MAURA. Life after.

Two

2011-05-20T15:39:00.000-05:00

It's official: sledgehammer therapy works. I started off the day with three hours of pounding and destruction. Sometimes the tears were from the sheetrock dust in my eyes. Sometimes, from Maura in my head. Why did no one ever seriously tell me that hitting things felt so good?

In the evening, I went to the MD Anderson Blood Center to donate platelets. The technician did not want to take my platelets.
Who are you donating for?
What?
What patient are you donating for?
No one.
He wanted to draw whole blood because he said my veins were small and the needle was big. I think his opinion may have been influenced by the fact that I was the last appointment of the day, and he wasn't going to get to go home on time if he collected platelets. Or maybe he was truly worried that my vein would blow up and I wouldn't be able to donate anything? Either way, I would cause a problem.
What patient are you donating for?
No one in particular. I just know you need platelets.
MD Anderson needs whole blood, too.
I'm usually not very assertive. Usually.
Yes, but I want to donate platelets. I know that a patient has less of a chance of having a reaction if the platelets come from just one person.
The technician's shoulders slumped and his eyes drooped a bit. I bet his wife had dinner on the table. I should be less selfish and let him draw whole blood. It only takes a few minutes. His dinner would be covered with foil and stuck in the fridge by the time he got home if I insisted on platelets. He pleaded his case to Joel.
It's a 16-gage needle. The vein might blow.
Joel stood by me.
She wants to donate platelets.
The technician looked defeated.
Who are you donating for?
I want to donate in memory of my daughter who died from cancer two years ago today. Please let me try.
He instantly morphed into the complete healthcare professional. The tired man that had slipped through the cracks for a few minutes was just an aberration. He was both kind and efficient.
Everyone gets tired. I honestly don't know how health care workers don't lose it more often.

I thought that the 19th would be a wallowing day. It clearly wasn't. Pro-active planning on my part certainly helped. But, as I've said before, grieving has its own timetable--not always convenient, for sure. When I checked in with Danielle last night, she said that she was so focused on work that she also set aside wallowing. Wise woman that she is, she also said she knew it was building inside her and that she would soon need a day to let it out.
The pressure valve is always pushing toward the red mark.

Maura, we miss you so much. It was so neat to see so many of your friends still posting about you on their facebook walls.
And to you on yours.
I love you.

Week

2011-05-18T02:04:00.000-05:00

I find myself in the thick of the week leading up to the second anniversary of her death. Overwhelming memories. On this date, such-and-such happened. The fateful call to Dr. B. on Sunday, the Monday morning he told her that she was dying, the visit by the Dynamo, her graduation from SHSU, the conversations, the hospital full of people, her hospice set-up at home, the Goodbye concert, the constant flow of people, the vigil, the last hug.
Mother's Day was once again not the best. Not as bad as last year, but still quite difficult, partly, because I tried to donate blood but was rejected due to high bp; I took it hard because I wanted to give for Maura.
For my birthday, I proactively organized Chinese take-out and game night--that worked out well.
I'm working lots of hours in somewhat of a fog. Vietnam is dangled in front of me--postponed and reset and postponed and reset and postponed and reset.
Anticipating a bad day on the 19th, I took the day off. On that day, Joel and I will help tear down walls at the church. I hear that swinging a sledgehammer can be therapeutic. In the evening, I have an appointment at MD Anderson to donate platelets. If I can successfully donate, then I think I'll make a tradition of donating on this anniversary

Saved

Sue

2011-05-02T07:10:00.002-05:00

My blog friend, Sue, has inspired and comforted me a lot over the last years. She has made lots of blog friends feel better with her words and her example. She praises God when she's sick. She praises God when she is well. I asked and received her permission to re-post this from her blog:

SUNDAY, FEBRUARY 6, 2011 11:09 AM, CST

Speechless
For the first time on Caring Bridge I don’t know what to say. So much has happened in the last month and it has brought about many changes. I had a stroke, a brain bleed from the tumor we learned was in a critical area of the brain. It has left me a bit weak, but I know that God is healing me in His time. These are the facts.
But with God, facts are just incidental.
God moved mountains to get me the help I needed. He kept me alive. He brought me angels of goodness and mercy who fought for my needs. He opened doors to a neurosurgeon and a hospital that people come from all over the world to see. He gave me a special life-saving procedure in just days instead of months.
I find myself speechless when I think of the perfection of God’s love.
I find myself speechless when I think of the perfect plan God holds in place for all of us.
I find myself speechless when I see the love and devotion of my family...my children, my adoring husband.
I find myself speechless by the generosity of strangers and friends who have reached out to me.
All I can do is praise God. Thank God. Stay open to the future with a hope and a purpose that must be God given.
And I thank you for taking this journey with me. For your prayers, especially. I feel them, and they light up my life.
Speechless isn’t such a bad thing. It transcends the facts and looks into the heart for the real joy of being alive.

SUNDAY, MAY 1, 2011 12:22 PM, CDT

The LORD is my light and my salvation—
whom shall I fear?
The LORD is the stronghold of my life—
of whom shall I be afraid?When the wicked advance against me
to devour me,it is my enemies and my foes
who will stumble and fall.
though an army besiege me,
my heart will not fear;
though war break out against me,
even then I will be confident.
Psalm 27: 1-3

Stumbling and Falling
Did you ever think you could be praising God for stumbling and falling?
I know that sounds ridiculous, but I have been doing just that since early February when I returned home from weeks in three hospitals. I found out I had a brain lesion that was bleeding into the pons area of the brain. I also found out just how serious a situation that actually was. Apparently, if one is to have brain metastasis from kidney cancer, the pons is the last place one would want it to take up residence (is there really a good place in the brain for cancer, she asks innocently???).
So there it was: added to the cancer mets in the lungs, the lymph glands, the mediastinum, and the anterior acetabulum hip bone...now there was cancer in the brain.
I kinda like my brain. I relied heavily on it throughout my life. Perhaps too heavily, I now realize. You see, I relied more on my brain, my wit, my wisdom, than I did on God.
Cancer taught me to rely on God when I was told I would most likely die on the table during my first surgery (kidney cancer: kidney removal) almost seven years ago. Chalk up one for a little less brain reliance and more God dependence.
Cancer taught me to rely on God when I was diagnosed with two more cancers: thyroid and sarcoma. Chalk up two and three opportunities to rely less on my brain and depend more on God.
And then came the “biggie.” Cancer in the brain. Cancer in the part of the brain that dictates most of what makes us human, what makes us function.
Apparently, the brain lesion had been bleeding for about three months. As is typical when relying on brain wisdom rather than God truth, I plowed through two of those months ignoring my symptoms. I even mentioned to my oncologist that it “was as if a switch had gone off in my brain.” Of course, when he suggested an MRI, I said no.
That’s what you get when you rely on your brain: FEAR-based decisions.
When I ended up in three hospitals after a month of vomiting whenever I lifted my head off the pillow...after a month of not being able to brush my teeth because I couldn’t keep anything in my mouth...after a month of not eating one morsel of food or water...it finally became obvious even to me...
This stubborn, fearful, controlling person was alive ONLY because of the grace and mercy of God.
He had protected me, covered me with His love, despite-or maybe because of-my stupidity.
Chalk up number four in the Opportunity to Know the Truth department!
I felt so loved, so protected.
So grateful.
God had kept me alive for a purpose, for a divine reason that is still almost completely unknown to me.
Except for this: To share with you the significance of praising God for stumbling and falling.
When I returned home from the hospitals, I was very weak from weeks of inactivity, from very limited nutrition, and from my body fighting all the invader cells that have taken up residence. A friend visited me and told me about watching a television minister she loves and respects. This minister read Psalm 27:2 and declared she had had revelation during meditation that this verse was a direct reference to cancer.
“When the wicked advance against me to devour me, it is my enemies and my foes who will stumble and fall.”
When cancer cells would try to increase in order to devour my healthy body tissue, they would HAVE to stumble and fall!
This was God’s word to us. This was God’s promise to us. This was God’s purpose for us...for us to be more than conquerors...for us to have the strength to do all things through Him.
I spent much of my life arguing, with people, with ideas, with my own brain-created thoughts.
I DON’T argue with God.
So, I started praising God.
For protecting me.
For loving me.
For His Word.
And His Word said that the cancer cells in my body were stumbling and falling.
And so I praise Him, for His Word, for His Truth.
And for the cancer cells stumbling and falling.
What is attacking you? Is it a thought wrought with fear? Is it pain in your body or your heart? Is it illness? Is it lack?
Whatever it may be, stop worrying and start praising. Praise with confidence that what God has declared, He is able to deliver. Praise with faith that in God’s perfect timing there will be tangible results.
Praise God for stumbling and falling. Whenever a fearful thought takes control of your brain, praise God that the (insert fearful thought here) is stumbling and falling.
And then wait...in Truth...in Peace...in Love...in Confidence...in Hopeful Expectation...in God.
By the way, I had scans the end of March. After three months of treatment that did not work (this treatment ended in December)... after another three months of no treatment because I needed to rebuild my body after the brain bleed...
The radiology report stated there was SIGNIFICANT REDUCTION in all mets!!
The oncologist was confused.
He is a man of science.
I am blessed.
I am a child of God.

