New Year

I suppose the natural thing might be to happily say goodbye to the worst year of my life. 

Except 2009 wasn't the worst year.
Or maybe it was, but it was also the best. 

Extremes.
It was just the year of extremes. Extreme joy and extreme pain. Extreme anxiety and extreme peace.
I have mixed emotions about leaving this year behind.
I don't like leaving Maura behind in 2009. Now I can say, "My daughter died last year." Oh, but that sounds so far away, and I don't like to feel far away from her. On the other hand, I'm also that much closer to seeing her again, but am I supposed to just wish my life away? No.
I liked the closeness of knowing I had hugged her just today or yesterday, last week, last month, six months ago. 

Now, last year.
What will it be like in six? Will her memory be faded like an old snapshot? Will I stop thinking about her every moment of every day? Will her memory be like that of my parents, who I loved dearly, but no longer spend that much time dwelling on their lives or their deaths?

2009 was the year I put everything I believe into practice.
I practiced faith. Everything I believe about God was put to a test and it all proved true. He is all loving, all powerful, all merciful, all just. I can't express how happy and, I admit, relieved I am that I did not doubt that God would and has provided for Maura and for all of us who love her.
I practiced hope. At first, hope that it was all a big mistake. Then, hope in doctors, in medicine, in surgery, in a cure. Hope in a miracle. Ultimately, hope in God, and God alone. Not what He could do, but just hope in Him. Hope = Waiting. ...they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; they shall walk, and not grow faint.(Isaiah 40:31) I learned that verse of scripture from a choir song, so I can't say or write it without singing it in my head. And I got my miracle. Amanda's cure is the miracle. Annive Maura is the miracle. Seeing Maura so graceful and gracious and peaceful in her last days was a miracle. Surviving this is a miracle.
I practiced love. I don't think I have ever loved more purely than I loved Maura this year. Poor husband and other daughters--they were neglected for most of the year. Neglected by me, anyway. I keep thinking of the story of the Good Shepherd, who, leaving the other 99 sheep, went in search of the one lost sheep. I know that the theme of the story doesn't apply here, but what does apply is that the shepherd focused all his attention on the one sheep, as I focused my attention on Maura. 2009 may be the year that Maura died, but it is also the year that Maura lived. For five months she lived. The pain of 2009 is worth it for the five months of Maura.

I practiced not taking anyone or anything for granted. The story of Mary and Martha comes to mind, when Jesus commended Mary for staying and talking to Him while Martha did all the work. "...but only one thing is needed. Mary has chosen what is better, and it will not be taken away from her...."(Luke 10:42) Fortunately, I had an army of friends and relatives who were my Marthas in the last few weeks of Maura's life, although I can't actually remember seeing anything or anyone besides Maura. Of course that was the point: they made it easy for me to do nothing but sit by Maura. I am so thankful for them and that gift of time they gave me.

In 2009 other wonderful things happened. Elsa continues to do well in her latest sarcoma drug trial. And she got to see Leonard Cohen a couple of times. Michelle got rid of another tumor. Kathy's disease is stable and she is well on her way to becoming a nurse. Lindsay continues to go to school and is doing well on her sarcoma meds. Sue keeps on encouraging others despite the near chronic nature of her cancer. And, of course, there is Amanda, whose very life (and the life within her) is a constant reminder of God's love and grace. These six women survive and thrive living lives filled with love and laughter and family and friends. They know, better than I, not to take anything for granted. They inspire me.

This year I got a son-in-law. Yes, my very own son-in-law! How cool is that!

Christmas

Last night I went to two Christmas Eve services at two different churches. I won't say it was easy. It was not. It was sad and quietly joyful and oh so difficult. But even if I am ignoring the usual trappings of Christmas in my household this year--no tree, no dinner, no decorations, etc--I cannot ignore that the One whose birth we celebrate put into motion the events that purchased my life and ensured that I would one day be reunited with the daughter that I miss so much. For that reason, and for so many other blessings poured out to all of us, I wish everyone a merry Christmas.

Perfect

In mystical Judaism there is the tradition of the Lamed Vavnik--36 righteous people whose role in life is to justify the purpose of mankind in the eyes of God. One of Maura's friends wrote her a sweet letter during her final days on earth, thanking her for the privilege of having known one of the Lamed Vavnik.
Today my doctor, who is originally from Beijing, told me that many Chinese believe that people come back again and again to become more perfect during each lifetime. When someone dies at a young age, it is a sign that they have reached a level of perfection worthy of heaven. It does not take a suspension of my Christian beliefs to settle into the warmth of the thought--that Maura was near perfect at the end of her life. Anyone who was with her during those final days would have to agree.

Amanda Part 3

So, I've talked about Amanda, and how just days before Maura's death Maura told her she would be cured of ovarian cancer--and she was, within a week after Maura died; and how Maura told her she would miraculously get pregnant, despite all the years of toxic chemo--and she is(as of August. Baby due April 29).
Last week Scott and Amanda found out they were having a little girl. Her name will be Annive Maura.

Puzzle

I've got a new metaphor for grief: a 5,000 piece puzzle. Each piece is an aspect of my life with Maura and my future without her. Most of the times that I cry, it's just a micro-cry; just a few seconds of grief, and then it's over until the next time. Each time I cry,it's because I am finding a new piece and fitting it into the puzzle. One piece: hearing Christmas music and seeing Christmas decorations at a luncheon at work. Another piece: tracing the curves of her name in the silver fabric paint on her Christmas stocking. There are some things that make me sad over and over again, which I suppose is like those horrible pieces that never seem to fit anywhere, no matter how hard I try. I've gone through so many pieces of her life, of our lives, and maybe when the puzzle is finished, I'll be whole again. Or maybe not. Maybe some of the pieces will stay lost forever, and I'll never be whole, but just like a puzzle, I'll be recognizable, even if I'm missing a few pieces.

Mexico

For Thanksgiving, we chose to avoid the holiday and take a different kind of vacation--a relaxing one. We went to Isla Mujeres, in Mexico. Cheap flight. Cheap food. Wonderfully cheap hotel. Ohmygosh, we had a large balcony overlooking the ocean for $45/night.We almost got sucked into a time share at another hotel, but then we remembered our ocean front room for an unbeatable price and we managed to shake off the spell the timeshare people had cast. At night we watched ships make their way across the Caribbean. We slept with the sliding glass door open, listening to the surf crashing against the rocks. We woke each morning just as the sky started to lighten, but still in time to grab some coffee and watch the sunrise from the hammock on our balcony. Sigh. It was nice. At first, it was hard to relax, especially for Joel.
"Let's do something."
" We are."
"There's nothing to do."
"We're doing it: Swim, lie on the beach,get back in the water, lie on the beach some more, eat, sleep, repeat."
On the third day, I felt my shoulders release. I felt my blood pressure drop. Joel finally got the hang of it, too.
One day we navigated our way through some rocks in the water, and climbed a large boulder close to our hotel. From there we both spread some of Maura's ashes in the ocean.

