Fame

edited on 10/06/09 (I substituted faith for fame)

....FAITH
I'm gonna live forever
I'm gonna learn how to fly
High

...FAITH
I'm gonna make it to heaven
Light up the sky like a flame
...FAITH

REMEMBER
REMEMBER
REMEMBER

Sue reminded me of these lyrics. I think for Maura I should substitute another word instead of "Fame." But I can't seem to put my finger on the right word that goes with both Maura and the song.

Amanda, Part 2

Please pray for Amanda!
If you do not know Amanda, please take a moment to read here what I wrote in May about this wonderful young woman.

Update :
Still cancer free.

And now, pregnant. :)

(She just started a blog because Matt said she had to since he was in Korea and couldn't be here. You can follow her story at And At The End I Get A Baby.

 

Heaven

Here's the truth: Right now, the number one reason I want to go to Heaven is not to see Jesus or to share in God's everlasting happiness. I don't get excited about spending eternity singing praises of the Most High. I don't think about Heaven as a place where there will be no more evil or sorrow or pain. In my head I know it's all true, but I don't care. Not now. Now, the only thing that thrills me about Heaven is Maura. I'll get to see Maura again. And I know that God understands how I feel, and I can't imagine that I will ever feel differently. But I can wait. And so can God.
Steven Curtis Chapman suffered the tragic loss of his daughter last year, shortly after Maura got sick. At that time, I had to turn off the radio because it was too painful and frightening to listen to all the condolences pouring in to the Christian radio station that I listen to.
The video below is a song he wrote for his little girl that expresses similar feelings to mine. In a subsequent YouTube video, he talks about how the song came about.

Got Regret?

This week I have heard from many people who are grieving--either for Maura or for someone else--and regret reverberates throughout their stories.  I am blessed in that I have little to regret, although my mind keeps searching for ever more failures or omissions when I play the destructive "what if?" game or it's close relative, the "if I had only" game. What if I had paid more attention when Maura complained of cramps? If only she hadn't been misdiagnosed. If I had only figured out how to get to M.D. Anderson sooner.  What if she had not had surgery before chemo? What if we had, early on, rid ourselves of every toxic chemical in our house? Switched to a wholly vegan, chemical-and-hormone-free diet? Chosen a less polluted city to live in? If I had only known...everything I know now. Would it have helped? Would it have saved her life? Would it have given her--us--another year?

Despite that macabre self-flagellation, I have  little regret for the way I lived this last year with Maura, and that is a gift I owe to my mother. 

Joel once told me that, after my mom died, twelve years ago, he felt as if he didn't have a wife for two years.  That's because for two years after she died, I beat myself up for not having been a better daughter.  I hadn't visited her enough. I should have spent more time with her. I let my busy life get in the way of spending time with someone I dearly loved. I never thought of the day she would no longer be there. I had taken her for granted. I grieved,yes. But, even more painful, I regretted every moment I had wasted not being with her. Grief and remorse. I think that we pair those two emotions together so many times that we hardly recognize the difference. But I know the difference now. I learned a hard lesson with my mom, and I vowed not to repeat my mistake. I vaguely remember it as a a kind of potato-wielding-Scarlett-O'Hara-fist-shaking promise to myself. More than anything else, that is what fueled my insistence that I take care of my dad when his Alzheimer's grew worse.  I never ever ever wanted to feel the way I felt after my mom died, and I did not want to take any time with my dad for granted.  I worked at not taking anyone for granted...not always successfully, but I tried...I still try. That is how I absolved myself of the guilt. When my father died, the grief was more acute because he had lived with us for a couple of years, but the regret was nil except for a few rounds of the "what if?" game--I don' think there is any way to escape that. 

And with Maura? I worked part-time for ten months and took a leave of absence starting in February. At some level, I always knew that she would die, and I did not want to waste any time. I regret lots of little things, but none of the big things. I got those right. Maybe. The grief...the pure, guilt-free grief over Maura's death is agonizing enough. Adding remorse on top of it would be unbearable.

My recipe for minimizing regrets: Declare it "Opposite Day." Whatever you neglected to do, do. Whatever you did wrong, do right. If you refused to give blood because you are afraid of needles, give blood now. Better yet, go the extra mile and give platelets. If you didn't come home sooner to be with your dying friend, make sure you spend more time with your ailing parent. If you took a vacation instead of spending time with your sick loved one, spend an upcoming vacation helping others. If you regret not having shaved your head in solidarity with the one who had cancer, go buy a few wigs for current cancer patients. Make meaningful restitution. "Shower the people you love with love..." and don't take anyone for granted. Ugh-easier said than done. It is hard not to take people for granted. I still do it all the time, even when I try not to. 

Anyway, thanks, Mom, for teaching me a valuable lesson, even after you were gone. I wish I had not had to go through such pain to learn it. 

Pity

Four months yesterday, marked by a visit from two of Maura's best friends. I truly thank them for spending time with me. They are a connection to Maura that I treasure. Kara and I shopped and cooked a vegetarian feast. Before she came I was in a puddle of tears, and I started right up again the second she and Katie left.
Aaagghh! This has been a particularly weepy week. I miss her so much.
I think I am becoming pitiable. I didn't want that. Maybe it's inevitable.

Generosity

I am overwhelmed with gratitude and amazement. Once again I must refer you to Airika and Gerald Pope Photography's blog at geraldpope.blogspot.com . They have posted more pictures of Lydia and Joao's wedding and a slide show of pictures. Not only are the pictures the most beautiful I have ever seen, but the Popes have stated on their blog that all proceeds from the sales of the prints will be donated to M.D. Anderson for sarcoma research! Not only did they provide their extensive services for the just the price of the plane tickets, but now they won't even profit from the sale of their art. What a generous couple.

