3am Phone Calls

Over the last few days, Kilians grandparents and godparents finally met him. Each meet and greet held sadness, and profound realization of the weight of his situation. But somehow, the visits ended in laughs. Smiles. Jokes and pure adoration for Kilian. Something about that little boy just brings joy to your heart, and peacefulness to you soul. You can't help but smile when in his presence.

We've decided we want Amelia to meet her little brother. I've gone over this a hundred times in my head, should we or shouldn't we. On one hand, he's more or less a figment of her imagination. I think keeping it that way would save her some pain, as though Kilian never even happened. But he did happen. Regardless of the pain that has existed alongside the happiness, the happiness is still there. He is still here. And in my heart I know that she deserves to meet him.

This morning, a little before 3am, my phone rang. I know the panic that comes from hearing it is going to take forever to dissipate. The screen read Childrens Milwaukee, and I immediately picked it up. The thoughts that go thru your mind while waiting for whomever it is to start talking are endless. In the three seconds it takes for them to respond to your hello, every scenario plays out in your head on warp speed.

"This is doctor so and so, Kilian is ok.."

They always get that out as soon as they can. He is ok. It was soothing in the beginning, as your first thought is always, did we loose him? Now..I just wait for the but.

Kilian is ok, but...they experienced machine failure of ECMO. Something with the circuts. I used to write down every word of what they said, and now it seems so pointless. I used to ask so many questions, and now I usually have none. His doctor told me that while they figured out what was happening, his heart was beating on his own - but they did have to give him CPR. He advised me that the event lasted just a few minutes, and he is stable. He asked if I had any questions. And he told me to try to get some sleep.

It almost didn't phase me. I snuggled his blanket tight and tried to go back to sleep. The event, to me, just confirmed what I had been feeling the last few days, this is going to be the end. Kevin and I held each other, saying everything there was to say thru the embrace, without having to speak a word. We both know what is to come in the next few days.

Today, we're sitting outside in the solace of the world around us continuing on. Talking about what it's going to take to get Kilian up here for cremation, because I really don't want it to happen down in Milwaukee. Talking about a possible memorial service taking place after his benefit ride, releasing lit lanterns into the sky in memory of our baby boy. Laughing at the thought of telling them we don't need them to transport his body up here, we'll just wrap him up and bring him home ourselves. Talking about all the what ifs. What if he wasn't premature. What if the first code never happened. What if he had more time to grow before his surgery. And what if we had never met him.

We're happy we were given the time spent with him. We're happy we learned his personality. We're happy we have memories of discovering his likes, and many dislikes.

But the distainful feeling of why us, why him, is still there. Why don't we get to have our Kilian? Why don't we get to have our family of four? Why doesn't Amelia get to have her little brother? Why is he being taken from us, and where do we go from here?

It's now one in the afternoon. As badly as we want to get to Kilian, to soak in all the last moments with him, to make the most of this time left, savor every inch of that precious little babe, we can't move. We dread the conversation we know we are facing. We dread having to make the decision, even tho we've already committed to that choice. I dread the moment Amelia meets him, in knowing it will be her last. And I dread those final minutes, and what it will feel like when he is actually gone.

No words will comfort the grief that will come from loosing our child. No amount of time will dampen the agony we feel. But I also know, that nothing will ever remove the feelings of joy and love that our one in a million Kilian so graciously gave to us. Nothing will take away the memories we hold of our time spent with him. And peace is found in knowing he will eventually be home with us.

Maybe not in the form we so desperately begged for, but home with us none the less. Forever one of the best chapters of our lives. Forever in our hearts. Forever part of our souls, part of our family, and forever allowing the joy to bring light thru the darkness.

Because when you think of Kilian, you can't help but smile.



I love you Bub. More than I could ever begin to express. You will always be one of the very best things that has ever happened to me. And I will never, never forget you.