Awake

Maybe because I've had a few cups of coffee after giving up caffeine for so long. Maybe it's the time of year. I've spent a lot of time not sleeping when I should have been sleeping. Insomnia is nothing new to me, but now it's always related to Maura. I wake up thinking about Maura. I don't fall asleep because I'm thinking about Maura. We successfully avoided Thanksgiving, but Christmas is unavoidable. It's everywhere. And I feel...I feel...apathy...and sadness. I love Christmas and all the trappings of Christmas. And of course, Maura was the one who shared my enthusiasm for singing Christmas carols and listening to Christmas music non-stop from Thanksgiving through December 25. And Maura always decorated the tree with me. And we made cookies, and shopped, and wrapped presents together. And lists, we always made lists. We are/were both list fanatics.
And, although I caught myself singing carols at work this week, I'm not ready to celebrate Christmas the way I normally do.
We went to NYC to spend the weekend with Joao and Lydia before they took off to spend Christmas with his folks this year in Europe. Christmas will be very different and wonderful for Lydia this year, and I'm so glad she will be in a place where everything is new! Although our time was short, we managed to work in making a few favorite Christmas side dishes, wrap and unwrap a few presents, and spend some time together.It was a little rushed, trying to work in family time amid her performances, but it was worth it. She did quite a good job in the play,too, but I'm not biased at all. :)
Here at home, the stockings are hung over the fireplace. That is the extent of my Christmas decorating this year. No tree, tinsel, lights. Nothing. Probably no cookies. The carols are not playing 24/7, although I have turned them on in the car at times. Joel works on Christmas day. Danielle will spend the morning with some friends. I've been invited to two or three homes this year, but I can't. I just can't. I will do one of two things: Either I will stay home and wallow (I need a good wallowing)or I will volunteer at the cancer hospital. I'll call on Monday to see if they'll have me. Friends feel the need to make me feel better because, well, it's Christmas! But this is what I want to do. This is what I need to do. It's all part of this stupid grieving thing.

Thanksgiving

We intended to avoid Thanksgiving this year, although it is one of our favorite holidays, hoping to delay the traditional celebrations until next year when, perhaps, we will be stronger. And, although Joel and I will not cook turkey and all the fixins' nor watch football nor even be in this country on Thanksgiving, we cannot help but think of the meaning of this day. Lydia shared Abraham Lincoln's Thanksgiving proclamation of October 1963. It is worth reading and re-reading. And, mind you, this was written in the middle of the Civil War--not exactly a happy time for folks back then.

The year that is drawing toward its close has been filled with the
blessings of fruitful fields and healthful skies. To these bounties, which are
so constantly enjoyed that we are prone to forget the source from which they
come, others have been added, which are of so extraordinary a nature that they
cannot fail to penetrate and soften the heart which is habitually insensible to
the everwatchful providence of almighty God.In the midst of a civil war of
unequaled magnitude and severity, which has sometimes seemed to foreign states
to invite and provoke their aggressions, peace has been preserved with all
nations, order has been maintained, the laws have been respected and obeyed, and
harmony has prevailed everywhere, except in the theater of military conflict;
while that theater has been greatly contracted by the advancing armies and
navies of the Union.Needful diversions of wealth and of strength from the fields
of peaceful industry to the national defense have not arrested the plow, the
shuttle, or the ship; the ax has enlarged the borders of our settlements, and
the mines, as well of iron and coal as of the precious metals, have yielded even
more abundantly than heretofore. Population has steadily increased,
notwithstanding the waste that has been made in the camp, the siege, and the
battlefield, and the country, rejoicing in the consciousness of augmented
strength and vigor, is permitted to expect continuance of years with large
increase of freedom.No human counsel hath devised, nor hath any mortal hand
worked out these great things. They are the gracious gifts of the most high God,
who while dealing with us in anger for our sins, hath nevertheless remembered
mercy.It has seemed to me fit and proper that they should be solemnly,
reverently, and gratefully acknowledged as with one heart and one voice by the
whole American people. I do, therefore, invite my fellow-citizens in every part
of the United States, and also those who are at sea and those who are sojourning
in foreign lands, to set apart and observe the last Thursday of November next as
a day of thanksgiving and praise to our beneficent Father who dwelleth in the
heavens. And I recommend to them that, while offering up the ascriptions justly
due to him for such singular deliverances and blessings, they do also, with
humble penitence for our national perverseness and disobedience, commend to his
tender care all those who have become widows, orphans, mourners, or sufferers in
the lamentable civil strife in which we are unavoidably engaged, and fervently
implore the interposition of the almighty hand to heal the wounds of the nation,
and to restore it, as soon as may be consistent with the Divine purposes, to the
full enjoyment of peace, harmony, tranquillity, and union.In testimony whereof,
I have hereunto set my hand and caused the seal of the United Stated States to
be affixed.PRESIDENT LINCOLN'S THANKSGIVING DAY PROCLAMATION, OCTOBER 3,
1863.

I had intended to steal Sue's idea and count the blessings I wish for others rather than my own this year. Yet, I find that I truly am thankful for so much that I want to at least start enumerating what I am most thankful for, even though I'll never write a complete list.
I am thankful for having Maura for 22, almost 23 years. I am thankful for Joel's kindheartedness, for Danielle's sensitivity, and for Lydia's fierce loyalty. I am thankful for a son-in-law who seems quite willing to accept the faults of his new family and love us regardless. I am thankful for Maura's many friends who have allowed us to be a part of their lives, and for the legions who were touched by Maura and form her living legacy. I am thankful for a job that fulfills me in so many ways, allowing me to use my strengths to help others. I'm really the one who is helped--the job forces me to take my eyes off myself and my own sorrow and focus on the needs of students, and in that there is healing. I am thankful for my brothers and my sister--those are priceless relationships, even when untended. I am thankful for the many friends who have let me know in so many ways that they care. I am thankful that God has given me hope amidst the sorrow. I am thankful for the atoning work of Jesus Christ. I am thankful that I can feel thankful, even if just some of the time.

Allison

Allison Davis walked onto the platform to receive her diploma for the B.A. in Music at SHSU in May, 2009--the same graduation ceremony in which Maura would have participated had she not already grown too weak to attend. Later, in her blog, Allison wrote about the her new life as a music teacher, as a "grown up", and her outward and inward struggles and triumphs. Here is Allison's voice, from a summer post to her blog:

I'm trying to see how God has a hand in things even when I can't see
how a situation is going to work out or the purpose of it. One thing that
really has been a struggle for me was Maura's death. For anyone reading this
that doesn't know who Maura is, she was a voice major at Sam. We were
friends, but not super close or anything. A year ago she was diagnosed with
cancer and fought a long, hard battle, finally passing away this past May
(www.mauraupdate.blogspot.com).
Maura was one of the bubbliest, most beautiful, most kind people I've ever met.
And she had this awesome faith. Like I said, we weren't all that close, but I was really affected by her whole situation. Why would God allow that to happen to someone so young, with so much potential? How could He take her away from her friends and her family? How was that FAIR? How does that show God's love? I'm
still struggling over that. It's just so hard to understand the whole situation. And I know things like that happen every day. But I don't think I've ever actually known someone my age that died. Even now, I'll think of her and the frustration almost chokes me. I don't know why her situation has become such a fixation for me. And I don't feel like I can really talk about it because there are people I'm around who were very close to her and who are probably way more frustrated than I am. I'm just seeking a purpose in this life. And a reason why things happen.

On November 16, 2009, just three days shy of the six-month milestone of Maura's death, Allison died in a car crash. So young. Others, many who were friends with both Maura and Allison, are having the same thoughts that Allison had, having experienced a double-whammy of loss.

The picture below is currently the facebook profile picture of one of Maura's very best friends, Kara, and was taken at a Halloween party last year. What a difference a year can make. The girl in the middle is Kara. On one side, Maura. On the other, Allison. How eerie to see yourself as the lone survivor of a snapshot taken barely one year ago.
My heart goes out to Allison's family, especially her siblings, her parents, and her fiancee. I have some idea what they are going through.

Six

Six months since Maura died. 

Today. 

