Sunday, August 30, 2009

Waiting for the Birds

Well, Ms. Moon... I gotta say... it's been interesting. As life always is, right?

I am really well and awful, too. I'm here, last day, with my sister. She's very sick. probably shouldn't be here but... one more night won't make a difference. Her night sweats and fever are back. Still in a lot of pain.

She's dying.

I think I realize that now. I don't think she can imagine the pain and struggle to get to another better place. She's still in the hospital, still in a horrible mindset and certain that's all that ever will be. Certain she's dying. No, afraid she is. She doesn't want to go back to her apartment so she'll be moving in with us. I can't say no. It may take a couple years but this is a certain decline. There will be no house on the lake, no living in Ogunquit. We're going to build an inlaw where the garage is and... that will be that.

She doesn't know how to fight. She never has. She's always relied on the kindness of strangers. I could get mad or upset or anxious. Why?

I can't say no. I just can't.

So school will start... we'll have a broken routine, slowly adjusting to this new person in our home. Very picky person, I might add. Some moments, she'll be a little better. Most, she won't. There will be more hospital stays. More treatments. Blood and puking and crying. I'll do it. I'll learn great things about myself, and some not so great things. I'll learn my limits and have them tested over and over again.

Sometimes, I'll give, sometimes, I won't.

She said to me the other night, as we were talking about my ever so brief move to Rochester, well... now you have a foundation.

I said, it's ours.

She smiled and said, well... you know... really, it's yours.

I thought about the sailboat my friend's dad built her. I have my own, I realize. My mother wanted me to take care of my sister, expected me to. She always said I'd be the one.

And I am.

I realize she's dying. It's not going to be quick. It's not going to be easy. I will have to be very mindful of my kids, my wife. My friends. Stay full with things that feed my soul. We will all have a deeper understanding of who we are. Jeanine reminded me that her father was dying in her sister's house and the two boys, our nephews, really did come out with a better understanding of life. No one should die, but we all do.

It's the last day here. The leaves are starting to turn. It's sunny but cool- that nip of fall has taken over. I'm eager to do more shareholder work with the foundations assets. I have much to write about.

In a few minutes, I'm going back in the house. Sit by the fire with my sister, who is freezing, as her temp is too high, yet again. I'm going to tell her she never has to go back to the apartment. She can stay with us. Always.

But for now, I'm going to watch the waves crash on the shoals in the deep water in front of the house. I hope the Turnstones, small birds that migrate here every year at this time, do a circle again- they are white and brown and fly in a tight flock, turning in the light, they shimmer then fade, then shimmer again. I saw them this morning. I hope to see them one more time.

Everything is good. And awful. I'm holding all the good, the love, and the sadness.

All while waiting for the birds.

I'm Alive

Sorry to have been out of touch. I'm in Downeast and Allan kept the power off all the time.

NO POWER, he kept saying. RED RED, which means both the battery lights are on empty and turn the damn thing off so it can recharge.

I have a lot to say... it's been quite a time up here but I am, alas, running low on power again. I'll be back tomorrow so plenty to read soon.

Donald told me I had to say at least that I was alive and everything was ok. I am alive.

Tuesday, August 18, 2009

The Roller Coaster

I can hear the sound of a roller coaster, as you start up the first hill. Clack clack clack... get ready for your ride...

My sister has been having a low grade fever since she's been home from the hospital. 99. 99.5. Mind you, she's on constant tylenol.

This means maybe the lymphoma probably wasn't stopped. I know it means that because that's what the oncologist explained before the surgery. If she continued to have a fever, night sweats, she would need more aggressive treatment.

No, I'm not flipped out. Just sad. I had a conversation with her the other day and she said to me, I have five years, tops.

I said, oh c'mon, you don't know that... and proceeded with my best cheerleader speech.

She said, nope, I'm telling you, I just know.

She wasn't upset or morbid. She simply said she wanted to see the land in downeast we know about and put her RV there. Remove the clutter in her life, and soak in her family for the next few years. She was very calm.

I'll be calm with her. The news about the fever isn't good. the biopsy is still not done on the spleen- it was so large, and so much to cover, the doctor explained, it will take longer.