Teal Out

2011-04-16T10:47:00.001-05:00

Sam Houston State University's Colleges Against Cancer, a student club affiliated with the American Cancer Society, sponsored a SHSU "Teal Out" baseball game to promote SARCOMA awareness and raise money for the ACS. We were invited to attend, and Joel threw out the first pitch. Between innings the announcer read facts about sarcoma, and they had information about sarcoma at the entrances. The shirts that they sold were teal. The writing said, "Teal We Find a Cure. 2011. In memory of Maura de Souza"
It was pretty cool.

Proton Therapy

2011-04-15T22:02:00.004-05:00

MD Anderson asked me to post a link to the video below, about a boy who survived cancer through the use of proton therapy. But first, here is a little blurb I found on their website about the use of proton therapy on sarcomas.

Sarcomas are rare, malignant tumors found almost anywhere in the body in both children and adults. Because most sarcomas are quite rare, many oncologists may have treated few patients with these tumors, if any. MD Anderson Cancer Center treats more sarcoma patients than any other cancer hospital, enabling physicians to build on their expertise in an ongoing effort to discover new therapies and diagnostic methods. This same experience in dealing with sarcomas extends to MD Anderson’s Proton Therapy Center and the development of proton therapy treatment for many types of sarcomas. Most often, proton therapy is used in combination with other types of treatment for sarcomas. Surgery is the most common treatment for soft tissue sarcomas. Radiation as a stand-alone treatment for sarcoma is not as common but can be used for patients who are not healthy enough for surgery or to ease pain and other symptoms of disease

Sarcomas can be treated with it, but not Maura's unfortunately; her tumors were both too big and too numerous. Plus, I don't think it's used yet to treat all types of sarcomas, and since her sarcoma defied type, not a chance. Maybe it will be different in a few years.

It makes me happy to hear of others surviving cancer, especially kids--I feel like their victory is also mine. But, to be honest, it also saddens me as I wish it could have been so for Maura.

Rest in Peace, Elsa Dias

2011-03-22T01:13:00.000-05:00

Elsa Dias died early Sunday morning after a ten-year battle with SARCOMA. Despite the fact that she submitted herself to several experimental sarcoma drug treatments, calling herself a lab rat, and had at least nine surgeries to remove new tumors, I think Elsa would prefer to be remembered for other things: She loved her two daughters, Filipa and Maya, and her husband, whose name escapes me at the moment. She loved her garden, and making beautiful flowers grow. She loved red shoes and the music of Leonard Cohen--lots of other great artists, too, but she really flipped over Leonard Cohen. She encouraged and inspired many others afflicted with sarcoma. She was particularly kind to me after Maura died, understanding the cruel nature of the disease and sympathizing with my loss from a mother's perspective.
Sarcoma has killed one more bright, beautiful person.

WWMD

2011-02-11T17:12:00.000-06:00

I finished loading my groceries in the back of the car and pushed the grocery cart between the nearby cars in the Sam's parking lot--just cozy enough so the cart wouldn't dent its neighbors, as long as no one swung open a car door too widely.
Hmmph. Maura would have taken the cart to the shopping cart area marked off with guardrails.

I know this because she always took the shopping cart to its proper place, even if I had already scooted it to the sweet spot between cars. Once I asked her why. "Because I wouldn't want to be the person that had to fetch carts all over the parking lot. This makes it easier for that guy."

Back in the Sam's parking lot, I looked for the telltale guardrails. They were several parking spots away.
I dismissed the idea and hopped into the van, put the keys in the ignition, and...

What Would Maura Do?

I hopped out of the van, carefully guided my discarded cart out from between the cars and walked it pass the ten parking spots to the shopping cart area.

I haven't left a shopping cart unguarded since.

Faith

2011-02-03T07:33:00.000-06:00

I find that my faith has been strengthened through all of this. Initially, doubts, but, ultimately, a recognition of the obvious: we will see her again.
And it will be a joyous reunion.
"...the redeemed of the Lord shall return...and everlasting joy shall be upon their heads..." Isaiah 51:11

Marine

2011-01-29T09:39:00.002-06:00

Joel and I were recalling a time about a month after Maura's death. It was a good 90+ degrees, a hot a humid Houston summer day. And the air conditioning was broken. Walking up the path to our front door was a United States Marine in full dress blues. Is that what the fancy uniform is called? He looked impressive, almost regal. When we answered the doorbell, I recognized him: Michael, a boy I hadn't seen since he was in middle school. Maura had a crush on him when she was in sixth grade. He played the Wizard to her Wicked Witch of the West in the school play.

We laughed a lot when she got that part. Type casting? No, but she must have shown them that she could cackle. She came home crying the day that the cast list was posted. I tried to console her, knowing that sixth-graders rarely got cast in the play. She sobbed and sobbed, unable to speak.
I asked, knowing the answer already, "You didn't get a part in the play?"
"Yes, I did," she managed to blurt out, "I'm the Wicked Witch of the West." Giant sob.
What? I was confused. Was she sad because she was cast as the witch? It's a great part, but maybe she wanted to be somebody prettier?"
"Are you upset that you got cast as the witch?"
She stopped crying for a nano-second to give me that wonderful look of sheer disgust that I could be so stupid.
(I did not see the look again until she was in 8th grade, when it became her constant companion for a year.) Then, the floodwaters again. "So-and-so was mean to me on the bus."
This is what parents are good at: laughing on the inside, while maintaining a sympathetic tone on the outside.
What followed was an awesome discussion about not letting others rob you of your joy, one parental talk that she listened to and obviously put into practice.

Eleven years later, the Wizard, disguised as a grown-up marine, came to pay his respects. He brought flowers and apologized for missing the funeral, but he was stationed in California and couldn't get back until now. I was a lousy hostess, still very much out of my mind. He was obviously uncomfortable from the heat inside my house, but I think he had to ask for water because I forgot to offer him anything. His uniform looked heavy. Someone ran for the small fan and aimed it directly on him. We spoke of his future and Maura's past.
A good visit.

Blue

2011-01-27T23:04:00.000-06:00

I suppose it's inevitable. The bloggers I follow are mostly people fighting cancer of various kinds.
One of them just found out she has mets in the brain.
Another one died this week.
Both of them have inspired others with their words.
I admire them.
I will miss Daria.
Please pray for Sue.

Dear Friend,

2011-01-14T18:10:00.000-06:00

First, never ever ever apologize for writing to me. You are right: I DO get it. I'm one of the few people you know who truly gets it. I reached out to you last fall because I knew you needed someone like me and, frankly, I need you, too. It's true that I've lived this longer than you have, but so what? My support group leader has been living this new reality for seven years, and she still needs someone like me, too. Just like I need her. And, btw, she is very emotionally healthy now.
And, someday, you will, unfortunately, have the opportunity to be there for someone else who will join "the wretched club." It will be a tremendous blessing to you.

I know I've said this to you before: everything you are feeling , I have felt (feel still, sometimes or lots of times): the devastating loss, the agonizing , hard-to-breathe heartbreak, the absolute hopelessness and searing pain. Agghh! It's horrible and awful and so incredibly hard to think it could ever get easier.

Forget the idea of moving forward. I think it's a bad phrase because we don't EVER want to move forward if that means moving AWAY from our daughters. So, leave that phrase to the blessedly ignorant. I haven't come up with a great substitute phrase, but it needs to be one that doesn't involve going away, although I like the whole journey imagery. Maybe think of it as adjusting, learning to live in your new reality. I'm still working on the perfect sentence. When I find it, let's market it and make a fortune!

Do not hide her pictures or nick knacks. Do not avoid her friends. Do not avoid talking about her. Do not forbid the mention of her name. That doesn't mean that you can't postpone talking about her if it makes you uncomfortable. Some people you can cry in front of, others, not so much. And some days you don't feel like you can handle the tears, so it's okay to avoid and postpone. Example: Lydia brought me the DVD of the play that she wrote and performed about Maura. I did not watch it while she was in town, nor did I watch it with Joel or Danielle. I watched it by myself just this Sunday. I thought I might prefer to cry by myself, without having anyone check on me or worry about me. And I knew that I might want to wail a bit; yes, wail...loudly. So, I just needed to be alone.