I had decided last week that I did not want us to be alone today, so I invited people over to the house via facebook. More showed up than I expected, especially given the other events scheduled at the same time. Others wrote cards or sent notes or emailed. The evening went well. We just talked and ate. The conversation naturally gravitated toward Maura for awhile. We were able to share our Dynamo story. 

     And there was more sadness this week, especially for Maura's friends: another May graduate of the SHSU School of Music died this week in a car crash. She had come to Maura's funeral.She had just started a career as a music teacher. Many of Maura's friends were at her wake tonight.

   And another death earlier today--gifted writer named Kevin Foley died from sarcoma tonight. He has blogged about his life, his cancer, his family, world politics, and just about everything for a couple of years. You can read Card Blue for yourself. I feel as though I have lost a friend, although I never met him.

     I love Maura, and I miss her very much,

Bounce

     I'm having a harder time pulling it together at work. Last Monday, someone tried to tell me of a mistake I had made, and I looked at her blankly because i just wasn't understanding what she was trying to tell me. I felt...vacant. And stupid.
     I'm having a harder time pulling it together other places,too. On Friday, we went to a pub downtown to watch the Dynamo vs. L.A. Galaxy playoff match in Los Angeles. It was crowded. I felt uncomfortable, out of my element. Oh, no. I realized that this was a place Maura had described to me, a place she and Katie had been to. Maura loved having fun. Who doesn't? But Maura was so good at it. She could brighten everyone's day and make us all have fun. Sob, sob. Except now. I really just wanted to go home.
     Things got a bit better after the game started. But it was a weird game. The ref made some bad calls. The lights went out in the stadium in Carson, CA and the game was stopped twice for a total of 30 or 40 minutes.
     At half-time, the Dynamo representatives that were at the pub announced the winners of the silent auction items, proceeds of which were going to the Dynamo Charities. Then he announced a Live Auction for a Dynamo Party Pack, "which includes, among other things, two Dynamo players that come to your event to sign autographs, and a Dynamo Moon Bounce." What? What did he say? A moon bounce? A Dynamo moon bounce? "And we will start the bidding at $100." And I thought of the blog I wrote just a day or two before Maura went into the hospital for the last time, when we were planning her graduation party, and I announced that we would have a moon bounce, at Maura's request. Maura really wanted a party with a moon bounce. She never got it. Instead, the tumors grew, her kidneys failed, and she died. 

     Joel, I said, let's bid on the Dynamo Party Pack. "Who will start the bidding at $100? Yes, the woman with the Dynamo scarf." And I realized I was standing up, with my hand held high, wearing my Dynamo scarf,  "Who will bid $150?" And Joel said, What are we bidding on? It's a Dynamo Party Pack, I replied, and the players come to the party and there will be a Dynamo moon bounce. A what? You know, the jumpy jumpy thing that Maura wanted for her graduation party. "Who will bid $150? 150? Yes, I've got $150. who will give me $200 to have two Dynamo players come to your event...?" One more time, Nikki and Danielle were both prodding me. No, it's too expensive. And Joel, still confused, What are we getting? It's for Maura, I said. A party for Maura. Can we go again? Joel raised his hand. "Yes, $200. Who will give me $275?" Oh my gosh.  A minute later, they came to our side, took our credit card, got our information, and, for $200, we became the proud owners of a Dynamo Party Pack, which includes, among other things, two Dynamo players that come to our event to sign autographs, and a Dynamo moon bounce! 

     I cried. Duh.

     So now we are working on a plan. We've decided that we will use the Dynamo Party Pack in a fundraiser for one or both of Maura's funds---Sarcoma Research at M.D. Anderson and/or the music scholarship endowment fund in her name at SHSU. Kind of exciting!

Ubi Caritas...

This video is from Maura's memorial service. I hadn't watched it in a long while and was again impressed with the sheer number of friends, many of them graduated and living out of state, who came to sing for her. They rehearsed for less than an hour together. The pastor commented that it was the best music ever sung in the church. Such a beautiful piece of music. Maura selected it herself.

When David Heard by Eric Whitacre Part 1

I remember hearing Maura's chorale sing this piece a couple of years ago. At the time, I was very moved, especially with Matt's countertenor solo (as good as the soloist on this video is, Matt's performance was brilliant, haunting, sorrowful, memorable). I wish I had the SHSU version to put up here instead. David's cries, sobs, wails, and moans were so artfully made into music, and I remember thinking--and feeling--how incredibly painful losing a child would be. Many times after Maura became ill, I would hear Matt's solo in my head, "O, Absalom"

Requiem

I'm listening to Rutter's Requiem on the radio right now. So many memories of Maura and this hauntingly beautiful piece of music.

Pink

It's breast cancer awareness month and guess what I did. I became a living, walking poster.

Last week we attended the Dynamo game against L.A. Galaxy and I put sunscreen all over my arms and shoulders and face. Note to self: testing a new sunscreen on the arm for an allergic reaction is not the same as testing it on the face. I broke out in a horrible red rash that I had to explain away to my students he next day. But the rash disappeared within 48 hours.
What did not disappear was the sunburn on my chest and neck where I had neglected to apply any sunscreen at all. Even after one week, I have a painful sunburn in the shape of the pink cancer awareness ribbon around my neck and on my chest. I kid you not. It will peel and fade to a light shade of breast-cancer-awareness-pink that will last for months.
Dear Nancy Brinker, have I gone too far for The Cause?

No, I will not post a picture. That's just gross.

WaterWorks

I cannot understand how I sometimes have absolutely no control over my emotions and other times, I'm the pillar of strength and downright stoic. Today should have been easy. It was a gift I couldn't take advantage of--a lovely inservice day. My chief pleasure on such a day is in the gathering of colleagues from several campuses, giving me a chance to see work friends I don't see on a daily basis. The morning passed without incident. I began to falter in the afternoon after several people came over to talk to me. One of my co-workers dubbed me Miss Popular; I can't help it if people love me :) I hadn't seen many of these colleagues since before Maura became ill. Some didn't know about Maura, and, of course, the subject of my absence came up, and I told them, and well...Others came to offer their condolences. That was a good thing--no awkward silences. I'm glad they did not ignore me. And I'm glad they did not probe or try to say anything else. Lots of I'm sorries and lots of hugs. Just right! But all those expressions of love and concern and friendship drain my energy and bring my sorrow to the surface. When the speaker began, I was already in a fragile state. Jonathan Sprinkles is an excellent motivational speaker for college students, coming from a background similar to many students on our campus, so I had looked forward to hearing him speak. Unfortunately for me, he asked us to write down recent challenges in our lives (I didn't) and how we had solved them. (Uh-oh. Here it comes.) My chin quivered; my eyes welled up; and I'm sitting at a table with all my immediate co-workers. Darn. Double darn. Then Jonathan proceeded to tell us that most of our greatest challenges are 1) temporary, and 2) never turn out as bad as we think. I never heard what number 3 and 4 were. Oh, thank you, God, that I was near a door! A friend followed me to make sure I was okay. Then she retrieved my belongings from the conference room, and I headed for home. Only I didn't go home. Instead I came back to work for awhile, needing to get my mind busy. Well, that didn't work either. I got some work done, but here I sit, unable to concentrate, using my work computer for personal blogging. I think they can fire me for this. If you are reading this, and you have the ability to fire me or to get me fired, please don't. It's 6:50 on a Friday evening, and I'm a wreck.

Addendum, 7:30 Saturday morning: I'm better now. Still, I go back to my original question: Why do I have no control over my emotions? So many times I can talk about Maura, or I can listen to people making insensitive remarks, or I can read or listen to self-help gurus. No tears. I'm fine. I've got this grief thing under control. And at other times...
Emotional triggers? Nothing and everything.