I have the weirdest feeling lately. I feel something shifting inside me. I can't quite explain it yet. Part of it was the time before and just after sister's surgery. I drew boundaries effortlessly, took care of myself. That's never happened before and yet it felt like a pair of worn in shoes. Fit just right.

A part of me, let go. I wasn't at all afraid, nor did I feel powerless. Perhaps a chunk of the armor fell off. Maybe I'm shifting to a place where I don't need to be right- on a deep level. I don't need to be good enough. I don't have to follow rules that don't make sense to me. It feels strange. Peaceful in a way I've never felt before. Yes, my sister is dying. I don't think she only has five years but she does have a terminal disease. She will not live to be 70.

I need to stop the cheerleading. I need to simply hold it with her.

And I also need to be with my family and friends and live and laugh and go swimming, and fishing and love as deeply as I can.

I can hear the wheels cranking. I can't stop the inevitable news, then the inevitable no news, dates, schedules, treatments... I can't change any of that. But I can change how I ride.

Maybe that's all any of us can really do.

Friday, August 14, 2009

Missing My Babies

I miss my kids.

I miss Zachary and Jake.

I miss the noise.

I miss the fighting. Okay, maybe I don't miss that too much.

I miss making fried egg sandwiches.

I miss having their friends over.

I miss watching them play spy games.

I miss beating them at video games.

I miss watching them eat ice cream.

I miss the incessant questions.

I miss the goofy silliness at dinner time.

I miss swimming in the ocean with them.

I miss watching the Red Sox with them.

I miss walking down the beach and hearing their observations about the world.

I can almost say I miss watching iCarly with them but ... no. I don't miss that.

On Sunday, I get to go visit for four hours. It's a manly man camp and it's Dad's weekend. Walter and Allan are spending it with them- lucky boys, they don't have to share a single dad as they have two. Women are only allowed for four hours.

See, we make the kids homesick. Moms. We have our ways. Besides by Sunday, we won't smell bad like the dads.

I just miss them.

Thursday, August 13, 2009


"Midlife is not a crisis. Midlife is an unraveling."

A friend showed me a link to a new book being written by Brene Brown, called Wholehearted: Adventures in Growing Up, Falling Apart and Finding Joy. It hit home. An unraveling, she explains, cannot be cured or managed.

It is what it is. She writes:

"Midlife is when the universe gently places her hands upon your shoulders, pulls you close, and whispers in your ear:

It’s time. All of this pretending and performing – these coping mechanisms that you’ve developed to protect yourself from feeling inadequate and getting hurt – has to go. Your armor is preventing you from growing into your gifts. I understand that you needed these protections when you were small. I understand that you believed your armor could help you secure all of the things you needed to feel worthy and lovable, but you’re still searching and you’re more lost than ever. Time is growing short. There are unexplored adventures ahead of you. You can’t live the rest of your life worried about what other people think. The time has come to let go of who you think you’re supposed to be and embrace who you are."

Um... yes. I realize that. How to change it, though, is an entirely different thing. I love these kind of inspirational, oh my god, yes, you get it books.

But then I'm stuck with the armor and how to take it off. She describes is as death.

"Many scholars have proposed that the struggle at midlife is about the fear that comes with our first true glimpse of mortality. Again, wishful thinking. Midlife is not about the fear of death. Midlife is death. Tearing down the walls that we spent our entire life building is death. Like it or not, at some point during midlife, you’re going down, and after that there are only two choices: staying down or enduring rebirth."

For me, the role of caretaker at whatever cost has to end. I must let it go. It does not keep me safe, nor does it lessen the shame. I still feel inadequate- a bad daughter. Always a bad daughter. I'm tired of it. I will never be any better than I am. I will be someone who can hold enormous amounts of pain and have empathy for others AND my kids will always come first.

I can't fix everything. In fact, I can't fix anything. I'm tired of trying.

In reading her passage I realize I have been inordinately tired lately. Not able to do my usual exercise, I've been quick to take an afternoon nap. I can't seem to get myself pulled together anymore to do the things I know make me feel better: cooking a great dinner, cleaning off my desk (and not by dumping everything in the bottom drawer of the filing cabinet), or finishing off a project long in need of doing.

