Dear Friend,

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

May God comfort her family and friends.

Toi noi tieng Viet khong gioi

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

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

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

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

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

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

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

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

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

Race Pics

Race

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

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

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

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

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!)

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

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!!

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.