Fact or Fiction

Theatre is so much better than a self-help book for processing grief. For me.
This weekend I saw the play Rent for the second time in several years. The first time, I thought it was a nice show. This time it was a memorable and moving experience. Every theme of the play flew past me unnoticed save one: the responsibility of living well. It is not a show about gay people or AIDS, even though it is. It is about life, about choosing to spend our time on what matters.
I did not expect the floodgates to open during this show, but , hello, everything reminded me of Maura. One of the main characters, aptly named Angel, was Maura: talented, kind, loving, the peacemaker. After one year, Angel dies, leaving his friends to figure out what Angel's life and death taught them of the importance of life, love, and relationships (and, I add, God).
Maura's last 525,600 minutes were, as the song suggests, measured in love. I was taken by surprise to see Maura's high school friend, Jennifer Ross, soulfully sing the solo in Seasons of Love. I felt like I was in church, and someone please pass me the Kleenex. Really. I think the people behind me should have asked for their money back because I was probably very distracting. As Jennifer finished, I rose to my feet, aas did so many others, and the applause reverberated throughout the theatre.
After the show I had to compliment her--and she confided that the director had scolded her for singing the song without passion. So she searched her heart and started over, singing to Maura and for Maura and about Maura. And she got it. And I got it. And the whole audience got it. And it was for Maura. I'm so glad I got to be a part of that.
Jennifer said that Maura taught her how to sing Gospel music. Isn't that funny? The little blond chick teaching the African-American diva how to sing? I think Jennifer exaggerated, but she insisted that she had a very small voice before Maura drew her voice out of its shell.

Theatre is so much better than a self-help book for processing grief. So are novels.
I don't know why. I'm not opposed to inspirational books that speak to grief and healing. I'm reading four of them right now, all good, all helpful; all gifts from friends who were helped themselves by one or another of these books. But I find that it is within fiction that I find a character or two that I can identify with, and I can cry or see things differently or find comfort. Biographies that are written by excellent storytellers (certain books of the Bible being a terrific example of the latter) satisfy that same need.
Here is an excerpt from The Story of Edgar Sawtelle by David Wroblewski. I have read this paragraph--the whole chapter--- at least a dozen times over the course of reading the book this month. Simple, but accurate:

There followed, for each of them, good days and bad, and often Edgar's best moments coincided with his mother's worst. She could be cheerful and determinedly energetic for days on end and then one morning he would walk downstairs and find her hunched at the kitchen table, haggard and red-eyed. Once lapsed, nothing could deliver her. It worked the same with him. Just when normal life felt almost possible--when the world held some kind of order, meaning, and even loveliness(the prismatic spray of light through an icicle; the stillness of a sunrise), some small thing would go awry and the veil of optimism was torn away, the barren world revealed. They learned, somehow, to wait those times out. There was no cure, no answer, no reparation.

I love that line: They learned, somehow, to wait those times out. Yes, that is what it is like.
I think of the Biblical stories of Hannah, Ruth, Mary and Martha (the sisters of Lazarus), Mary (mother of Jesus)--women who prayed and believed and mourned and did not, even under extreme pressure, lose faith.

Yes, right now, stories of all genres help me grieve.

Coincidence

I have received several emails and texts from people I don't regularly hear from, asking how I am, telling me they're thinking of me...much more than normal. Lots of people asking, "How aaarrrre you?" with those eyebrows arched in knowing concern. This can mean only one thing: I haven't blogged in over a week, and people get worried I'm going to fall into a funk.  So, I logged on tonight to let everyone know I'm okay, we're okay, everything is okay; I just haven't had anything to say. And, lo and behold, Matt also just blogged from Korea b/c people let him know they were worried about him. Hmm...I think our mutual friends need to get out more. 

It is good to have friends and family who care.

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.

Ads

A few months ago I let Google start putting ads on my blog. I thought that it would be a nice, passive way of gathering funds to donate to sarcoma research. I haven't done anything other than sign up, and, voila', I now have about $25 in my account. Only problem is, I can't access it until I have at least $100. and, there is something about a pin number that I think they sent to the house...aagghhh...it's too confusing. One day I will figure it all out, and when you hear about some million dollar donation to M.D. Anderson for sarcoma research, you'll know it was me.

Bubble Exit

Here is another picture of Lydia and Joao's wedding. I am so glad that Airika and Gerald Pope were the photographers--they are such artists! I stole this picture (with their permission, so I guess it's not stealing) from their blog, and, if this is just a preview, how wonderful the collection will be! I can hardly wait!

Solidarity

I have blogger friends--would they be bloggends? Or blends? Or is that too complex a fabrication? They write their stories and matter to me. When they hurt, I want to make them feel better. I rejoice in their successes, whether it's a clear scan or release from the hospital after a procedure. Kathy is superwoman, probably the strongest person I know. Elsa has a heart of gold and is pure goodness. SG is unafraid of honesty and, oh boy, can he write. And the young ones, Michelle and Lindsay--they remind me of Maura because they are young and beautiful and strong, and I can see when they tire of being strong. They are survivors. Sue and G.H--I don't know them well, yet. All of these precious people chronicle their sarcoma journey on the web, and I feel as if I know them. If any of them visit Texas, I'll expect them to call, and I'll offer them a place to stay. I miss them when I don't see their blog entries or their emails or blog comments. What can I offer them? Not advice. I say it's not so great to talk to the woman whose child died from the disease. I can't give them ham or cheesecake or any practical help. I can offer prayers and cheers and hectoring of vicious tumors (They also increase my vocabulary). Their lives give me hope--I receive so much more than I give.

Live Teal on TV

Right this very second, as the Seattle Sounders play the Houston Dynamo, Kai Kamara, Maura's favorite player, is wearing the Live Teal bracelet (teal rubber bracelet like LiveStrong) that her friends had made to show support for Maura. 

When six of the Dynamo players came to visit her just 5 days before she died, Maura confessed that Kai was her favorite , and he had the shy grace to be flustered. 

We slid the bracelets off our arms to give to each player, and Stuart Holden promised they would wear them the following Saturday. We couldn't see them on that Saturday in that out-of-state game, but we can plainly see the bracelet today on Kai's arm. And we can also see that Stuart Holden has his wrist taped, with a telltale bulge hinting that he may have the Live Teal bracelet underneath as well. Back in May, he had said that he would have to tape it.  

Stuart's father died from cancer last year, and he has a charity called Holden's Heroes , which provides Dynamo tickets to kids with cancer. 

Adaptation

Warning: If you see me in my car in a parking lot, don't look; just keep walking. My car has become my staging ground. Since I started back to work three weeks ago, I have discovered that the car is an excellent place to cry. I didn't plan it that way. It just turned out to be a place of solitude and reflection. So now, after weeks of repairing tear-stained streaks, I delay putting on makeup until I reach the parking lot. There, I can both pull and put myself together before joining my colleagues.

A moment.

When I adjusted, just a smidgeon, the angle on the screen of Maura's laptop, the picture of her on the blog took on a three-dimensional quality. Her smile seemed to grow. My throat constricted, and, for a moment, I couldn't breathe. So real, so touchable. It seemed.

Sometimes I Pay Attention in Church

So, this Sunday the pastor of a church I visited talked about adopting an attitude of thankfulness. When he included Greek verb tenses his explanations, I nearly swooned because I love grammar. No, really, I do. It was a great message, and I took lots of notes. Don't know the guy's name.

I am thankful for time. I've been thinking a lot lately about how patient God is--and how gracious to bestow on us the gift of time.  Through/with/because of time we can heal. We forgive, forget, or sometimes just soften the image. We gain perspective and become wise. Maybe. We become better people simply because of the passage of time. 