I'm not trained, so I don't want to say yes or no to you being clinically depressed. Please consult a qualified physician.

But, regular depressed? Heck, yeah. It's called "sadness." You are very, very sad. And it's normal. It's an emotion that God invented. And deep sadness proves that we have loved deeply.
I think that after a year you might be able to look back and see that the pain has shifted to where it's not right on top of your heart so much.
I know you don't want to feel the pain, and I can promise that it will get better. It will get better. It will get better.
Here is my prescription:
Go out, even when you don't feel like it.
Don't expect to feel better when you do. You might, but probably not.
Go grocery shopping, even if you just push the cart.
Walk around the block.
Put gas in the car.
Go to your daughter's house.
Go out to lunch.
Go to church, but sit in the back.
Rake a few leaves...not many...in the front yard.
The trick is to push yourself to go out, but not to have any expectations of feeling any better.
The triumph is simply to get out of the house and within 10-50 feet of another human being not closely related to you.
Eventually, you'll get stronger, but you won't notice it for a long time.

The what-ifs can be devastating. It's hard not to fall into that trap. Every time I start to wonder about her medical treatment, Joel reminds me, "No more pain." he's right. Anything else would have prolonged her suffering. God didn't need one more radical treatment to cure her. He could have done so on Day 1. Or Day 301. That brings up another source of pain: why didn't He? I honestly don't have an answer for that, or, better said, I don't have an answer that is good enough. None of the answers I've come up with, or the ones that others have kindly bestowed upon me are good enough. Duh. Because nothing I can imagine can justify God not wanting my daughter to live here on this earth with me. Nothing. And I fruitlessly keep trying to imagine what could. That's where faith really helps. Or is it hope? Or both. In either case, most of the time, I'm okay with waiting until Eternity to find out the answer. I suppose by that time, it won't matter anymore. (Hope involves waiting...that's always easier to understand in Spanish and Portuguese since the two words are one and the same)

And remember that happiness and sadness co-exist.

Rest in Peace, Elizabeth Edwards

2010-12-07T18:37:00.000-06:00

May God comfort her family and friends.

Toi noi tieng Viet khong gioi

2010-12-04T22:16:00.005-06:00

A few months ago, my cousin told me that creating "new neural pathways" was the best thing that we could do for ourselves as we traveled through our grief.
New pathways come from new experiences.
Well, I've got myself a winner.
I've been selected for an amazing assignment at work: teaching English in Vietnam for six months. The college is establishing a unique partnership with a college in Saigon. They are temporarily releasing me from my job as academic advisor, and I am returning to my roots as an ESOL teacher. Joel will take a leave of absence to come with me.
We leave in February.
We're soooo excited!

Thanksgiving

2010-12-03T07:06:00.006-06:00

Plan A:
With Joel working a 12-hour shift on Thanksgiving Day and the girls being out-of-state/country, I had chosen to stay home last Thursday to rest and to wallow.

Plan B:
Wednesday morning, during my drive to work, I realized I didn't feel like wallowing--I felt like cooking. I want to have Thanksgiving. I avoided it last year, but I realized that this year I wanted it back. So I got on the phone and invited some international and ESOL students. Six boys without families in town. Five countries.
When I called one young man and his roommate, I spoke in clear, simple English.
"My husband and I invite you to Thanksgiving dinner tomorrow night."
Without hesitation, he responded, "Okay. We come."

I skipped the traditional early afternoon start time and told them to come at 7PM. That way, I'd have all day to cook, taking some of the pressure off. After work on Wednesday, I did the traditional last-minute Thanksgiving grocery-who-still-has-any-green-onions-left-why-can't-they-stock-enough-mushroom-soup-it's-not-like-it's-going-to-spoil-if-they-don't-sell-it-shopping.
I cooked at a leisurely pace on Thursday. Turkey, stuffing, potatoes, sweet potatoes, green salad, broccoli salad, lots of veggies, cranberry sauce, cranberry relish, and store-bought pecan pie. Joel arrived two hours early. Hurray!
They arrived right on time. Two boys from Guinea. One from Nigeria. One from Liberia. One from Somalia. One from Syria. Plus Joel from Brazil and me from the USA. What a fun mix of countries and cultures! A couple of the boys came to the U.S. as refugees. Some had obtained diversity visas. One was on a student visa. None of them had family here. A couple of them don't have family anywhere. I had games planned and the telling of the Thanksgiving story, etc. , in case the conversation lagged. It didn't. The one unifying theme throughout the night's talk? Soccer. When they found out that Joel was from Brazil, they were all pretty excited to talk about the Brazilian national soccer team, famous Brazilian players from a time before they were even born, several exciting games in the last few World Cups, and more. They exchanged numbers.
And, as they left, they said that Joel and I were like parents to them now.

I am thankful for so many things. This Thanksgiving, I was thankful for Thanksgiving.

1 1/2

2010-11-19T21:07:00.001-06:00

One and a half years today.
Exactly.
And today is exactly one year since Card Blue passed away.
and today is exactly two months since Jill passed away.
I hate sarcoma.

Mermaid, Part 2

2010-11-10T10:54:00.004-06:00

Mermaid seems to be the Maura theme o' the month. Ater we rented the mermaid beach house, and Matt sent the video from Korea (posted last Sunday) with the mermaid on the beach, Joao put together another video from this summer. He and Lydia returned to Buzios, RJ, Brazil, to release some of Maura's ashes,in the exact spot where Lydia and Maura had played seven years earlier.
My thoughts are also with Chris, who lost her sweet daughter,Jillian, not two months ago. Chris, I share this with you.

Mermaid

2010-11-07T21:52:00.003-06:00

Lydia asked, "Do you think that we could have a normal Christmas? Joao has never seen us as a normal family."
She's right. Her husband entered our lives after we were already in crisis. He proposed to our daughter during his second visit to our home. I think he knew that Lydia would want her family around her to celebrate the engagement...and he had to talk to Joel before he asked Lydia. That was in February of last year.
He had been to our home the Thanksgiving before. On Thanksgiving morning, Maura and I ran to pick them up at the airport, hurried to drop them off at home where they could sleep, and rushed to MD Anderson for chemo. Maura felt pretty good around Thanksgiving. When it came time to go around the table that evening and tell what we were thankful for, it was pretty unanimous:
We were thankful for Maura.
Even Maura was thankful for Maura.
For being there.
Because we knew how close we had come to losing her.
There were lots of tears. Joao's a quiet guy. I can only imagine what must have been going through his head.
He proposed to Lydia during his next visit the following February, in the parking lot in front of the Dollar Store, next to the grocery store where Joel had sent them on an imaginary errand to get a pecan pie. (It will make a good story for their kids.) Joel had cooked up that excuse to give Joao an opportunity to ask Lydia in private because she and Maura had been glued to each other since Lydia's arrival.
We toasted with champagne that Joao had confidently packed in his suitcase, and we connected with Danielle, who was still in Chicago, by phone and by camera. More tears, but happy ones. Wedding plans were made.
Three months later, Maura died.
Joel and I escaped to Mexico last Thanksgiving. We did not celebrate Christmas, either. Grief consumed our family last year and this year. And my dear son-in-law tried to console his bride, feeling at sixes and sevens in the way that those who have never grieved feel because, of course, how can they know? How can anyone possibly know until having joined this wretched club?
This year, neither of the girls will be here for Thanksgiving and Joel will be working, so I think we'll skip this one, too.
But we have plans for Christmas. Yes. We will celebrate Christmas...the religious and the traditional. Low key, for sure, but there will be a Tree. And we will be together. And we will do the normal things that we do during the Christmas season like cook our family's traditional Christmas foods. And play games. And sit around talking for hours, and go to church, and read the Christmas story before we open presents, and have Christmas breakfast casserole. And sing Christmas carols. and enjoy each other's company. There will be one major difference, apart from Maura's obvious absence: This past Friday, I rented a beach house for when the girls and Joao are here because we moved to a tiny, one-bedroom condo in May and don't have the four-bedroom-room-enough-for-a-soccer-team house that we've always had. We needed room for everyone to sleep and move around without tripping over each other. It will be cold (for Texas) and probably rainy, but it will be big enough for all of us plus a tree and any visitors. It's so cute! It is perfectly decorated with sea creatures. A large bas relief of a mermaid graces one wall and a framed mermaid poster hangs on another. They both reminded me of Maura--not an uncommon phenomenon--because of their beauty and flowing, long, blond hair. Appropriately enough, the house is called The Mermaid. After getting off the phone with the realtor, I felt enormous satisfaction in knowing that the family would be together in a nice place for Christmas. I thought Maura would have approved of my choice of houses, too. She would have liked the location, the beach, the decor, everything. Yes, I feel good about this.
The next day, I received a video from Matt. He and Kara had released some of Maura's ashes at a beach in Busan, South Korea in September, but I didn't know about it until I saw the video. Here is the short video:

Bully

2010-10-17T15:25:00.003-05:00

Joel and I went to a movie a couple nights ago--a movie about a boy and a vampire girl--a kid vampire. I thought it would be twilighty and easy. Wrong! It was dark and scary. Aggghh! I don't like scary movies. But it was more than a vampire movie...it spoke of bullying and ostracism and how painful and damaging that can be for a child. I know this has nothing to do with what I generally blog about, but it's worth saying: Bullying kills children. It results in murder, suicide, and immeasurable pain. And home is no longer a safe haven from bullying because of texts, email, facebook, and other social media.
One of the things that I've heard so often is that Maura actively sought to include everyone, especially those who were new or feeling awkward or lonely. Such a simple act and yet, her kindness was important enough that many people have wanted to share it with me.
I hope her kindness is kloned and shared.