Ashes and Mount Fuji, Japan

Katie went to visit Leah in Japan. She took a little bit of Maura with her and released her ashes on Mount Fuji--a BFF once again fulfilling Maura's dream of traveling the world. Thank you, girls. Special thanks to Chelsea once again for a great film.

Happy

Wonderful news about two women who have been battling sarcoma: Elsa's tumor is shrinking with a trial drug. And, after three years, Michelle is cancer -free. Time to do the happy dance! 

Wedding Photos

Today, September 10, was the day that Lydia and Joao were originally going to get married. Photographers Airika and Gerald Pope have blogged about and posted more photos of Joao and Lydia's wedding. Click on the title of this post for a direct link to their blog. Or go to geraldpope.blogspot.com One post prior to today's they posted a few pictures from the rehearsal dinner. Amazing, right?
And my brother's already beautiful backyard was turned into the most incredible fairy woodland, thanks to the talented Shawna Yamamoto, a florist/event designer. Wow. Wow! The splashes of yellow, especially the floating candles, were Shawna's way of including Maura in the ceremony.

Pavlov's Dog

I am so blessed to have a job that I love. Every day students come into my office scared, confused, clueless, upset. We talk. We plan. They leave wiser, happier, and smiling.
Positive reinforcement? You bet--for me! The interaction and parting smile are the same for me as the bell and food were to Pavlov's dog, but without the saliva.

Naked

I finally shed the three cancer bracelets that I've been wearing for a very long time.
The co-worker whose 19-year-old son is fighting Ewing's Sarcoma came to visit me. I gave her the yellow LiveStrong bracelet along with the story--my sister's acquaintance in Juneau asked my sister to tell Maura that when Maura ran out of her own strength, she could have some of hers, and then she slid the yellow band off her own arm and put it on my sister's; Maura wore it for months. I also gave her a Live Teal bracelet, and let her know that Maura's friends had had them made in a show of support (along with painting fingernails teal and making paper cranes). I showed her the framed picture of the Dynamo with Maura that hangs in my office (I know, I know, Kathy, I still haven't posted the picture.)
I was also wearing a second Live Teal bracelet. I don't remember how that started, but I couldn't bear to just take it off and set it aside. It seemed an assault on Maura's memory. But on Sunday, we received a surprise visit from a young friend we hadn't seen in about seven years. She came over as soon as she heard the news--the grapevine is long and winding. I met her when she was eighteen and on welfare and a little lost. I watched her grow into a confident, gracious woman. She's a little over thirty now, with two beautiful, smart kids, and the same iron will that makes her a survivor of a different sort than we talk about in the cancer community. She has also experienced recent losses and is learning to be a single mom again. When she asked for a Live Teal bracelet, I knew it was time to take off the one remaining band on my wrist.
Now, only Maura's silver charm bracelet graces my arm, and I feel bare. And my arms look old.

Kemah

We celebrated our anniversary in Kemah this weekend. For those of you who live far away, Kemah is a small port town with a lovely boardwalk that, although physically recovered from Hurricane Ike, languishes in post-Ike depression.  We helped the local economy just a little. 

I had experienced a lot of on-the-surface sorrow during the week, and had looked forward to a time to rest. 

Maybe I was just tired, I told myself. 

But I had forgotten that the only other time I had been to Kemah, we were a family of five, and the details of our long-forgotten outing came flying back to me. 

Oh, no, I thought, this weekend we were supposed to take a break from mourning! How can I have chosen a location that overflowed with memories of Maura. 

More accurately, how could I have chosen otherwise.

Sorrow cannot be put on hold at my convenience. It sounds cliche to say that I must embrace my feelings, but it's true. I feel much better when I allow myself to wallow or cry or remember deeply or laugh or scream or all of the above. At work, I have to reign in the outward expressions of grief, and, let me tell you: It is exhausting!  

So I think that Kemah was a good choice after all. Rather than try to plug the dike, I just let the dam break. 

And it turned out not to be the flood I expected. I allowed myself to remember each location--the stone staircase, where Joel took our picture from below,each of us on an adjacent, descending step; the shark bench and fountain--more pictures; the Aquarium restaurant, where we spent a long time enjoying the 55,000 gallon fish tank, but left without eating because it was too expensive. I relaxed into the sadness. I rested.

That evening, while in our hotel room on the boardwalk, Maura's high school choir teacher called with the news that the choir booster club will establish a scholarship in honor of Maura. She graduated from Spring over five years ago, and yet, she is remembered, and her name will be remembered for years to come. More tears. I can't describe the emotion. I think it was joy mixed with sorrow, but I'm not sure. Maybe part thankfulness. Maybe, awareness that at the very moment I walked through a Maura memory, others remembered Maura as well. 

Sisters

A small group of colleagues meet once a month at the college to support each other through their grief. Today I attended and  met a woman who recently lost her identical twin sister.  I will never understand the bond of twins, but the thought of losing my sister brings to mind a different pain from that of losing a child. Equally horrific, but different (So, my sister had better take care of herself!). My two living daughters have suffered the loss of their baby sister. My first-born lost her baby sister, but she was also a second mom to Maura, so the loss is maternal as well as sisterly. The second daughter lost her baby sister and her status as the middle child. She spent a good 20 years wailing about the trials and tribulations of being a middle child, but now that the status has been taken away from her by force, she is at a loss for how to be. Mostly, they just miss Maura. Like me, like my husband, they struggle to create a life that doesn't include a flesh and blood Maura. And, while virtually everyone is sympathetic when one loses a child, we don't accord the same rights and privileges to those who lose a brother or sister.  After only three months, a lot of people expect them to be "over it."  Mourning is much lonelier for them.