I know that this is my time to grieve, and I know that God will not rush me through this.

For about ten seconds, though, I wrestled with the thought that it might be wrong of me not to be thankful for Maura's death or her illness. I mean, I'm really not one bit thankful that she had cancer and died. Duh. No shocker there. Does God expect me to be? No. I think He expects me to do just what I'm doing: move through my grief through time. Left foot, right foot. 

However, I also think that I ought to purposely thank God for other things in my life because my attitude may be on some sort of movable linear scale. On one end is thankfulness; on the opposite end is bitterness.  And, I don't think I can remain stagnant; I am constantly moving toward one side or the other.  Mind you, lots of the time, my grief consumes me to the point of not feeling thankful for anything. Like I said, God is patient, and He will wait for the other times, like right now, when I can begin to list what I'm thankful for. The list quickly becomes so long and detailed, it borders on the ridiculous (my family; colored plastic-coated paper clips; a job that I love; that Korean lemon tea that I eat like jam...). 

Not so ridiculous, though. 

Not so ridiculous to have an infinite number of blessings from an infinite God.

I am thankful for time. 

I thank Him for allowing me to mourn and for not expecting too much. 

I am thankful for all the healing that is taking place within me, even when I don't know it, just because of time. 

Mostly, it comes down to this: I am thankful that God is God. 

Undercurrent

I'm not sure how to express this, but I now know I can feel happy and sad at the same time.
When Lydia got married a couple of weeks ago, I rejoiced in her happiness, but I had to make myself scarce several times that day to deal with uncontrollable sadness as I thought about Maura--how she would have loved the occasion, the dancing, the food, the time with sisters and cousins; how I will never see her walk down the aisle...
And I returned to work last week--same location, different job--and am very happy with the change. My new position is a much better fit, and is something that I love. But several times a day just for a few seconds at a time, I shed a few tears, and then get on with it.
But it's more than just the tears. It's the sense that even when I am smiling, I am sad. Sadness is the constant undercurrent. I'm not talking about the fake smile/fake happy that I still do a lot. I'm talking about legitimate, unforced smiles and genuine joy. And always underneath, tugging at me like the undertow at the beach, is the grief. Always.

Lydia Getting Married

More You CAN Say

I like the comment and suggestions Joni gave in response to my last post:

"When people ask me what they can say to a person with cancer, I tell them, 'Anything you say is wrong, and if you say nothing, you are a terrible person.' "

Sums it up pretty well, doesn't it? And it holds true for many of life's crises.

I also like her additions to my CAN SAY list:

• I just want you to know I care. (Usually okay.)

• I'm listening. (I'm not sure I agree with this one. It leaves me feeling like I have to say something back for the person to listen to. See how tricky this is? It's different for everyone)

While you most likely have not had a child die, there are many of you who have been put through the wringer of disease, heartache, or death of a loved one. And you have your own experiences of the good, the bad, and the ugly of what was said to you.
I invite you to share CAN SAYs and DON'T SAYs in the comment section of this post.

Top 5 Things You CAN Say

To those whom I have offended through my post of Top 5 Things NOT to Say to someone whose child has died of cancer, I apologize.
To those who no longer dare talk to me for fear of saying the wrong thing, I apologize.
To those of you who will tell me I have no need to apologize, don't worry--it's a shallow apology.

Several people have asked me, "What CAN I say?" Good question. I have found that I can't predict my reactions to anything. It is the nature of grief, I suppose, that I am in a fragile state, with emotions running just below the surface. They shoot up like the flames in the Fire Swamp, seemingly without warning (another Princess Bride reference). But still, people have made comments that made me feel better, if only for a moment. This list is not comprehensive; it's just what I can remember:

• Maura is singing in the Heavenly Choir. (But wait, but wait...isn't that also in the Top 5 List of No-no's? Yes, it is. Here is a perfect example of how unpredictable grief is. Sometimes, especially on Sunday, I think of Maura singing praises to God, and it comforts me to think that we are singing together. So, if said at the exact right time when I am in the right mood, I can appreciate the beautiful statement. But I've heard it soooo much from soooo many people, that it more often than not just reminds me that she is not singing where I can hear her. Too bad you can't know when you can say it and when you can't. Sucks for you.)
• You will see her again. (Same idea. It's another dicey one you're better off not saying because it's been said so many times and usually only serves to remind me that I can't hug her now. So, it doesn't belong on this list, does it? But, I can't deny that I think about it every day. )
  
• I won't ask how you are. (It's such a relief not to have to answer the question. I feel like such a liar when I say "fine" and such a whiner when I say anything else. I know that it is just a simple greeting or expression of sympathy, not even requiring a response other than "thank you," but it still stresses me. )
• I remember when Maura...[fill in the blank] (I love hearing stories about Maura. I love hearing how she affected others. I love hearing about her zany adventures, her laughter and her smile, her good deeds, her passions, her love of life and God and music and languages and travel and penguins and parties and elephants and clothes and shoes and sunflowers and yellow and pink. This is a pretty safe bet to use most any time, even if I cry.)
• I'm sorry. (When in doubt...)
  

I guess this is only a Top 3 List. Oops.

Language

I'm so disappointed. I had always believed that the Inuit had a zillion words for "snow," a reflection of their more constant connection with all things snowy. When I googled it, I found out that, really, they have no more words than we do to express snowiness, but, linguistically, there are good reasons for the myth, reasons, I don't want to explain here. If you like that sort of thing, you can check out the following article that  I found interesting.It ends with a few references for further study. Okay, I confess, this is the kind of thing that I really enjoy reading. I'm such a nerd.  http://www.derose.net/steve/guides/snowwords/

So, anyway, the whole search came about because of something that several people have written to me. That is, while we have words for those who have lost a spouse and those who have lost parents, we have no word to label the person who has lost a child. Language develops because of human need for a word to express a concept. Why is there no word for parent-whose-child-has-died? Because humans don't need it? Or because it is so unusual? Or because we don't want it?

I wonder if there is a language that has a word for parent-whose-child-has died? If such a language exists, what does that say about that culture and society? How sad is their history?

Top 5 Things NOT to Say

Here is my list of the top five things not to say to someone whose child has died of cancer. Yes, these have all been spoken in an effort to comfort me.

#5. A lot of good will come from this. (Yeah, hmmm...for me it will always be a bad trade. Now is not the time to quote or misquote Romans 8:28)

#4. God gave her cancer because [fill in the blank].

#3 God took her early before she could become corrupted. (Oh, really? Um, I think Charles Manson would have been a better choice.)

#2. God needed her to sing in the heavenly choir. (So, I hear there's an opening for another soprano. Anyone? Anyone?)

and the #1 thing not to say to someone whose child has died of cancer (Drum roll, please):

#1. It's not so bad because you have two other daughters. (Oh. My. Gosh. )

I know it's awkward. I never know what to say either, and I'm no stranger to putting my foot in my mouth. I also know that everyone has the best of intentions; no one sets out to say something stupid. Nevertheless, if there is a lesson here, it is this: Resist the urge to say anything more than, "I'm sorry."

Sigh

Sorry about that last post. I was just venting.

"New Normal"

Who invented that term? There is nothing normal about this.