I resent all the work I've done for people who don't for one second appreciate it. Trying to get acceptance from some who will never give it, no matter how kind or wonderful I am, or try to be. Maybe I am the selfish ass my mother accused me of being.

Maybe that's okay.

A friend said to me, after turning 50, that she was amazed at how she suddenly didn't care anymore what people thought of her. She was who she was, take it or leave it. I'm not there yet. I can only say I want my energy back, I want a life that doesn't feel like work all the time.

I am lost. Maybe more lost than ever.


Wednesday, August 12, 2009

Back to Life, Back to Reality

My sister will be discharged tomorrow. She's fine. A little difficult, like the sun is a little warm, but overall, everything was a huge success and she's fine.

I took off to Maine for a few days with Ben. This was a week we had planned on being up here together, so we're here.

The first night, I could tell he missed me. He kept stealing sips off my coke, and babbling non-stop about different music artists new songs.

None, I can be certain, that I would ever want to hear. Boody, boody, boody. No thanks.

We hung out and watched the teen choice awards. I gotta say, I have not seen such a group of talentless people before in my life. And did anyone see Britney blow off Miley? We discussed that for a long time over our bowl of popcorn.

Ben has mastered the zen of tanning. I must admit, I have been his teacher. After ample gobs of sunscreen, we go sit.

The sun does not move for you, my son, you must move for the sun.

The water is a balmy 66- and I'm serious, that's balmy up here- so we were in often, even though the waves were not the best. Today, while swimming out way over our heads, he told me it wasn't much fun.

But Ben... I would never let your brothers do this!

I know but... it's just so quiet. I miss the noise.

Want me to scream?

No! That would be so awkward!

We trudged back to shore, to our mediation mats- also known as beach towels.

You miss your brothers, don't you?

Yes, he said.

Can I record that?

NO! I don't really miss THEM, I miss... the noise.

Uh huh.

Mom, don't tell them I missed them.


Later this afternoon, I was out cutting the grass. We have a patch of grass that is so small, I use an old fashioned rotary blade- no engine. No need. As I got to a thick patch, out came a 50 foot, garden snake with giant fangs.


I screamed.

Ben came running out. What is it?


I know you won't believe me but REALLY this is a shot of it.

After he was done laughing, I said, see? I can be loud.

Not really the same, Mom.

Maybe it's not really the same but I did give it my best shot. Not on purpose mind you, but I was loud.

Finally, life is starting to get back to normal again. I couldn't take much more of the smell of the hospital, let alone the timelessness of being in one. My sister is well cared for and I took a break. Only a few more weeks of summer until the most blessed event of every mother's life: the first day of school.

We'll see who is screaming then!

Friday, August 07, 2009

Quick Update

I'm on my way back to the hospital...

My sister made it through fine. Everything went well. Being the poster child for Murphy's Law, however, she had to give us a little scare last night by continuing to bleed and having her blood pressure go down down down down down...

Seems to have evened out. She spent the night in the ICU and if she thought the beeping in the recovery room was annoying, well, she has another thing coming.

Finally, she has a huge weight removed. It's going to take a few days to feel good but I hope she gets a second chance.

Tuesday, August 04, 2009

Barbed Walls

I watched the curtains move silently with the ocean breeze. They are worn, having decades of sun bleach away the once colorful daisy pattern. A testament of perseverance, I could take a lesson from them.

My sister is having her surgery on Thursday and hearing the certainty, I broke down. I don't want to lose my sister. I don't want her to be so frightened, nor do I want her to be drugged to a point of not caring.

She is a little, terrified girl facing yet another barbed wall to climb.


I see my own life, flush with beautiful things, magnificent doors opening at every turn, and I can eye my past with a deep sigh of relief.

Never again.

And yet, it happens over and over again to my sister. Perhaps that is why she believes in god. All the pain and suffering get handed over to a higher being- it's god's will. Which is why I cannot believe in god- how can such a all powerful being let horrible things happen to children? Adults, well, maybe we've earned it in some unknowing way but not children.

We were children. My father's sickness may torture him to his death but we weren't broken until he came along.

Why does my sister continue to suffer? And I do not? It reminds me of a friend of mine. Someone shattered by abuse who continues to live a life full of pain. Friends die, cancer appears, over and over, she walks up to barbed wall after barbed wall, as if the goal in this life is simply to survive.

