losses experienced by other heart families we know. In the past six months, death seems to be everywhere. It's been there all along, I suppose, but somehow it seemed easier to ignore before.
Our story hasn't turned so tragic, yet. I can see God working in the details of every changed plan, every new direction, and every unexpected development. Our family received good news over the weekend -- it looks like Elli will not need open-heart surgery this year after all. The procedure on Friday bought her some time and, in a first for us, has simplified the year significantly. We'll be able to focus on Little Boy (new surgery date is currently July 29 and 30).
The fog of fear has thinned somewhat, but it still swirls about my ankles and curls up to tighten around my neck periodically. Elli has been bleeding too much the past couple of days, developing a very large and painful hematoma around one incision and bleeding from other places for hours before finally forming a clot.
I find myself praying this a lot: "God, I don't know what to do. I don't know how serious this is. Please show us whether to call the doctors, help us describe accurately what we see, and help them to give wise advice."
But even more often than that, I cry out, "God, I see all this happening to those who love you and to those whom I love. It looks for all the world like You don't care or can't intervene. I want to believe in your goodness and sovereignty. Help my unbelief!" Because I know that the root of my fear and questions is doubt and a failure to believe. In the face of the relentless extreme needs of my family, I get worn-down, stop thinking clearly, and catch myself listening to the doubts whispered in my mind's ear.
Rather than pretend that this isn't happening or stuffing those doubts back down into the crawlspace of my mind, I'm trying something new this year. It seems to me that refusing to face them actually gives them a new lease on life. They grow in size and breadth, haunting the quiet spaces, the alone time, and the dark.
So instead, I'm confessing these doubts to God. Out loud (but only when no-one else is around). I'm bringing Him my questions. I'm sharing my fears. I'm also reading, both the words of Jesus and the testimonies of others who've walked faithfully through far worse trials. My pastor loaned me a book last week, "Living in the Hope of Glory" by Adolphe Monod, when he came to visit us in Elli's hospital room. I'm trying to force myself to finish one more book before I dive into this one, but it looks very good.
The back cover reads, "Adolphe Monod was one of the greatest French preachers of the 19th century. Struck with terminal cancer, he presented from his med a meditation on the last twenty-five Sundays of his life. [His] dying testimony is instructing, enriching, and inspiring. Here, the suffering Christian will find an uplifting companion. Minister will profit from this sound pastoral theology. Christians who read this will be encouraged to seek a richer intimacy with our incomparable God."