Mr. Hemingway

Today we went to Mr. Hemingway's 90th birthday party. He once said his goal was to be teaching when he turned 90. Well, his 90th birthday was actually on Thursday, and he spent it teaching a math class at the college. He has been a teacher for 66 years. I used to teach GED classes with him for most of the 1990's. He has been teacher, mentor, and friend. But forevermore, he will be the man that was in the right place at the right time, just when I needed him most.
After I went to another campus, he managed to show up every now and then at my office to just keep in touch. The last time he made a surprise visit was on Friday, April 11, 2008. While we ate lunch in the back office, I got a phone call from Maura, only it wasn't Maura. It was the P.A. from the university health center telling me that Maura had a very large tumor in her abdomen. That was the moment the earth stopped spinning. Mr. H. saw me struggle not to fall apart as the P.A gave me as many details as he could. By the time I spoke to Maura, I couldn't hang on any longer. I asked her if she wanted to pray. She said yes. And then I couldn't say a word. Nothing came out. I thrust the phone in Mr. H's face and he took over. He started out by saying, "Dear Lord," and Maura, thinking he had said, "Dear Maura," responded with "Yes, sir?" Mr. H. probably figured it was her vocal Baptist upbringing coming out because he didn't skip a beat. He prayed, and Sarah saw what was going on and joined us. I wish I could say that then I was calm and all was well. Not so. But I can't imagine a more perfect person to be with me when I received the most terrifying news of my life. Mr. Hemingway prayed and I could sense his strength in the prayer, and I didn't feel alone. After the phone call, I tried to formulate a plan, and I didn't feel alone. There's something very comforting about knowing that there is a spiritual giant praying for you.
Happy 90th, Mr. H! I love you!

Sometimes

I think bittersweet describes so much in my life right now.
I have enjoyed having Lydia here, discussing wedding plans, being a family.
I've enjoyed the thought of returning to the college in a new role, once again working with students instead of in administration. Oh, what a relief that is!
The 4th of July saw the resurgence of our family tradition: we hung out at the park, everyone dispersing to do as they pleased, while Mom cooled herself on the blanket with iced tea and a good read. At dusk, the Houston Symphony Orchestra played a patriotic concert. As always, the concert concluded with the 1812 Overture, complete with cannons and revolutionary soldiers. As always, the orchestra played The Stars and Stripes Forever as its "spontaneous" encore. And then, a fireworks display.
Oh, and Bianca was bad. The other dog owners at the park pretended to be tolerant and lovey-dovey, but you know they were thinking,"Get your dog in line, lady!" But I had my revenge. When she licked them, I didn't tell them that she eats poop.
A difficult yet precious moment? Maura's best friend arrived wearing a favorite dress of Maura's.
Remember that song from The King and I? ...Make believe you're brave/And the trick will take you far/You may be as brave/As you make believe you are (and then there is a bunch of happy tune-whistling). That's me. I can smile and laugh without faking it part of the time.
But the hole in my heart is cavernous, and sometimes I feel like all my blood flows through that hole, pooling at the soles of my feet, leaving me weak and lead-footed.

Sarah Palin

I'm a hot mess of tears and it's all Sarah Palin's fault.
My sister called from Alaska with the news that Sarah had resigned as Alaska's governor. Ohmygosh,how intriguing! No explanation from the governor, leaving us with endless possibilities: Has she decided she needs to spend more time with her kids? Is there a huge scandal about to break? Has her poor judgment caught up with her? All of the above? And what does the self-proclaimed "First Dude" Todd have to do with it?
But the one person who would enjoy the sheer FUN of discussing the latest Sarah Palin gossip with me is Maura. Maura.
Maura, who shared months of pre-election chatter with me; whose eyes lit up when she spoke of Barack Obama, whom she fiercely supported; who discovered her political voice quite recently in 2008. How thrilling for me to see her appreciation for our American political process develop and thrive before my eyes!
I shared the Palin news with Lydia. I called Adam, too. They showed interest, but it wasn't the same. With Maura it was more like sharing secrets at a slumber party.
I long to talk to Maura, and I am doubled over in pain from a stomach punch of grief.

Ashes and Paris

Kara and Chelsea released some of Maura's ashes at the top of the Eiffel Tower on her birthday. If you have trouble viewing the video go to the following YouTube URL
http://www.youtube.com/watch?v=a-DBrB7CsiQ

I Have a Dog

(( Sigh. )) I have a dog. I did not plan to have a dog. I did not want a dog, but there it is: I have a dog.
I have fallen off the no-pet wagon. My name is Erin and I am a bad owner.
The two dogs I had as a kid thrived only because of my dog-loving mom. Later, as a mom myself, I tried my hand at dog ownership several times,stupidly thinking that the responsibility would be good for my daughters, but, oh no, I am not my mom. When the girls neglected to feed or bathe or brush or clean up messes, I hollered, "It's not my dog!" The dogs never stayed for long.
The best thing that a non-dog person can do for the canine world is admit failure and forever resist the temptation of puppies being given away on the side of the road.
For years, I stayed clean. No dogs.
Then we rescued Bianca for Maura. From November to May, they were best friends. Maura took good care of Bianca (way better dog owner at 22 than at 8), even when suffering the effects of chemo, and Bianca responded by loving Maura with pure doggy love.
Maura willed Bianca to me. Uh-oh.
When Maura died, Bianca mourned. She didn't eat much. She moped.
After a few weeks she chose me. At first it was subtle. I'd notice that she would be lying at my feet, or she might hover at the door of my room. Now she follows me from room to room. As soon as she hears me, she runs to greet me, then flops over on her back, waiting for a belly rub. It doesn't matter if she saw me five minutes ago, it's the same routine. But she's bad. No amount of The Dog Whisperer has changed her. She frolics in the weeds and returns covered in green stickers that I have to pull out one by one. She chases cats and squirrels and big dogs and little dogs. She rolls around in poop-scented mud. She eats poop and then licks me. She is gross.
But I like her better than I've liked any dog before. I care for her and care about her. She reminds me of Maura. Darn. Now what am I going to do?

Birthdays

Danielle's birthday and Maura's birthday. Back to back. They would have had the same birthday had I gone with my gut feeling way back when.
Twenty-three years ago, on Danielle's birthday, I woke up with a jolt at 3 a.m. and thought, "Something is wrong." My ninth month of pregnancy with my third child, and this premonition was the first and only one of its kind for me. I had never had any of those airy-fairy feelings or sense of communication with my unborn children that you hear about in baby magazines. I talked to my babies, but they never talked back. So, I disregarded the jolt and went back to sleep.
Later that morning, I couldn't shake the feeling of wrongness, but we were celebrating Danielle's birthday, and it was Sunday, and I wasn't experiencing any weird symptoms, and I had an appointment with the doctor the next morning anyway.
Fast forward twenty-four hours. Dr. Leff said everything looked, felt, and sounded great...but since I had this feeeeeling, she would send me over to the hospital for a fetal monitor test.
Guess who failed the test. Big time. Her heart rate looked more like a sonar map of ocean valleys instead of an ekg strip. My body was no longer a safe place for her, so Maura was born. Turned out she had the cord wrapped around her neck three times. Mother Nature would push her head down, choking off the blood supply, and she would bounce back up. Maura had a strong will to live from the very beginning.

This year, Danielle's birthday celebration was muted, but went off without a hitch. Family, friends, a funny movie, and dinner out. It was a good day. She is a sweet, beautiful, talented daughter, and she deserves happiness. Next year, her birthday will be easier.
Maura's birthday. Rocky.
It wasn't a wallowing day. It was a furious day. Fury and tears. I cleaned like a madwoman, attacking the floor with my broom and mop, scrubbing the sink as if it were stained with blood. Joel spoke. I lashed out. He retreated. Smart man.
I finally, finally, sorted through some miscellaneous bags that we brought home from the hospital. Some clothes, some toiletries, an unread book, deck of cards, Maura's Dynamo shirt, hand-signed by six players who visited her a couple days before she came home to hospice care (eat your heart out, Jerusha). I wonder if they know that she has died.
In the evening, I managed to pull it together for company. Friends came over for game night to celebrate Maura's birthday. Food and fun and friends and a little competition. All good. I like how every game night we bring out ten games and always end up playing Catch Phrase.
And the day ended with conversation and the four of us together, not quite willing to go to bed, even though we were falling asleep on the couch. All good.