I stole this picture from Sheena's website.

Easy

2010-10-10T22:01:00.003-05:00

Here's an easy peasy thing you can do every day for the next week or so to promote SARCOMA AWARENESS.
Click on the link below. Ooh and aahh over the cool black Nascar covered in yellow sarcoma ribbons. Then click on the VOTE button in the bottom right-hand corner. Everyday for the next week.No money to pay. No signing up for anything. No SPAM.
This could mean awareness and funding for sarcoma research.
You can vote every day from every computer available :)
http://www.sponsafier.com/#/gallery/view/360505

Vote everyday and tell your friends to vote, too.

Social

2010-10-09T21:50:00.003-05:00

During Maura's final days, while she lay in a hospital bed at M.D. Anderson, her room filled well past the fire code limit with friends and relatives, the conversation somehow turned to dying and Heaven.
Maura furrowed her brow and expressed her chief concern: "But I'm not going to know anybody there!"
The room erupted in laughter. Leave it to Maura to be more concerned about the social aspects of heaven than the imminent act of dying!

Book Signing Pic

2010-10-03T12:27:00.003-05:00

Joel, me, nancy Brinker, Joni Rodgers, Gary Rodgers

Race Pics

2010-10-03T12:22:00.002-05:00

Race

2010-10-03T10:47:00.003-05:00

My last post oozed frustration--frustration because few people have heard of sarcoma, because sarcoma is under-funded and under-researched; because almost no FDA-approved drugs exist to fight it; because drug companies don't want to spend money to develop treatments for a life-threatening disease that relatively few people get, but they are willing to spend millions to develop a new cold medicine; because sarcoma kills; because sarcoma kills children and young adults; because sarcoma killed Jillian; because sarcoma killed Maura; because I miss my daughter.

Yesterday, however, I discovered a partial antidote to that frustration: the 5K race/run/walk.

Joel and I signed up for the Susan G. Komen Race for the Cure...just the walking event...no big deal...5k, a mere 3.1 miles. Preparation? I took some Advil for my bum hip and my bum ankle and I wore my hiking boots to stabilize my ankle. That's all.
Appropriately enough, we joined a team led by a young, energetic woman who lost a limb to sarcoma. Also part of the team of about 30 were my co-worker, Erika, and her sister, who is about 33 and is fighting breast cancer.
About 35,000 people showed up early in the morning to take part in the competitive run, the non-competitive run, or the walk, which was blessed with efficient organization and perfect weather.
On our backs, we had pinned the In memory of... cards with Maura's name. Almost everyone's back had some declaration in honor of someone. Breast cancer survivors wore special shirts and caps. We walked in relative silence, my only discomfort, apart from the normal pain in hip and ankle, being the somewhat claustrophobic feeling of walking with such a huge crowd, people pressed close to me for the first mile or so, after which the distance between one small group and another opened up.
The last kilometer, spectators lines the streets clapping and cheering us on. Emotions welled up and I cried for Maura. Just before the finish line, maybe 50 yards or so, breast cancer survivors walked or ran down a designated Survivors' Path, lined in pink, with supporters, four-deep, cheering and crying. It was all quite beautiful. And powerful. I think that the 34,998 other participants felt the same.
Joel and I agreed we would participate in as many cancer walks as we could, regardless of the cancer.
Maybe create one in Huntsville to raise awareness and funds for sarcoma research?

The night before the race, we were at the book signing and able to meet Nancy Brinker, an amazingly brilliant and focused woman, who has truly given her life to the eradication of breast cancer. The second half of her book tells us of the formation of Susan G. Komen for the Cure. It could be sub-titled How to Get Something Done and serve as a textbook for entrepreneurs.

What a weekend!

Cancer Envy

2010-09-30T23:52:00.004-05:00

SARCOMA SARCOMA SARCOMA SARCOMA SARCOMA SARCOMA SARCOMA SARCOMA SARCOMA SARCOMA SARCOMA SARCOMA SARCOMA SARCOMA SARCOMA SARCOMA SARCOMA SARCOMA SARCOMA SARCOMA SARCOMA SARCOMA SARCOMA SARCOMA S
and in case you didn't hear, SARCOMA.
Jillian died last week from SARCOMA. Twenty-three, beautiful, loving, full of life. She loved theatre and choir.
Sarcoma attacks the young. It is a disease of the young. It is childhood cancer. It is young adult cancer... and some older people get it, too. SARCOMA steals our children. Chris's daughter. My daughter.
SARCOMA is different.
SARCOMA is under-researched. SARCOMA is under-funded.
Jillian died eight weeks before her wedding.
SARCOMA is unfair.
Maura died just shy of 23. She, too, was plucked from her full life. And from mine. And her sisters' and her dad's and everyone's life that knew her and loved her. Plucked. Excised. Resected.

Tomorrow I will celebrate the beginning of breast cancer awareness month by attending the book signing for Promise Me. I am so grateful to have Maura remembered in this book. I am so happy to have SARCOMA mentioned.
And, knowing that my other two daughters and myself have more of a chance of getting breast cancer than SARCOMA, I am thankful for the great strides that have been made to cure breast cancer.
And Joel and I will be part of the Susan G. Komen 5k Walk for the Cure on Saturday.
I wish it were that simple.
To walk and find a cure.

I wish Maura had had breast cancer instead of SARCOMA. Then, when the adriamicin didn't work, there would have been lots of other approved, vetted drugs available to continue the fight.

Most people don't even know what SARCOMA is.

And we will walk in the hope that fewer women will die or suffer from breast cancer. And that the strides in breast cancer treatment will somehow be beneficial to SARCOMA treatment too.

Make It Last

2010-09-26T14:12:00.003-05:00

I've been slowly reading Promise Me.
Couldn't read anything but the "Maura vignette" for over a week after getting the book. Then, I dove into the rest this weekend.
Today, I biked home after church, stopping at a nifty tea room for a cup of soothing something-or-other and a chance to read some more of the book. I love the whole idea of biking somewhere I can read while sipping tea. It's all part of our new hip urban lifestyle. All I need are some organic cotton clothes and I'll be set. But, hey, I was wearing yoga pants, so that ought to count for something.
I don't know how I got through the chapter entitled "Make It Last", to tell you the truth. I had to stop every minute or so to wipe tears from my eyes and blow my nose on a napkin. I have no idea what the people next to me thought, but they kept peering at me over their laptops. Sniveling isn't part of the whole hip urban lifestyle.
The chapter details the time following Suzy's reoccurence and metastasis of her breast cancer until her death. So much of it rang so true for me, and I saw myself in Nancy and in her mom. I saw Joel in Suzy's husband and father. And I saw so much of Danielle and Lydia in Nancy.
I share similar experiences: Helping Maura to bathe when she was too weak; helping her cross the street; waiting with her time and again at MD Anderson; sometimes not talking; sometimes words pouring out so fast they tumbled onto each other. WAtching and listening as Maura allowed herself to be heartbroken for dreams unrealized.
But here is the quote that leaves me sobbing right now as well as at the Tea House:

"Because this is the place you come to when someone you love is slowly dying: You're desperate for it to be over, and even more desperate to make it last."

Promise Me: Maura de Souza, the smile that just won't stop

2010-09-21T21:58:00.000-05:00

Promise Me: Maura de Souza, the smile that just won't stop:
Here is a link about Maura on the Promise Me blog. I'm excited that I'll finally get to meet Nancy Brinker on Friday, October 1 when she comes to the Champions Barnes & Noble in Spring for a book signing. I'm bringing the copy I have. I hope they don't mind that I bought it somewhere else.

