Thursday, December 11, 2008

"I think we lost her"

We keep waiting for tests to quantify what we're feeling, my dad and me. He's by her bedside and I'm getting the regular updates via phone. Checking the plane schedules but not really moving forward until we hear more tomorrow. The doctors keep saying it's not time to come, but I'm knowing it is. We'll likely leave tomorrow, after more tests come back. Perhaps either way, as it doesn't feel right being away.

This might sound strange. But I think my dad and I are in this similar place, feeling like my mom paved the way for a really easy decision about what to do about things like life support. If she can't come out at 100%, we both know with all our hearts she wouldn't have wanted to come out at all. To a lifelong wheelchair. Nursing home. Tracheotomy. Brain damage. While the data on the brain scans haven't come back and aren't quantifying things, I can't help but wonder if behind that comatose state, my mom is making a decision to stay hidden away.

She lived in fear about how she would spend her final days. I think she pictured a long, miserable, painful demise from her dystrophy. What if they come back and say there's only a 50% loss of brain activity? That they can bring her back at her half-self? I can almost hear my mother shouting from the bed...oh, she'd be so mad. After her first surgery, she was lucid and talking. At that point, it was about the steel rod in her leg (because her bone was so shattered). My dad and she were eating sherbet together, and she asked: "Will I ever be the same?" My dad assured her she'd be fine, but then she hasn't woken up after the second surgery. She's not breathing or eating on her own at all. So the answer now, just days later, is a very different one.

How much of the ability to live is based on the will to live? How much of the not waking up (even though the doctors can't give reasons right now) is from some decision-making process inside her soul that knew where she stood and said, "Nope."

The sadness at the loss of my mother is overwhelming in the selfish sense. I want my mom. I want to call her and tell her funny children stories. I want to go shopping with her for the little girl clothes she couldn't wait to buy Simone. But the part that loves my mother so deeply also wonders if I even wish her back if she'll never be herself again. She had such an honesty about that fear. She wasn't afraid of death. We all knew she had a limited portion of time and lived that way. Made memories with her. Threw her a huge 60th birthday party. My dad took her on cruises in Alaska and Hawaii. She was writing books for us for after she died.

Death didn't scare her. Living a painful end did scare her, and the thought of what her life might look like in the end. With that knowledge, it seems so selfish and short-sighted to wish her back. And yet, how can you wish AWAY your mother? That riptide of emotion is stronger than any grief that I have right now...perhaps because things are still so unreal and uncertain.

I'm not sure what to feel right now for my own self, but I do feel a true sense of peace about where she's at. Part of me wants to sit beside her and just let her know it's okay to go if she's scared to fight through this - and what would be on the other side. I know her well enough to understand that fear. That those of us that love her so much know that this might be what she needs to do. And we'll support whatever that means, even if it hurts like hell inside.

Jessica had her baby today. Dawn had hers yesterday. Holding Simone today and rocking her, it seemed so strange to think of that unbelievable cycle of life. I was in the hospital this morning, seeing the tiniest of human beings. Her baby was so perfect and preciously new. And to think I might be in a hospital again in just a few days, watching someone at the end.

Is this the end? Have I had the last conversation with my mom I'll ever have? And what was it about? I can't even really remember. Was it when we were talking about Christmas gifts for the kids? Was it the one about the train table for the boys? No, surely not. We've talked more recently. Was it one of my regular phone calls about silly stuff the boys said? I want to rewind things so I can take better notes on these last few weeks.

My dad sent a package to us with cards from people. I opened the one from my parents today, and it was a birthday card for Andrew. My mom wrote it just last week. I started crying, thinking that this might be the last handwriting from my mom I'll ever have. How quickly life turns into a precious commodity.

I love you so much, Mom. I'm aching to see you soon.

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