Father's Day

We started the day with our traditional breakfast in bed for the honoree. Lydia and I were feeling particularly Brazilian (one of us by birth and the other by marriage) last night, so we bought lots of fruit, including papaya, mango, carambola, and blueberries. Okay, so blueberries aren't Brazilian, but so what? We made an avocado milkshake, verrrrry strong coffee, and served him hot bread with butter and queso fresco, which is the closest we could find to queijo minas. We also served him orange juice with champagne, which also may not be Brazilian, but, again, so what?
Lydia took Joel to an early movie, a guy movie. And we relaxed for an afternoon of soccer channel hopping between the Italy/Brazil game and the USA/Egypt game. Miraculously, USA made it to the next round, with a lot of help from Brazil. USA and Brazil both won their games 3-0. I hope it wasn't Father's Day in Egypt or Italy. After picking up Danielle from the airport, we saw another movie, but poor Joel was so tired, he fell asleep in the theatre.
We didn't talk about Maura today, but we thought about her a lot. I know we all did.
Today is the first of three special days in a row that will be hard for the whole family. Sunday, Father's Day; Monday, Danielle's birthday; and Tuesday, Maura's birthday. We miss her, but we managed to celebrate today, and we will celebrate tomorrow and Tuesday as well. It will be difficult, but, oh, well.
Joel is the best father in the world. He has loved his girls for thirty years. This past year he selflessly let me stay home with Maura while he continued to work, even though he would rather have been at Maura's side, too. I got the better end of that deal. He read to Maura almost every night. He cried and prayed for his daughter daily. And when she was close to dying, he held her in his arms, unable to hold back the tears. He is strong for the rest of us, and reminds us that she is in no more pain, that we will one day be reunited, and that she is happier now than we can ever imagine.

That Mom

Today marks one month that Maura died.

Kathy sent me a beautiful post, written about a year ago by another grieving mother.
http://abritandabit.typepad.com/spotted_dick_and_other_mu/2008/08/i-am-that-mom.html

In some ways it explains what I feel, but better. I identify with being "that Mom." I am the mom that no one wants to be, that gives every other mom pause, that reminds them of what they know but occasionally forget to cherish.
In other important ways, her story is different.
I do not feel the bitterness that she feels. I am not bitter at all--something I attribute to a faith in God deeper than I knew I possessed.
I also think that having a year to absorb the reality of Maura's situation made death less shocking than it was for the mom in this post and others whose children are taken suddenly and/or violently.
And I had 22, almost 23 years. She had but two.
Michael Gartner, former head of NBC news, retells the story of a phone call from Tim Russert, shortly after Gartner's 17-year-old son died.

Christopher was one of my sons, and he idolized Tim. Christopher died in 1994, at age 17, from an initial attack of juvenile diabetes. I had left NBC by then, but within hours of Christopher's death the phone rang at home in Des Moines. It was Russert.

I was in tears, and he seemed to be, too. He expressed his deep sorrow, and then he said:"Look, if God had come to you 17 years ago and said, 'I'll make you a bargain. I'll give you a beautiful, wonderful, happy and healthy kid for 17 years, and then I'll take him away, you would have made that deal in a second."

He was right, of course, that was the deal. I just didn't know it.

(http://www.usatoday.com/life/people/2008-06-14-russert-appreciation_N.htm)

I've loved that story of Tim Russert for years, never thinking I would apply it to my own experience. But that's how I feel. I am thankful for the 22 years, wishing I had more. I just didn't know that was the deal.

Dishes

Come get your dishes. You brought meals after Maura died, but I don't know who you are, and I don't know how to get your dishes back to you. A piece of clear tape dangles from the bottom of one green glass bowl, so I figure that at least one of you intended to use your dish again. Unfortunately, the name on the tape has washed out.
Thank you all for the food. You were so very kind to think of our practical needs at a time when we couldn't, and I am very grateful.
Many people came and went in our home before and after Maura's death, and we all needed to eat.
I can't remember. Really, I can't recall one specific meal for the whole month of May, except for the hams. It's all pretty much a blur, so please forgive me. I try to recall specific events from the last couple of weeks in the hospital, from the few days of hospice care, from the memorial service, and from the days before and after the service, and I find myself looking at a tapestry with glaring moth-eaten holes and incomplete stories. It doesn't upset me. It's just weird.
We are all grieving and healing in our own way.
One of Maura's friends is having nightmares. I wish I knew how to help her. The internet has given me an armful of suggestions, all of which I hope to pass on to her soon.
Even though the following link refers specifically to holidays, I found the suggestions helpful for everyday healing.
http://www.ojp.usdoj.gov/ovc/publications/holidaytips/suggestions.html

Sunflowers

Today I received a beautiful card from a friend with a photo of sunflowers. The card reminded me of Maura. I had a sunflower charm and an M charm placed on the same link of Maura's charm bracelet, which I inherited, and then did the same for her sisters' bracelets. I told myself that I would now be able to take off the rubber bracelets that I've been wearing--the yellow LIVESTRONG bracelet given to Maura by a cancer survivor, and the teal-colored LIVE TEAL bracelet that her friends had made for her. But Kitty said I should find someone to pass them on to, someone who might need a little more strength to get through another cancer day.
I found out today that the young (20's) son of a colleague has just been diagnosed with Ewing's sarcoma. I think I'll pass my bracelets on to him and to his mom. Even though teal is supposed to be the color for ovarian cancer and yellow is supposed to be for sarcoma, I don't think it matters. Nobody's going to think he has ovarian cancer.

Healthy

Nicole is bringing salmon and vegetables. Jessica brings me fresh veggie trays. Judy calls me for bike rides. Joni signed me up for pilates. This is comfort in 2009. This is friendship in 2009. Everyone making sure that I treat myself kindly so that I can recover in both body and spirit. Hello. Doesn't anyone make cheesecakes anymore?
Or ham?
Actually, I did get three or four real hams right after Maura died. Joni wrote in her blog that it is the ham that gets you in the door. The ham is how one can wordlessly express love to those who are grieving because words are oh so inadequate. The ham gently pushes me, the griever, to have human contact and relate in some way to the outside world.
Pilates, bike rides, salmon, and veggies are the new hams.
They are the hams for those of us with high cholesterol, high blood sugar and high blood pressure. Actually, I like to refer to them as Hi, Cholesterol; Hi, Blood Sugar; and Hi, Blood Pressure to indicate the friendly way in which I have welcomed them into my life in the last year or two.

Hey, I cracked a joke. I think that's progress.