Promise Me

2010-09-15T20:52:00.002-05:00

Yesterday, I forgot to tell you the title of the book:
Promise Me: How a Sister's Love Launched the Global Movement to End Breast Cancer

Book (surprise!)

2010-09-14T21:51:00.004-05:00

Nancy Brinker is the sister of Susan G. Komen and the founder of the organization that bears her sister's name. Thousands of women (and not a few men) owe their lives to this phenomenal woman, who created a revolution in the world of breast cancer awareness, prevention, and treatment.
Her memoir was released today, September 14, 2010. It is the story of sisterhood, of growing up in more innocent times, of love and marriage, of Susan's cancer, of Nancy's promise to her dying sister, and of the birth and growth of an organization that is synonymous with hope.
In between and separate from the primary story the reader finds vignettes about breast cancer survivors, some who are no longer surviving, breast cancer warriors, breast cancer advocates, breast cancer champions, breast cancer heroes, breast cancer history makers, breast cancer, breast cancer, breast cancer. Of course it's breast cancer...it's Susan G. Komen.
But, miraculously, there is one vignette, just one, that mentions another cancer--sarcoma.
It is a vignette about Maura.
Yes, a slender piece of Maura's story is found in a book authored by the founder of the Susan G. Komen foundation. Yes, sarcoma gets a mention in a book by a breast cancer icon. In the world of rare cancers, anything that promotes awareness is a plus.
Her message is simple, albeit difficult for me to embrace: Underfunding of research for rare cancers is a dreary fact. But a national movement to end all cancer has to begin somewhere, and awareness, funding, research, and innovation in one area ultimately benefit all.
And my dear, sweet, Maura, who lives eternally in Heaven, is made just a little bit more immortal here on earth as well--because I believe in the eternity of the written word.
So here is my shameless plug for the book and for my friend's online bookstore: Kathy is a single mother of three and is currently fighting sarcoma. Please buy the book through her Amazon affiliate: http://www.greatbooksforu.com/

Earrings

2010-09-11T00:52:00.003-05:00

Someone complimented me for my funky, blue-green, fish earrings.
I blurted out, "Yeah, that's how I know that I'm getting better--because I started to wear my earrings again."
What?
I had not consciously thought that, but as soon as I said it, I knew it was true.
I have a great collection of cheap, gaudy earrings. The bigger and cheaper, the better. I am proud that most items in my collection cost less than $2.00. I hang them on a piece of embroidery plastic that I fixed up and placed on my wall like a piece of art.
My collection is nothing compared to Maura's. She was the Earring Queen. I was merely her Handmaiden. After she died, I'm not quite sure what I did with her earrings. Certain ones she had willed to certain people. I know I gave some away, but I can't really remember doing it. It's amazing how much I still don't remember from the months after her death.
But I know that a few pairs belonging to Maura are now on my earring board.
I don't remember when I stopped wearing them. I think it was during her illness. I lost interest. And afterwards, well, there was no joy in wearing them. Wearing flashy earrings for me is like wearing high heels for Elsa(red ones) and Michelle. They are fun, pretty, and make me feel good.
But I didn't feel good.
Earrings bring me small joys, but I didn't want to be joyful.
Because being joyful means I've forgotten Maura.
Duh, of course I know that is not true. But feelings are feelings. Sometimes it's just better to let them be rather than try to explain or understand them. They seem to work themselves out most of the time.. .
In any case, I've started wearing them again. Golden grass discs from Brazil. Red hot chili peppers from Italy. Dangling dyed fish scales. Beads and bark and seeds. Feathers and wind-catchers. Wires and colored stones and bamboo.

Run, Maura, Run!!

2010-06-05T21:28:00.004-05:00

Maura's name twin is running a marathon,--and raising cancer awareness and remembering our Maura as she does. She talks about running for Maura and special people in her life here and she talks about googling her name and learning about Maura here.

Yahrzeit

2010-05-19T00:01:00.000-05:00

May 19, 2010

God full of mercy who dwells on high
Grant perfect rest, on the wings of Your Divine Presence
among the holy and the pure
who shine in the brightness of the firmament,
to the soul of Maura Cassiana de Souza,
who has gone to her eternal rest,
as all her family and friends
pray for the elevation of her soul.
Her resting place shall be in the Garden of Eden.
Therefore, the Master of mercy will care for her
under the protection of His wings for all time
And bind her soul in the bond of everlasting life.
God is her inheritance and she will rest in peace
and let us say Amen.

May His illustrious name become increasingly great and holy
In the world that He created according to His will,
and may He establish His kingdom
In your lifetime and in your days
and in the lifetime of all the house of Israel
Speedily and soon. And say amen

May His illustrious name be blessed always and forever.
Blessed, praised, glorified, exalted, extolled
Honored, raised up and acclaimed
be the name of the Holy one blessed be He
beyond every blessing hymn, praise and consolation
that is uttered in the world. And let us say amen

May abundant peace from heaven, and life
Be upon us and upon all Israel. And say Amen.

from Kei

2010-05-17T22:51:00.003-05:00

I got a note from Thad Bell, the photographer whose blog I linked to a couple of weeks ago with pictures and video of Kei wearing the Live Teal bracelet. He tells a neat story about Kei:

I have always meant to ask Kei about the Live Teal bracelet he wears but now I know. One of Kei's best friends on the team is Teal Bunbury. Kei has even tweeted that they were meant to be friends since he wears the Live Teal bracelet.

He definitely does still wear it. Look in http://www.tpbphoto.com/Sports/KC-Wizards-practice-4212010/11938356_4KYLK#845507045_ayrPu and you can see a bunch of shots of Kei with it on. In the middle of that gallery Kei was goofing around and playing goalie. He borrowed some gloves and was blocking shots barefooted.

When he got done playing around, he took the gloves off and left them by the goal for the keeper that owned them and walked in to the locker room. About 30 seconds later he came running back, the bracelet had been pulled of by the gloves and when he noticed it he ran back and found it quickly.

He definitely still wears it.

Kei Kamara tried to post a note to Maura on the blog then, but he had some trouble posting, so he sent his note to Danielle. Here is his letter to Maura.

Hi Maura its me Kei ur fav soccer player...haha, i got a lot to tell u. 1st i hope u r in a better place and just no that u r loved. so the Live Teal band u gave me made it a long way. i always had it on, as u can see mummy stalked my photos and found it...haha. also this yr KC Wizards drafted a play in the 1st round and his name is "TEAL Bunbury" so he always tells ppl i wear it cuz of him haha. but sadly couple weeks ago when i was in Houston for a game, i took off my Live Teal band and left it in the lockroom so i tell myself that i left it in good hands, "in houston and at the Dynamo Stadium."
well you keep resting and your friends and Family love you.
God bless.

Chronology

2010-05-17T08:47:00.002-05:00

This week has been full of meaningful moments and meaningful memories, all with the fast-approaching anniversary in view.
May 12:
2009.One week before she died. SHSU came to confer the Bachelor of Music degree. I think it was as meaningful for them as it was for her, maybe more so.
2010. I fell apart and couldn't make it past the parking lot to work.
May 13:
1997. My mom died. My first experience with grief.
2008. Got pathology slides and reports to MD Anderson for review.
2009. We began to talk about hospice. And choices.
2010. Me, hanging on by a thread.
May 14
2008. Spent my birthday waiting with Maura and family and friends for news from M.D. Anderson, not really expecting an answer so soon. I received a homemade card from Maura that I will cherish forever.
2009. Spent my birthday waiting with Maura and family and friends, but this time in the hospital, waiting for her to die, wishing it to be delayed. Houston Dynamo came to visit.
2010. Spent my birthday with family and friends at Maura's high school. The Spring High School Choir named a scholarship after her: the Maura Cassiana De Souza Memorial Scholarship. Katie gave a speech about Maura. Her former choir teacher, Mrs. Eaton, spoke about her, and we were asked to present the plaque to the winner this first year. The plaque is beautiful. Dark wood with a center photo of sunflowers. The winner's name will be added each year on a separate nameplate and the plaque will be housed in the choir room. I didn't look to see how much the scholarship was for.
May 15.
2009. Channel 13 came to interview her in the hospital for something completely unrelated to Maura and her condition. Rather, the hospital had imposed a quiet hour to help patients rest, and they asked to interview Maura, since 90 % of the guests on the floor were there to visit her, and 100% of the time, there were people in her room. You can see that video here
2010. Joao and Lydia treated us to a night and day in San Antonio. We ate at the restaurant at the top of the Tower of the Americas. I love spending time with them.
May 16
2009. The Saturday we brought her home. They set up her bed and equipment in the middle of the living room. She was positioned for maximum visibility. Twenty people stayed in our home full-time during those days. So many more visited.
2010. Sunday, this year. Quiet.
May 17
2009. Last year, May 17, was a day of goodbyes and the Sunday Concert. So many of her friends visited that evening and sang all her requests. Everything from arias to Broadway to a simple lullaby. She asked for iced tea from Sonic and took just a few sips. That was her last truly coherent evening. The pain crisis that night was frightening.

