Two babies died on our hall this weekend, and a third will be taken off ecmo in the morning. My baby is still alive. I walked past a newly emptied room this morning; it was sanitary and disheveled, sunlight pouring in so indifferent to the sacred act of passing from this life to the next that happened there short hours before. Back in my room I could not help but wonder what tears and pleas and desperate fights have taken place in this beige and purple machine crowded cubby. What other babies have laid just as still and helpless and my Kit in that bed.

Driving between my house and the hospital yesterday, a rush of anger and questions and this tempting thread of thought— what is it is all made up, of God is a story. That isn’t a new thought for me, but one I discard, one that would lead me through a mirey pit of nihilism until I crawled back out, breathless, exactly where I started.

Instead I think God is either real or not and I choose to have faith. If then, I have faith, I come to the other sticky part— does God love me or is He indifferent? There is much evidence, globally and personally, pointing to the latter. But again faith draws me to believe God Does love me and I don’t have to understand all of this, these babies born to suffer and die, these families up here every day hoping to see a change that never happens.

I can’t understand it. I think sometimes about Kit’s genes and how easily God could have prevented her deletion and why did he allow her to be created in the first place and to survive in the womb and to survive at birth? But I guess you could ask that of anyone, why are any of us here.

I pray for her. I rest my hand on her head, some of her beautiful, long auburn hair worn off where they stuck IVs and I pray that God will save her. I know too that I have to accept that for some reason this is God’s will. I do not like it, I do not understand it, but I accept that this is just what is happening in my life and I have to keep going, I have to keep driving back and forth, asking questions, softly running my fingers through her hair. Somehow this will all be for good, and somehow God still loves us.


Kit’s Gofundme

So we are working on getting Kit to California this November for her open heart surgery and decided a GoFundMe may be the best way to help that happen–if you want to share and support, here is the link:

Kit’s Fight Against CHD

We are already humbled at how much our community, friends and family have stepped in to help–if I’ve learned anything the past couple of years, it is that sometimes you have to let people help you.

i heart kit: a new writing project

i heart kit

In one of the countless late night feedings for Kit, I started daydreaming about a new writing project to spread CHD awareness and Kit’s story–so I started I Heart Kit, an instagram-poetry-blog about Kit’s fight against CHD.

I’ve always resisted sharing my poems online since I always hope to have them published in journals at some point, but lately I’ve felt frustrated with the slowness of that process and have realized that my target audience for these poems about CHD are not other poets or academics but other parents and heart warriors, those who are in the thick of it too. I want to share poems that will be read by the people they are written for; I want the poems to be read, in this desperate sort of way I want them to be related to, so I don’t feel so alone in all this.