Suffering

I have not wanted to write the past few days. I have debated taking my thoughts to my private journal unsure of how I really am feeling would be received by just anyone who feels like reading this. Today, this is my space and I write the truth of my own experience allowing for my struggle and believing that integrity in revealing the reality of that struggle will be more valuable than saccharine words that are untrue.

I have been in emotional chaos, spinning since week 33. The weeks prior to this one actually seem "good" to me compared to this last week. I feel unanchored, tossing unmoored in a tempest. Who has let go? I wonder what I was hanging onto before? Was it really Christ? I have grown fearful the longer I continue to be pregnant. People thinking they are offering me hope and saying that Sully could live (fill in the blank for whatever random length of days seems appropriately hopeful to them)shatter my already broken self into a thousand more tiny pieces.

What do I mean? Don't I want Sully to live? I follow the red flag of my fear and probe into it. Here it is. Here is my heart. I am terrified of this baby "living". The longer he survives, the stronger his kicks inside of me, the more anxious I get that it will be what God asks of me - to care for an infant more needy than anything I could bear. Our pastor tells stories of husbands caring for invalid wives and parents loving children like Sully, and I know it is supposed to be a picture of God's love for me but I just think how unlike them I am. My love is so limited and I don't know if I could ever be as "good" as those stories. I struggle so much with my own weakness, with the weakness of my "perfect" children, with weakness in other people. To care for something so weak, to love something so weak, to be so weak myself will grind me into dust. Were the people in my pastor's stories just as limited as I am? What made them able to love the way they did?

And what of this loving God? I find it interesting that I question him now that he isn't following what I have deemed merciful. Isn't the fact that I must carry this child and lose him enough suffering? Shouldn't I at least be able to decide my own terms for bearing such a loss? I see that even in this misery I have set myself up as my own god in my heart. I still battle for control of the kingdom of my life and my loss.

Do I want this God, this mysterious and strange God that isn't playing according to my rules? I have begun reading Joni Eareckson Tada's When God Weeps...interesting reading for anyone but especially in the midst of suffering. I have ignored her warnings to readers that perhaps should lay the book down for a time if they are "reeling from unspeakable loss, choking on the bitterest pill, heartsick beyond comforting and unable to look upward". I plow through anyway because I believe what they tell me on the back of the book - that they will "probe through the glib answers that fail us in our time of deepest need." That they will "reveal a God big enough to understand our suffering, wise enough to allow it - and powerful enough to use it for a greater good than we can ever imagine."

And that's where I am right now - in the "wise enough to allow it" part. What strange doctrine to be sorting through and how many truly "glib" answers have I loosely let satisfy me for so long. And even stranger to me is the anchoring I feel when I do say, OK God, you have placed me where I am. You have given me this baby with Trisomy 18 and you have called me to struggle as his mother. I remember the comfort of Psalm 139 about God knowing his length of days and forming him in my womb - God knew - God allowed - God, yes, this God I say I believe in, let my child be created with his faults. Medically it is the most unlikely odds that we would have a child with this abnormality, but as I read I am pondering that truth may be that it is God who controls even the odds and "coincidences". He is bigger than I have believed him to be. If Sully lives any number of days, it will have been ordained by God. It will not be a surprise to him but His will. This seems so bitter, but for a moment the spinning stops and I find rest. I don't get it, but my heart is desperate for peace...