Sunday, January 11, 2015

A Very Different Question

He hangs up the phone and relays the latest and greatest catastrophe to me, as he has done every night for half a year. I rarely make the call myself; I've done it only a handful of times when he's out or away. I am too scared to hear the news. Somehow it is easier if it comes from him, rather than the doctor.

What a burden my poor husband, a former pediatric nurse, carries - to pass on the events of the later part of each day since we've left the hospital for the night. Sometimes it's only the results of a weigh-in or bloodwork; other times some serious complication has managed to arise in the few short hours since we were last there.

If yet again one of them is particularly fragile, or becoming increasingly ill, my question to him is the same:

"Will he die from this?".

What a terrible question for a mother to ask; and what a worse question for a father to answer.


An IV is in his head, with his endotracheal tube down his throat and taped to his face, along side his feeding tube. His eyes are closed and he isn't moving. He can't - he's been sedated in an effort to keep him comfortable. Every few minutes the tube is suctioned and more unexplained blood is removed. His lungs are hemorrhaging for no known reason. In addition to the multitude of blood transfusions he has already received and will continue to receive to help elevate his hemoglobin, he now needs one to replace the blood volume he has lost. He is very, very sick. Helpless.

Today, that baby is skiing.


He lies on his back, a multitude of leads glued to his head. His body reacted in an unfamiliar way last night so now they are querying seizures. He has just had a lumbar puncture - a needle inserted into his spine - to rule out infections. His brain is a mystery since he suffered a massive hemorrhage a few weeks ago. No one is yet sure of how his body will compensate. Will his brain swell, requiring surgery and a shunt? Will he have seizures? Will he be able to communicate? All questions we need to wait and see. He is so quiet and still, barely recognizable as a baby under all of the tubes and wires. Helpless.

Today, that baby is reading.


The question I ask their dad now is a very, very different one.

"Will they ever understand what absolute miracles they are?"

How blessed we are to see miracles unfold every single day.


  1. I remember asking that question. Your new question is SO MUCH BETTER!

    1. So much better indeed! Makes me so happy to think that's how far we've come!

  2. Oh man. This brought tears to my eyes. Today's questions are pretty damn amazing. :)

  3. I don't know if I've ever read a post that brought such tears to my eyes. You write beautifully, you have beautiful boys and I am so very happy to hear how far they've come.Thank you for sharing your amazing story with the world!

  4. Miracles who bring daily joy...I'm lucky to be part of it!