questions that have no answers

 Brain trauma is unique in a way that only those who have lived it can understand.

It is not a steady decline. There are peaks and valleys, surges and outages - sometimes within days, sometimes within ten minutes. Nothing is predictable.

Nothing.

So two days ago, when Rico was having a really good surge, we made phone calls. We sat out in the sun and listened to Hawaiian music. We made plans for a luau and ate cake from our good friend Michael. We held hands and watched a movie and told each other a million and one times how much we loved each other and how even forever wouldn't be long enough.

We made the most of those few hours, because I knew that by dinner time we might be back to mixing up sentences, losing words and wondering where we are. 

Glioblastoma is the worst.

The worst.

Because even before it kills him, it steals him from us. It forces us - the people who love him most -  to watch his tortured scramble for words, memories and even the most basic control over his own body - like talking, rolling out of bed or even swallowing.

It's a dark and terrible place for anyone to live - let alone the love of your life.

So when he asked me tonight "Should I try to stop?"

"Stop what?" I asked.

"Try to stop - stop - living."

I didn't have the right words. I knew what the right answer was - the correct answer - the humane answer. But it took me a few seconds, and every ounce of strength in me to give it. Some questions have no good answers.

I climbed over the rails into his bed. I wrapped him up in my arms and his favorite blankets, kissed his head at least a dozen times and told him, "Honey, you do not have to try to do anything anymore - nothing at all." I gulped air between my words as if somehow the oxygen could eclipse the feeling of my heart falling out of my body. "Sweetheart, if living is too hard, if it hurts any part of you, even your spirit, it's ok to stop.  You have done a beautiful job of loving us and taking care of us and you can go if you need to. You will be ok, and we will be ok. You do not have to keep trying."

"But what if I am afraid?" His voice is weak but he's listening and I'm really trying not to blow it. I'm literally clenching my jaw to stop the quavering in my voice. I want him to hear confidence.

"It's ok to be afraid, because it will be a really big adventure, and you'll have to start it without me. But you won't be alone. Your Grandma Leah will be there with her big, warm hugs. My dad will be there and you know how much he always wanted to take you on an adventure. You'll know you're in the right place because you'll hear Alisa singing. Plus, you'll get to know the answers to all of the little questions that used to drive you crazy about life here. You'll finally figure it out. "

"That sounds nice. You sound really sure about this." 

"I am." 

I'm not. I'm not sure about anything anymore.

He is quiet for a while. he has been quiet most of the day. The glio is sneaking up on him, but it's there - it's just swallowing him slowly.

"If, if I don't wake up tomorrow," he asks, "will you be happy?"

This one breaks me. There are no words for how shattered I am. "Happy" is not in my vocabulary right now. It is not enough for me to just be ok, he needs me to be happy.

I don't tell him that I never knew real happiness before him, and I may never know it again. I do not want him hanging on for us, for me. So I tell him this, "I am happy every single day that I get to kiss your face and hear your voice." He smiles. His eyes are closed - they are mostly closed these days - it takes too much energy to see. "But," I tell him, "I will also be happy when you are not suffering like this, when you don't feel confused. I will be happy when you can visit me in my dreams. When I can see you walking across the beach without a brace, when you can grab me with both arms and spin me around by the ocean. When I can hear your strong, decisive voice tell me you made it, and that you're making a place for us. That will make me happy too."

He smiles at this too. This is his real dream. This is his heaven.

"I will miss you so much though," he tells me.

"I will miss you so much too," I say, "you're my favorite part of life."

"You are my favorite too baby. Do you talk to God about me?"

"Always."

"Good. I like that."

He is falling asleep, the Seroquel, Morphine and Ativan are doing their job. I can only pray I've done mine, and that tomorrow I might get one more chance to hear that voice.