H.B. to Me

2010-05-14T12:31:00.002-05:00

Last year on my birthday, I was in the hospital with Maura and the Houston Dynamo came to visit her. And they sang Happy Birthday to me.
Yesterday, May 13, marked the 13th anniversary of my mom's death.

Dream

2010-05-12T17:31:00.004-05:00

For years Joel has entertained me by recounting his adventure dreams to me. About five or six times a year he has the most exciting dreams, with plot lines and twists and surprises that rival, even surpass, the best action films. I have always been content to just vicariously enjoy his adventures in the morning, over coffee, safely ensconced in my kitchen, in my jammies. But this week, he has been riding on a euphoric cloud as a result of his best ever dream. And for the first time, I am jealous.
I hope I can retell it accurately.

Joel is flying (no plane...just him) above the city when he decides he wants to fly to see Maura. He begins to fly higher when he senses risk and the question coming from within asking, "Are you sure you want to do this?"
"Yes," he replies, and shoots upward.
A light appears in the distance, but grows as it quickly approaches.
Again, the question and warning from within. "Are you sure you want to do this? It's dangerous."
"Yes, I do. I want to see Maura." And he continues to climb higher. As he does, the light shines more brightly. "Was it like the sun?" I asked him. "No, it was much much brighter than the sun. I can't even describe it."
As the light sparkles more brightly, completely enveloping him, the warning comes again, even more harshly spoken. "Are you really sure you want to do this? It is dangerous and you could get hurt."
Yes, I want to see Maura!" And he feels that he is lifted, aided in some way as he continues to journey even higher.
The light is now shining so brightly that he can hardly stand it. It is different than any light he has ever seen and it draws him in like a magnet. It is glorious and powerful and wonderful.
Joel is acutely aware of the risk he is taking, and he insists that he want to continue. But in that instant, he sees that he is surrounded by angels who whisk him from the awe-inspiring light back to earth in less than the blink of an eye.
"Were you disappointed that you did not get to see Maura?"
"No," he replied, "because I know she is in that place."

OMG

2010-05-12T16:59:00.007-05:00

Today's milestone: One year ago today Sam Houston State University moved mountains to bring Maura's graduation to M.D. Anderson Cancer Center. The link to the graduation video is on the right. The best graduation ever and the only ten-minute graduation you'll ever see. Even today I am moved by the generosity of the SHSU staff, faculty, and administration who put it together and made a four-hour round trip to do this for Maura.

I truly thought that I would get to this time of year and be okay. Not "over it" because I'll never be over it, but I thought that I'd be able to get through this specific time of year, with the anniversary approaching, without being completely overwhelmed. Wrong! Uh, for the first time since returning to work in August, I arrived at the staff parking lot, and I could not pull it together. The ride to work has often been a time to cry and mourn--not recently, and never on purpose, but just because of the solitude, I guess. Yet I've always managed to compose myself, put on some makeup, and go to work. Not so today. I had to call my co-worker from the parking lot and let her know I wasn't going to be able to make it. I could not stop the tears.
Why is this time any different than the rest of the year? I know that the anniversary is approaching, but can I possibly mourn her more than I already have during these last eleven + months?

Mother's Day

2010-05-11T05:59:00.002-05:00

Nikki reminded me that Maura had taught her daughter the art of making and taking breakfast in bed for mom on Mother's Day. Just last year. Is that possible? Could it have been last year? The day that everything started to fall apart? I hadn't realized that it was Mother's Day just last year when I spoke to Dr. Benjamin on the phone. I remember that phone call clearly. I explained her symptoms. I had suspected that her kidneys had shut down. He said it could wait until the first thing the next morning (Monday) and that she did not need to go to the emergency room. The previous visit to the emergency room had not done her much good.
"Have her kidneys shut down?" I asked.
He answered in some incomprehensible and non-committal doctor speak.
"Dr. B., let me ask you another way. Her dad and sister are in New York right now. I want to know what to tell them."
"I think you should tell them to come home."

And just that morning Maura had taught Savannah how to make an omelet and the importance of breakfast in bed on Mother's Day.

This Mother's Day was a day for wallowing. Joel was at work; the girls, in New York and Australia. Yes, a perfect wallowing day--the kind of wallowing that I still need to offset the "normal " behavior I engage in most of the time. Sort of a like releasing a pressure valve.
Church mostly sucked. A woman walked up and down the aisles with tulips that she handed out to moms, and she just passed me over. Tulips to my right. tulips to my left. No tulip for me. I did not look like a mom, I guess, with no husband or children or grandchildren flanking me. I was already in full "mental wallow", so that must have shown on my face. Minutes later, she was at my side. asking if I was a mom.
"Yes." I croaked. I put on my best plastic smile.
She gave me my tulip, and I immediately felt anger. What if I had not been a mom? What if I had said no? Would she have said, "Oh," and turned on her heels and left me there, forlorn and tulipless?
I felt immediate compassion for every unwillingly childless woman. What a painful day Mother's Day must be for them.

But I came home, and there were flowers from a thoughtful friend addressed to both Joel and me, and encouraging notes from internet friends, and lots of good wishes on facebook, and phone calls from my daughters,and a visit from my niece, and skyped calls from Australia and Korea---all of which slowly prodded me out of my funk, gently pulled me from the mire.

Maybe wallowing is more like a mud bath: dirty and yucky, but it cleans out your pores.

The Back Post: Kei Kamara interview 09/17/09

2010-05-01T21:15:00.002-05:00

As I write this, the Kansas City Wizards are playing the Houston Dynamo in soccer. One of KC's best players is Kei Kamara, who played for Houston last year. He was one of the six Dynamo players who visited Maura in the hospital last year (on my birthday, just five days before she died). He blushed when Maura confessed that Kei was her favorite player. I believe he was truly touched. After that day, he wore her LiveTeal bracelet to several games. I just found these pictures and interview from shortly after being traded to the Wizards. (click on the link) He is wearing her bracelet in each shot and in the video. Actually, he is wearing the LiveTeal band in lots of the googled photos.
We had planned to go to tonight's game, but Joel wasn't feeling too well, so we skipped it. Too bad. I would have liked a chance to see him again. I wonder if he still wears Live Teal?

The Back Post: Kei Kamara interview 09/17/09

But the Greatest of These is Love...

2010-04-29T23:32:00.003-05:00

Emotions linger long after memory fades, according to a new study from the University of Iowa, whose findings were published in Proceedings of the National Academy of Sciences. "A simple visit or phone call from family members might have a lingering positive influence on a patient's happiness even though the patient may quickly forget the visit or phone call. On the other hand, routine neglect from staff at nursing homes may leave the patient feeling sad, frustrated and lonely even though the patient can't remember why."

Duh.

I could've saved the University of Iowa a lot of money.
They should've asked me, and I would've told them that love outlasts memory.
Love outlasts life.

Large sections of the Bible speak of love and its longevity. How about this favorite?

³⁸ For I am persuaded that neither death nor life, nor angels nor principalities nor powers, nor things present nor things to come, ³⁹ nor height nor depth, nor any other created thing, shall be able to separate us from the love of God which is in Christ Jesus our Lord.

Sounds pretty permanent, doesn't it? I think Sue is right when she reminds me that Maura's love still exists. It sounds almost scientific. Everything is matter and energy. Nothing disappears. It just transforms.

How about this last paragraph from The Bridge of San Luis Rey by Thornton Wilder?

" 'Even now,' she thought, 'almost no one remembers Esteban and Pepita, but myself. Camila alone remembers her Uncle Pio and her son; this woman, her mother. Bust soon we shall die and all memory of those five will have left the earth, and we ourselves shall be love for a while and forgotten. But the love will have been enough; all those impulses of love return to the love that made them. Even memory is not necessary for love. There is a land of the living and a land of the dead and the bridge is love, the only survival, the only meaning.' "

Even memory is not necessary for love.

My favorite story about my dad comes from the time he lived with us and had moderate Alzheimer's disease. As I helped him into bed one night, he started talking in his fake matter-of-fact voice--the one that he put on to try to hide the fact that he had slipped out of a world that he knew and into a world where he knew nothing.
I teased him. "You don't know who I am right now, do you?" I chided, as I tucked him in.
Busted! His eyes widened and he got that deer-in-the-headlights look. But then, surprisingly, he recovered a bit, and said gruffly, "No. But I know you're someone I love."

