Like Groundhog Day but Without Bill Murray

Friday we headed back up to Children’s Mercy Hospital in Kansas City for a follow-up visit. Thursday, the climate prognosticators were saying that it might snow after 11AM. We left Springfield at 6AM and intermittently drove on skating rinks to Bolivar, after which the road conditions improved. With allowing almost an extra hour of drive time, we made it to the Fetal Health Clinic just five minutes late, glad to have arrived safely.

The next two and a half hours were a study in deja-vu. I think both of us were pondering the torture of weekly or bi-weekly trips to Kansas City where an ultrasound would show the same heart defects and the same slow heart rate, which would be followed by the tortured attempt of a cardiologist to sound human while explaining the complexities of human cardiac anatomy to us. All the same, when the ultrasound technician began and located Penny’s heart, I found myself rooting for her with the same intensity I imagine myself feeling were she playing basketball. I wanted to see that heart beating in rhythm, and for a moment it appeared that it was. But it was not.

The cardiologist confirmed that the heart block (the condition where her natural pacemaker is not functioning, causing the upper and lower chambers to have no communication) is still present and poses a high risk. And on top of that, there are the structural abnormalities that will require surgery to correct. I couldn’t watch the screen the entire time. I answered emails and read articles. For a while I watched the little valves in her heart jump erratically and willed them to syncopate, but it became too much. There’s really nothing we can do, except pray and hope and believe. Apart from a miracle, she needs to make it to full term to have any shot at surviving having a pacemaker while on a heart and lung machine to oxygenate her blood, and then she has to survive at least one heart surgery after that. “We’d like you to get to know our palliative team during your next visit” was brought up. Fortunately, that will not be for another four weeks as we can monitor her locally, assuming there are no changes in her condition.

Is it insane to love a child I have never met? I have this recurring daydream where she sits in a bassinet and listens to me try to learn the piano with a sympathetic yet slightly condescending look in her eye. Her future seems so real to us and we want to bring her home.

The hospital is becoming slightly more familiar to me, but there are folks there who are clearly regular visitors. There was the mom walking in her girl of maybe twelve years who was bald and skinny and fatigued from the walk between the elevators and the entrance; the battle between the cancer and the chemo within her had drained her vitality. There were the parents whose children were too weak or malformed or diseased to walk at all and they rode in little carts. This hospital is a war zone where life daily battles death and the love of parents finds hope in the skill of doctors to save a child. Oh, and there’s a coffee shop. Weird. Katie and I are certainly not alone in our suffering.

Why do we love our kids so much? We love our children because we were created by a Father. This is not evolution or instinct or genetics: this is our Nature. And in this messed up world of pain and sorrow the hope we have is that our Father has not abandoned us, but has sent His only begotten Son to rescue us, though that meant His death. “What kind of love is this?” John would wonder. A love that sacrifices a Son to save a rebel. It’s a love that is even more amazing now that I am a father. Humanity is certainly not alone in our suffering: God has suffered in our midst.

So we are back to where we started. We have been told again what we already know. Penny needs your prayers. There’s not much else we can do except wait and trust. We are planning on bringing our little girl home, just like we brought home our other children. But I’ll share something that happened last week, and you can read whatever you like into it. I fell asleep around 10PM on Sunday night and woke up with the strongest feeling of peace in my heart around midnight. I had either dreamed or contemplated in the twilight between sleep and wake two things, and I could not tell whether these two things were consecutive or simultaneous. In one, Penny was born without the severe heart defects that had been diagnosed and we brought her home healthy. In the other, I imagined myself typing the words, “Penny has been healed” on this very blog. But I knew in my mind – in that way you know things in your dreams without knowing how you know- that what I meant by this was that God had welcomed her into His arms and she was safely with Him. In that moment of peaceful clarity, I knew that one way or another, Penny will be going to a home where she will be most welcomed and most loved. And that’s enough for me.