There have been times I wondered if she sought out the pain, the familiar repetition, the allure impossible to resist. If it hurts, it's real. If it doesn't, then it will, so why wait?

I don't see my sister doing that. I see her repeating a pattern, desperately waiting for new results. Someone to love her, be kind to her, be a knight in shining armor to take all the scars away.

No one can do that for you, I have said to her. You have to do it for yourself.

It is an odd place to be, as a survivor of abuse. You have to heal yourself, ultimately. Only you can confront the voices that lull you into believing you deserved it, that somehow pain is comfort.

Love. Pain must be love because why else would anyone have ever done that? It's a child's reasoning that never goes away.

How did I find a place to be safe enough to quiet the gun-toting suicidal voice and let good people into my life? It sounds like survivor guilt but it isn't- more of a wonderment. Maybe it was my mother's love; she did love me as much as she could- I know that. It wasn't always enough and sometimes made it hurt to breathe but she did love me. My sister was her failure, her competition for her husband, always needing more, never getting enough.

Why do I keep going back there? Because it feels so unfair. I'm furious at the world for doing this to my sister. Yes, people go through this everyday but hasn't she had enough?

I watched the curtains and I knew I couldn't cry anymore. I can't make anything better and time will tell if my sister recovers to a new place or not. I have no god to pray to, only my own strength to loan. I will be for her what my friends have been for me- healthy, loving support. Mindful of boundaries and kind in how I express them.

There has been enough spite and anger in her life. I will not ever do that to her.

And like my curtains that may see yet another decade, I will persevere through this. It is my lesson in this life. Holding the unbearable, the unspeakable, and waking up the next day unwilling to accept a row of barbed walls as my future.

Monday, August 03, 2009

A Special Kind of Person

A quick check in from Downeast Maine... For one, Donald brought some fabulous lobsters over last night and we devoured them.The shells were soft, and they were, as always, cooked perfectly.


Even though there was a huge fog bank and the weather was a tad chilly, we sat out on the deck and ate. We have a new table for the deck Walter brought up and we couldn't resist using it.

It's easier to hose down the lobster goo afterwards, too.

The sun came out today and Ben managed to sit in the sun for a while on the rocks out front. One long, huge hunk of smooth stone provided a perfect place.

I can't believe I fell asleep! he said.

That's what pure serenity does to you, I said. He scowled.

The whole cove is filled with lobster buoys. It's the time of year when no matter where you look on the ocean, it's dotted with the multicolored markers. Don't ever touch one, though. They have no problem shooting you and no one up here will feel bad about it.

I wish they felt the same about solar lights. The one Jeanine had put up last year on the bath house was stolen. the thing only cost about twenty bucks- not sure why someone had to help themselves to it but they did.

We had a meeting of all the folks on the point today at our house. Once a year, all the neighbors get together, chat, see who is alive, who isn't, who is in what house. It's very sweet. There is a raffle for a painting every year and the proceeds go to a scholarship for a local student. We had a report on the road- it's a fairly well maintained dirt road but with all the rain of late, it's been pretty washed out.

C'mon. It's Maine. We have no electricity. This is big stuff.

About thirty people showed up, young and old. The one thing that surprised me was how welcoming and accepting everyone is of our unique family. No one raised an eyebrow about our two moms, two dads, three boys family structure.

And some of these folks are OLD. I mean, coming in using walkers, canes, and just happy as can be to say hello, lovely to see you again.

Maybe it's the nature of the place- I mean, no one has hot showers (well, we do but shhhh), everyone makes do with what they have, trips to town are few and far between.

It takes a special kind of person to be here, one older woman said to Allan.

Indeed it does. And, from what I can tell so far, it doesn't matter if you are gay or straight. Doesn't matter if you have kids or dogs, or a boat, or kayak, or solar panels to run your computer. Just that you love it here, that you are committed to keeping this place firmly in the early 1900's.

We are. Very much so. Well, minus the hot showers and solar power.

I just heard from my sister- the surgery may be postponed due to bad scheduling by the doctor. We won't know until tomorrow. But if it is? We'll have a few more days in paradise.