It was pretty cool.
Saturday, April 16, 2011
Teal Out
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.
It was pretty cool.
Friday, April 15, 2011
Proton Therapy
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.
Tuesday, March 22, 2011
Rest in Peace, Elsa Dias
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.
Sarcoma has killed one more bright, beautiful person.
Friday, February 11, 2011
WWMD
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.
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.
Thursday, February 3, 2011
Faith
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
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
Saturday, January 29, 2011
Marine
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.
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.
Thursday, January 27, 2011
Blue
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.
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.
Friday, January 14, 2011
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.
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.
Tuesday, December 7, 2010
Saturday, December 4, 2010
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!
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!
Friday, December 3, 2010
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.
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.
Friday, November 19, 2010
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.
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.
Wednesday, November 10, 2010
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.
My thoughts are also with Chris, who lost her sweet daughter,Jillian, not two months ago. Chris, I share this with you.
Sunday, November 7, 2010
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:
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:
Sunday, October 17, 2010
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.
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.
Sunday, October 10, 2010
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.
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.
Saturday, October 9, 2010
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!
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!
Sunday, October 3, 2010
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!
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!
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