Beauty In The Broken, May 28th Update (Post OP Photo)

**Warning..Post OP Photo**

We are patiently waiting for Kilians lung to work. Today, he got a new vent tube that will create a seal for the air going into his lung. It's a delicate balance of giving enough pressure to open his lung up (it's more or less collapsed), but not so much that it causes more pneumothorax (air around the lung) or blows his sutures. If this works and his lung functions in the next day or so, he will then go back into surgery to have a stint placed in his heart..a stint that we are awaiting FDA approval on to be used.

We're giving him a few more days, as he's actually doing pretty well despite his immediate issues. The edema and swelling has come down a great deal, to the point where he looks like himself again. His kidney is working great, his blood pressure is decent, and overall his stats are showing us he's still trying his damndest. We're really playing with fire here with how long he's been on ECMO, but he just isn't showing us any signs that he's ready to give up, so we won't either.

I've said before, the emotions that come with this are wild. Hour to hour, minute to minute. I can't decide how I think this is going to go. I keep thinking, what is my gut feeling? What is my mom intuition? And I just don't know.

Right now, I feel like Kilian is not going to make it. Yesterday I thought he really might still have a chance, and was so hopeful. The day before that, I felt the grieving process beginning, as I was positive he is not going to pull out that last trick from his sleeve.

And it's aggravating. You feel like you should know. You want to know. The waiting and anticipation for an outcome drive you crazy, and it all sits in the pit of your stomach - a mixure of physical pain, nausea and anxiety.

Time doesn't exist, your life before all of it doesn't exist, you don't exist. You have an empty fridge, in a house that serves no more purpose than the hotel room you slept in the night before, and there is one single thing that drives your motions - getting back to the hospital.

At this point, everyone pisses you off. For real. As harsh as that sounds it's just the truth. If someone says, I believe he'll pull thru, I want to scream at them 'no he won't don't you understand what's happening?' And when the doctors say, 'it's not looking good' I want to scold them, you don't know that because you don't know him.

And the words 'I know how you feel', trigger every single person who has ever heard it. While the sentiment is well intended, it's just never going to sit well. Especially with people who are struggling over those really tall mountains. No one can ever truly feel how someone else does. Even if they are going thru the exact same thing. People are different, I think we all agree on that. So it isn't possible for anyone to know what another person is going thru completely. And when the statement is made, it just makes that person feel like you don't understand.

You find yourself feeling guilty for EVERYTHING. You feel guilty when you're at the hospital for not being home. Guilty at home for not being at the hospital. Guilty for being mad at people who are just trying to help. Guilty for every feeling you feel, because those feelings make you seem ungrateful.

You wish it would just end. Whichever way it goes. It's exhausting and you wonder how you can possibly keep going. All. You. Want. To. Do. Is. Sleep. FFS just a little sleep! And then as quickly as that thought came you take it all back and beg whatever it is you believe in to please not let it end.

You struggle to find distractions. Struggle to think straight. Struggle to find peace in knowing you have absolutely no control over the situation, and are completely at the mercy of 'whatever will be will be'.

It's all maddening.

And somehow, if you look hard enough, there is beauty in it.

There's good moments, and good days, and you see little glimpses of normalcy here and there that keep you going.

It may be hard. It might suck. It might completely devastate you, to a point of finding it impossible to move forward in a world that is so cruel. But you remember the laughs you had, the moments that were turned into beautiful memories, and all the good things that allow you that deep breath, and even if only for a moment, relief.

It WILL be ok.

There has to be a reason why this is happening. I refuse to believe otherwise. I have no idea what it is. I have no idea whats going to happen. And I have no idea how I'm going to handle any of it.

But I do know what Kilians eyes look like. I remember how it felt when he looked at me. Like really looked at me, and I caught his gaze and we just stared at each other. I remember what his little hand holding my fingers feels like. I can feel how soft his golden blonde hair is. And I see all the beauty of who he was, who he is, and whoever he will be.

There is beauty in the broken, so long as you allow yourself to see it. Choose to be happy. Choose to appreciate. And choose to keep walking forward. Life is what you make it, and I will never think of Kilian as anything other than an amazing gift. One I will always hold on to, forever cherish, and never forget.