Perspective

2010-04-19T17:29:00.002-05:00

Eleven

2010-04-19T11:19:00.002-05:00

If Time and Grief begin to race on May 19, 2009, and Time travels at x miles per hour and Grief travels at y miles per hour, how long will it take for Grief to pass Time?

A Promise Fulfilled

2010-04-12T21:35:00.004-05:00

In the early morning hours of Monday, April 5--if you can even call 2:44a.m. "morning"--little Annive Maura was born to Scott and Amanda. Just days before her death, Maura told Amanda that Amanda's ovarian cancer would go away and that she would get pregnant and have a beautiful baby and, well, it happened, just as she said it would. Here are Mom Amanda and the miracle named Annive (pronounced ANN-ih-vee). Mom and baby are doing fine. It has been a happy week.

Time

2010-03-28T05:46:00.017-05:00

Last month I had lunch with someone I don't see often. The time before was at Maura's funeral.
"How long has it been since Maura died. Two years? Three?" she asked.
"Nine months." I said.
"No, I mean, since she died."
"Nine months. It's been just nine months."
I felt something between panic and anger.

A few weeks prior, in early February, Tim launched his album. I couldn't go to the release concert, but Kara told me that prior to his singing Starfish and Coffee, he talked about Maura, and how he had sung this song at her bedside just two days before she died about a year ago.
"What?" I think I looked astonished.
"Yes, Erin, it's coming up on a year."
Again-- panic, irritation, confusion.
"It hasn't been a year. It's not even nine months. It's still not even nine months!"

I don't want time to pass, taking me farther away from Maura, from the last time I held her. The last time she stood up--was it the night before she died? Two nights? I don't know. But she wanted to take a walk in the middle of the night. It took all my strength to lift and support her, as her arms and whole body draped around me. There were others in the room who helped lift her to me. She got to the edge of the bed, then, feet barely brushing the floor, and all her weight pressed against mine, she stood.
"Okay." she whispered.
"Did you walk enough? "
"Yes."
And I laid her back in her bed.
I will never forget that sweetest of hugs.

I often wonder if I am stuck in time, unwilling to heal or move forward. Move forward...what does that mean, anyway? My life is forever changed. I'm not moving backward. It's all just different. But Maura died at an age and a time when she was on the brink of adventure. And so were her friends. I see them moving forward in such dramatic ways, it's no wonder that nine or ten months ago seems far away to them with so much life stuffed in the cracks. Matt and Kara are teaching English in Korea. Amanda and Scott are having a baby. Mary and Sean got married and moved to Arizona. Adam is teaching and will go to grad school in Colorado. Chelsea is studying in France. David is singing opera and planning grad school. Several have begun teaching careers. Several continuing their studies around the country. I enjoy hearing about their lives. I stalk them on facebook.
I admit that I weirdly welcome the sadness, the grief, the overwhelming emotion because I can say, ah, yes, it has not been too long since she died. I held her just a little while ago. I remember her. She is remembered.
Those of us who have lost children--we want them to be remembered.
When Selena, the Tejano singer, was murdered in the mid-nineties, our household supported Danielle, a huge Selena fan, in her grief. We drove around with our headlights on. We listened to Tejano stations and Selena music non-stop. We visited Selena's boutique in San Antonio. Danielle saved Selena memorabilia of all kinds, but Danielle moved on, and the box of Selena stuff is either in the attic or has been thrown away. A year or two later, Selena's father released a new album of Selena's music: several remixes, and I think some new songs that had not been previously released. At the time I thought how sad it was. I don't believe he was trying to make a bunch of money; he just wanted his baby to be remembered, just as I want mine.
I blog because I don't want people to forget Maura. I post her videos, I want her college scholarship foundation to be realized, I secretly or not-so-secretly hope all of her friends will name their babies after her. (At least one is for sure). But time moves on, and Maura will slip away from the consciousness of most, and occupy a non-intrusive spot in that of many. What about me? Or her dad and sisters? What will grief and memory be like next year? In five? In twenty? When the girls tell their girls about Maura? What will be Maura's legacy?
Just yesterday a friend of mine commented that I look good: hair cut, a touch of make-up, shirt and jeans that fit well, a smile. "Dare I say 'happy'" she asked. Yes, I was happy. I am often happy. I am basically a very happy person, although I don't believe I'll ever again be happy without sorrow in the shadows. I know that my blog entries are often sad and grief-laden, but the blog is simply a series of snapshots in time, not my entire life. I've returned to work. I've visited with friends. We are in the process of downsizing and getting a new place. We've traveled a bit. I am planning for the future.
I suppose that is "moving forward."
And as I move farther away from when I last held her, I move closer to when I will hold her again.

Little Women

2010-03-26T09:36:00.005-05:00

After my second daughter was born, I began to develop what I call my Little Women Complex--a desire to have four girls like the ones in Louisa May Alcott's semi-autobiographical novel. After the third one, I began to wish that I had started out naming them Meg, Jo, Beth, and Amy. Although I never got that fourth daughter, I frequently commented to the girls that they were similar in birth order and personality to the Little Women brood. Danielle was Meg--the oldest, sweet and beautiful. Lydia, the next, was Jo--the writer, feisty, gangly until she grew into her height. Maura, I would say, was the perfect combination of Alcott's third sister, Beth--the peacemaker, the musician, the pet of the family--and Amy, the beautiful, the brat, the impetuous youngest sister.
"I don't want to be Beth," Maura would say, "She's the one that dies."
"That's okay," I would reassure her, "You won't be like her in that respect. You'll be like Amy, who got to travel the world."

NYC

2010-03-06T22:07:00.003-06:00

I am going to be in NYC next weekend to see a fabulous actress (the one I gave birth to) in The Seagull. Something special to look forward to.

Dear Maura,

2010-02-19T22:12:00.003-06:00

Nine months. Last couple of days have been a roller-coaster. I spent two days up at SHSU for a conference. Driving up there, I felt my heart beat faster, I started crying, and had, well, sort of a panic attack, I guess. Just a little one. I didn't have to pull over, although I probably should have, now that I think about it.
After I arrived at Sam, and as soon as I had time, I walked to the Music Building to find your diploma, which I'd been told was hanging on a wall. Just walking through the halls brought so much emotion to the surface, knowing you had walked there, sung there, studied there, had laughed and played hide-and-seek there and had such a fun time at your home away from home.
My friend and I wandered through the hallways, looking. I stopped a couple of people that looked like they might know. They didn't. I spoke to Mr. Michel. He didn't recognize me at first. Why should he? But he took me to find Dr. Hightower, who immediately invited us in to listen to the Chorale as they rehearsed. Oh my gosh--such beautiful music! Dr. H is still as fun to watch as ever! Did you know that they sang for you at TMEA last week? Yes, they dedicated their concert to you, and Mrs. Eaton spoke about you during her introduction of the Sam Chorale. You are still missed. You have inspired many. Anyway, at the Chorale rehearsal I saw several of your friends. Isn't it funny that most of your girl friends have graduated but a lot of your guy friends have not?
I thought I'd also say Hello and Thank you to Dr. Bankhead, but I chickened out. Besides, I had to get back to the conference.
At my next break, I headed to the Registrar's Office--the actual location of the memorial,as it turns out, not the Music Building. On the third floor, someone asked if she could help me. "Yes," I answered, trying desperately, if unsuccessfully, to look normal and nonchalant, "I'm looking for a memorial to a former student. I heard that it was located here." She pointed to the wall on my right. There it was. A shadow box with a copy of your diploma, an honor cord, a graduation tassel, some identifying papers, and a beautiful picture of you in your black and flowered sundress on a swing at the park. I could no longer hold the tears back, and I only vaguely cared that I was in full view of a slew of employees in the Registrar's Office. I heard whispering. Then, one kind woman came up to me. She spoke well of you, even though she had not met you, I think. She spoke of the day the entire office took turns watching your graduation video. She told me they were all moved to tears...and she was crying, too, as she told me the story.
Kevin had dinner with me at Fat Boys. The food was delicious but I could feel my arteries clogging after eating that hamburger! He is such a neat kid. I mean, he's not a kid, I know. If I said he was a "nice young man," it would be true, but you'd laugh at me and say I sounded old.
This morning, back at the conference, one of the presenters was the Dean of the College of Arts and Sciences. I remembered that Nicole had talked about him during that whirlwind day of graduation planning. As he exited toward the elevator, I caught up with him to meet him and thank him for the role he played in bringing the graduation at the hospital to fruition. I didn't have to finish my sentence. He took one look at my name tag and figured out who I was. He said wonderful things about you, and about how you were light and inspiration to so many, and he told me twice how glad he was to meet me. I feel like he meant it. And I was glad to have the chance to thank him.
So I raced home after the conference because Daddy and I went to close on the apartment. I placed a picture of you on the apartment refrigerator this evening. It's the only thing in the apartment right now. The refrigerator magnet I used is one that Marcy brought me from Jerusalem. It's a sculpture of the Western Wall (the Wailing Wall). The day that you died, Marcy placed a prayer for you in the Western Wall. She didn't find out until later that night that you had died.
Miss you so much, sweet baby girl.

