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.
Friday, May 20, 2011
Wednesday, May 18, 2011
Week
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
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
Monday, May 2, 2011
Sue
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.
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.
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!
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