Milestones

I can't help but mark time in relationship to Maura. One week since she died, two weeks, and tomorrow it will be three.
Or the firsts: First week without having to go even once to MD Anderson. First trip to the market without Maura, first meal I fix without Maura, first trip to the mall, first bike ride in the park.
My visiting sister and brother made sure that I had one contact with the outside world per day and that I ate healthy food.
A first: Today marked the first day without anyone at home besides Danielle (Joel went to work). We still had a couple of visitors, but no one sleeping here to make sure that we get up, get dressed, and eat. So today, maybe as a sort of rebellion, I stayed in bed until very late, didn't change clothes, and ate nothing but fruit roll-ups. I watched videos of Maura. I cried. And I wallowed. There has to be wallowing. I have covered myself in the thick mire of sorrow and just spent time in that mud hole letting myself feel the weight of my loss. And it hurts so good.
Today marked another first: the first day we did not receive a condolence card in the mail. For three weeks I've secretly looked forward to the mail, immediately throwing down bills and catalogs, and grasping at the telltale envelopes containing so many kind words. Even the mailman expressed his condolences. He said he could tell by all the cards coming in that we had had a death in the family. The stack of opened cards and letters on the desk has grown tall. I can't remember who sent them or what they said, but I remember that the handwritten signatures or handwritten words provided a measure of comfort. Note to self: Always, always, always send a note of sympathy. It may not be remembered later on, but for that one moment, I can provide comfort to someone who is grieving.
So, now that the cards have stopped, what do I do? Is that my signal to pick myself up by my bootstraps and get on with life? If it is, I'm not listening--not yet. I don't even know what bootstraps are.
I need a few more wallowings. Maybe at a subsequent wallowing I can re-read the sympathy cards.

Maura's Story on Channel 13-- click here

Click on the title of this blog entry to get to the Channel 13 story and video.
I don't know why I am having trouble embedding this video, too. But the ABC Channel 13 story about Maura was very well done. Reporter Christi Myers put together video clips of Maura performing the role of Mabel in Pirates of Penzance just one week before discovering that she had a tumor, interview clips with her doctor, her sisters, and mom and dad, a piece of the graduation, and footage of Maura while she was in the hospital, just days before her death. Best of all, sarcoma was mentioned by name and Dr. B. was shown talking about the difficulty of getting funds for research to find a cure. He spoke very kindly of Maura. I was glad they put that part in there as well.

Maura's Memorial Service

Here are links to Maura's memorial service. It's long--so long that the tape ran out and Carlos had to put another one in. My thanks to Carlos for putting this on his server so Maura's friends and relatives that could not be here have an opportunity to see it, and for having the foresight to record the service. Definitely, it is not the same as having been there--that day, that hour has no equal.

http://www.espressoweb.com/Maura_01.asx

http://www.espressoweb.com/Maura_02.asx

the first link is 1 hr, the second approx. 20 min.

Amanda

At the beginning of Maura's cancer journey, a young friend came back into our lives. She had mostly known my older girls through church and school, but life had taken them all in different directions and they lost touch. Amanda was only a few years older than Maura, married, very wise, and she had been dealing with cancer for a couple of years, so she spoke with authority. At one point she had been on death's door and subsequently--amazingly--had gone into remission. When she became Maura's friend and mentor, she was in remission for the fourth time.
Last year, she would bring black bean burritos each week and sit in the living room with us. Maura wouldn't say a word. Amanda never seemed uncomfortable with silence. Slowly, Maura began to open up to her; Amanda responded with advice or related a story about her own experience. She began to teach Maura some life skills that were especially valuable to someone in the cancer maze. From Amanda, Maura learned to speak her mind at the doctor's office, to stick up for herself when a health care worker neglected to treat her the way she wanted to be treated, not to be embarrassed about getting her way at the hospital , even if an employee (or friend or family member) was inconvenienced. She learned not to let cancer define her life. She learned to trust God, regardless of the outcome.
She gave Maura a box of Bible verses that had once helped her and a bag of all her caps and scarves from when, she. too, had no hair.
One day last year Amanda told Maura that she would take her cancer for her, if that were possible, because Amanda has a gold heart and she loved Maura that much.
A couple of months ago, Amanda's cancer returned, and she began chemo treatments for the fifth time. Even so, she never left Maura during the last couple of weeks, camping out on our floor while Maura was in hospice care. Maura had asked her to stay. I don't think we could have dragged Amanda away had we wanted to. But we didn't want to. Amanda was a constant presence at the house and at the hospital, showing up at Maura's bedside at 4:00 in the morning when I needed a nap, quietly finding her place in our home. A few days before Maura died, Amanda told Maura again that she would take her cancer if she could. This time Maura responded. "I wouldn't let you. You are going to get well and live and get pregnant and have a baby. And you are going to bring that baby over to our house so my mom can rock her." And I think they both cried. I did, at least, when I heard the story.
A couple of days after Maura's memorial service, Amanda got her latest CT-scan results after fewer than half the recommended chemo cycles. Clear. Cancer is gone.

Her Cancer Was Not YOUR Cancer

To Elsa, Healthy Lindsey, Kathy, Ray, Amanda, and to everyone else who has cancer or has a loved one with cancer:
Maura's cancer was not your cancer. I tell you nothing you don't already know, but allow me to say it anyway.
Maura's cancer was particularly aggressive (mitotic count 10/10, for those who care about such things). Most cancers are not.
But more than that, each body responds differently. Each person on the cancer journey draws on unique strengths. Each unique cancer interacts uniquely with each unique person.
While we all strive collectively, we cannot deny the personal nature of a life affected by cancer.
Please keep on living. You will be the one to survive. You will win. You will see your children get married and you will have grandchildren. Your life gives me hope and courage and meaning.
~Erin

Beauty

First of all, I apologize that there was no live feed--the internet at the church went down. Many hours of work on this end, but the failure was on the part of the ISP. I hear that the service was recorded. I'll find out more information later and let you know. I'm so sorry you were all inconvenienced.
Second, I do not know how I will thank everyone, but I will try in a later post and in notes, if I can ever get addresses.

Third, the memorial. Over 400 people in attendance. About 60 choir members from the university. Another 30 or so from the high school. Angelic singing from two awesome sopranos. Selections from the Rutter Requiem and Ubi Caritas et Amor from Maura's college choir, and The Lord Bless You and Keep You from her combined high school/college choir. A long video of photos and video clips of Maura's life. A wonderful obituary and message from a pastor of the church. A moving eulogy from Maura's choir director. Over 1000 flowers, mostly yellow, mostly sunflowers. At least half the church wearing yellow dresses, yellow shirts, yellow jewelry, yellow scarfs, ties, shawls, or shoes. Framed pictures of Maura -lots of pictures of Maura. 1200 origami cranes stretched from one end of the church to the other, hope and smiles and tears and gratitude.

Fourth, after the service. Hugs, remembrances, friends, strangers, lines, food, more food, way too much food, pesames, laughter, shared understanding with those who have also lost a child or recently lost a loved one, Mary fitting into Maura's impossibly small boots, friends just sitting in her room soaking up the remaining fragrance of her life.

Maura's Memorial Service - Link to Video Streaming

On Saturday, May 23, at 10:00 a.m. Houston time and 1200 hrs. in Brasil, Maura's memorial service will be streamed live. We hope. Streaming begins at 9:30 a.m. We hope. With so many family and friends in faraway states and countries, this seemed like a good idea. many thanks to Carlos and SBC staff for making it happen.

Click here to view:
mms://66.186.34.170/maura
If that link doesn't work, try the following link:
http://www.espressoweb.com/maura.asx

(EDIT: the links above don't work, so instead, go to the following entry from the month of June 2009 with a working link.)
http://mauraupdate.blogspot.com/2009/06/mauras-memorial-service.html

Maura's Story on Channel 2 (NBC Houston)

Click on the title, which will take you to the story and video that Channel 2 aired about Maura this evening. I haven't figured out how to embed the video yet.

Maura's Story

We were interviewed this afternoon and Maura's Story aired on our local Fox station tonight, just one day after Maura's death. We think that Mr. Stipes did a wonderful job of putting together a sensitive and loving portrait of our daughter. She would be happy to know that her story may increase sarcoma awareness, although, unfortunately, sarcoma was not specifically mentioned in the story.
Click on the blog entry title to be linked to the written story on line.