My Heart Sings

2010-02-17T22:56:00.003-06:00

I did a good thing today.
I attend a grief support group at work. One of the women had lamented not feeling able to mourn the loss of her sister last year due to, well, lots of things, including the absence of any obituary. So we had D___ Day today. The sister and I had emailed earlier in the week so I could get enough information to put together what turned out to be a two-page obit, more of a eulogy, I think. I brought samples of things D____ loved: lyrics to Cat Stevens' songs, synopses of her favorite movies, internet images of her favorite artists. Someone brought D____'s favorite books from the library, and another person brought a blanket to be monogrammed with the sisters' names. Someone brought a cake, and another brought her a statue of two girls playing together, with a saying about sisters and guardian angels. She, herself, brought beautiful pictures of the two of them as children, and several of D___ by herself. When I read the eulogy, my friend cried. When I got to the part where I mentioned D___'s favorite TV shows included Damages, I pulled out my secret weapon: an email I received just this morning from one of the cast members of Damages, Marlyne Afflack, who had a small recurring role in Season 1 of Damages. She expressed her condolences to the sister and assured her that she was praying for her. My friend cried harder. It was actually quite a beautiful moment.

I think I helped her a little bit. But I know I helped myself even more.

God gave me a wonderful opportunity to do something for another person...and I snatched it up and ran with it. Thank you, God, for giving me a moment to take my eyes off my own sorrow and focus on the needs of another.

I did a good thing.

My Funny Valentine

2010-02-14T10:23:00.001-06:00

On this day last year, Maura and BFF Katie prepared dinner for both sets of parents at our house. In true Maura/Katie style, they turned the evening into An Event-- a cooking show, complete with aprons, chef's hats, flair,and sketchy Italian accents. For a "commercial break" they performed the flower duet, Dome Epais, from Lakme, which they had sung together in a high school choir concert, and then went back to cooking our feast of chicken and pasta...it had an Italian name, but i can't remember it. I just remember Maura.
How sweet that on her last Valentine's Day, Maura made us her Valentine.

Frida

2010-02-01T23:33:00.004-06:00

I never cared much for Frida Kahlo paintings. Never really enjoyed them much. But this one comes to mind frequently these days. I think it was meant to express some of her grief over the philandering Diego Rivera. But for me, it's that Maura-shaped hole in my heart.

Winter

2010-02-01T23:01:00.002-06:00

Lots of literature pairing winter and grief
Here's a piece of a poem from a book called Medieval English Verse:

Winter rouses all my grief.
Branches strip til they are bare,
And sighing in sorrow, I despair
That earthly pleasures come to nothing.

Fleeting joys, now here, now gone!
True it is, as many say,
Except God's will, all fades away.
Willy-nilly, we shall all die.

Gotta hand it to those medieval Brits. Love that last line. Can you believe that they were saying willy-nilly way back in medieval times?

And then there is this paragraph from the foreword of Winter Grief, Summer Grace by James E. Miller (the title is longer but I can't remember it at the moment.)
A few generations ago, a book like this would have been unnecessary--unthinkable in fact. People knew about grieving because it was a natural part of life. It was both understandable and understood. People of all ages lived with it and honored it. But ours is a different time. And because so many of us are ill-informed about and ill at ease with dying and death and grief, your task is even more difficult.

You can say that again! Oh, to be in a culture that could understand and honor my forgetfulness, my lack of focus, my micro cries, my outbursts, my anything having to do with missing Maura. How I wish I could just wear a color or a garment or something so people would know and I wouldn't have to feel awkward or embarrassed or explain myself or apologize! Why do I apologize? That's just ridiculous.

Eight

2010-01-19T16:35:00.001-06:00

Eight months. Seems like eight days.

Stories

2010-01-18T20:39:00.002-06:00

I love, love, love hearing stories about Maura. I love the little glimpses into pieces of her life that I did not personally witness. I love hearing how she affected others. In the past couple of weeks I have heard from someone who made her chili for a cook-off and took second place. I heard from the lead singer/guitarrist of a local band who, one night last year, jumped off the stage to dance with Maura, leaving his band to finish the song alone. I heard about her songs and laughter and smile.

All the stories make me happy.

Danielle

2010-01-10T20:41:00.002-06:00

I miss her already.

She is on her way to Australia to study music.
Just for a year. Probably.
Studying at Hillsong is the first thing since Maura's death to make her happy. She's nervous and worried, but excited. And happy. -ish. Everything is -ish for all of us.

I spoke with a friend of mine who very recently lost her husband to cancer. "Will I ever feel joy again?" she asked me, somewhat rhetorically.
Yes, I told her. It's still raw and it doesn't feel like it did before, but it is unmistakably joy. Maybe just a sliver.
I told Card Blue the same thing because he was so worried about his wife and kids. I think it might have helped him a little bit. He said it did.
Not that I'm all happy and bubbly like before because I'm not. But maybe some day...

So, it's wonderful to see Danielle pursuing something she loves, something that gives her a modicum of joy. It won't make the pain go away for her, but it seems like it must be a start.

But I worry.

Why do my daughters insist on making major changes in their lives when all the wisdom and all the advice and the books say not to make any major changes for at least a year?

I miss Danielle and Lydia and Maura. When Dani disappeared through the security checkpoint at the airport, I broke down just a smidge. But then I remembered it was only for a year. Eleven months, actually.
Not the rest of my life.
It was a strangely cheering thought.

New Year

2009-12-31T23:14:00.007-06:00

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

2009-12-25T06:21:00.002-06:00

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

2009-12-24T19:11:00.003-06:00

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

2009-12-20T21:44:00.002-06:00

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

2009-12-19T17:42:00.004-06:00

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

2009-12-19T17:07:00.003-06:00

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

2009-12-19T16:37:00.002-06:00

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

2009-11-25T23:56:00.003-06:00

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

2009-11-23T09:43:00.012-06:00

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

2009-11-19T23:42:00.002-06:00

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

2009-11-15T20:52:00.009-06:00

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...

2009-11-09T00:39:00.003-06:00

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

2009-11-08T23:29:00.006-06:00

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

2009-11-01T07:29:00.002-06:00

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

2009-10-24T20:34:00.002-05:00

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

2009-10-23T18:25:00.004-05:00

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

2009-10-19T23:33:00.005-05:00

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

2009-10-08T22:11:00.002-05:00

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

2009-09-28T22:07:00.003-05:00

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

2009-09-26T17:02:00.004-05:00

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

2009-09-26T13:40:00.004-05:00

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?

2009-09-23T22:44:00.004-05:00

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

2009-09-20T15:38:00.003-05:00

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

2009-09-18T16:41:00.003-05:00

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

2009-09-15T00:12:00.003-05:00

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

2009-09-13T11:01:00.002-05:00

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

2009-09-10T18:45:00.002-05:00

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

2009-09-10T17:10:00.002-05:00

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

2009-09-09T16:28:00.002-05:00

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

2009-09-06T09:37:00.004-05:00

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

2009-09-02T21:00:00.005-05:00

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.

2009-08-30T13:54:00.002-05:00

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

2009-08-29T11:02:00.004-05:00

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

2009-08-28T21:30:00.003-05:00

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

2009-08-23T20:10:00.002-05:00

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

2009-08-22T05:49:00.003-05:00

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.

2009-08-21T19:02:00.003-05:00

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

2009-08-18T22:04:00.006-05:00

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

2009-08-11T21:19:00.002-05:00

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

2009-08-06T22:23:00.002-05:00

More You CAN Say

2009-08-01T19:05:00.002-05:00

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

2009-07-31T17:04:00.003-05:00

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

2009-07-30T18:28:00.005-05:00

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

2009-07-17T08:27:00.004-05:00

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

2009-07-15T20:42:00.000-05:00

Sorry about that last post. I was just venting.

"New Normal"

2009-07-15T19:43:00.002-05:00

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

Mr. Hemingway

2009-07-12T00:08:00.002-05:00

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!