The past few months, fear has crept into my life, my home, my family.... And, I'm ashamed to say I ran and hid under the bed and let it in. The only problem about hiding under the bed is that it is dark under there... My view is limited under the bed. I look out and see feet. I also see lots of dust bunnies.
But, yesterday, I remembered I have a flashlight. I've always had a flashlight. So, I flipped it on and crawled out from under the bed.
Right now, CF, transplant rejection and infection are looming large. I'm scared. I don't want to lose my child. I have never wanted to lose my child. However, what I forgot is to value her now. No matter the complication, shine the light on it and find God. He is ever present, all loving and good all the time. Friends and family fully demonstrate His Omnipotence in our lives.
Tuesday, November 25, 2014
Thursday, September 11, 2014
Over Protection
When the girls were little I made sure we didn't really interact with other CF families. I attended a couple of support group meetings in Virginia, but quickly decided that it wasn't for me... And, in making that decision, I decided it wasn't for us.
There was the mom, Jennifer, who had two beautiful little boys with CF. Her boys were in and out of the hospital, and she seemed to be that special kind of crazy reserved only for the mom of two children with CF. We were friendly for about a year. The thing I noticed was that she was SUPER focused on fundraising, which caused her to be SUPER focused on the disease and the tragedy of it all.
Then I met another lady in CF clinic. Danielle was two, and I was pregnant with Sarah. As we were talking, she berated me for being pregnant with another child who would be born with CF, and said (in front of her sweet daughter), "If you had been through what I had been through, you would never even consider having another child with Cystic Fibrosis."
I always wanted the girls to focus on the healing power of Spirit, and living the fullest life they could. In the girls' cumulative records through school rested a letter that said, "We live with CF, not for it."
My strength and emotional support came from other sources, and right, wrong or indifferently, I judged CF families as generally crazy and disease-focused and not the type of people I wanted to associate with regularly. I also wanted to save the girls from the pain of losing friends to the disease when we were struggling to put one foot in front of the other and live each day. Plus, when the girls entered elementary school, research determined that cross contamination between CF patients was seriously risky business. It was not encouraged, and in certain instances it was outright discouraged. Many CFers had to begin adhering to the 6-foot rule. (I wouldn't touch him with a 6-foot pole.)
However, as the years rolled along and the hospitalizations became more frequent, I sought solace, support, information, understanding from the Internet. And, in my searching, I found an amazing community. I became friends with a beautiful young lady named Lauren. She was incredibly faithful in her beliefs and did so much for the CF community. Lauren died at the age of 28. But, she gave me hope that my girls could go to school, work, get married and live life. Her life was a gift to me.
Blogging introduced me to Ronnie Sharpe who writes "Run, Sick Boy, Run". Ronnie established Cystic Life, which allows people connect and share information. I also connected with Piper Beatty who writes "A Matter of Life and Breath". Piper shared her transplant journey through not just one, but two double lung transplants. She is a brilliant writer and maintains an incredibly upbeat perspective no matter what is happening in her life..
Now the girls are older, and they make their own decisions about friendships and what types of support nurture them emotionally and spiritually. And, the Internet has opened up a world of connection that wasn't possible when I was struggling with my insecurities as a young mom of two children with significant health concerns.
The girls have chosen connection. And, with that connection has come the experience of saying good-bye to friends they have grown to love. It hurts, and it is scary. It is terrifying to watch friends die when you share the diagnosis. My idea about protecting the girls from the harsh reality of CF had merit. I was attempting to mentally stave off the scary, overwhelming reality of the disease: surgeries, oxygen, diabetes, lung transplant, coughing up blood, coughing up stuff thicker than blood, stroke, heart attack, depression, colon rupture, pain... I could go on. There is more, and there is probably even stuff I don't know lurking around the reality of what CF is... What CF does...
I need to say, though, I was wrong. I was wrong about thinking I could, or even that I should, try to protect my girls from the CF community. Yes, we have our share of crazy. (In fact, we qualify as some of the craziest...) But, my girls have become some of the most amazing, inspirational young women I know. And, they have developed relationships with some incredible people who are bigger than their disease. People who live happily, passionately, hopefully... People who humble me and help me to know that life is to be lived... BIG-LY. People who live with great love despite the challenges.
There was the mom, Jennifer, who had two beautiful little boys with CF. Her boys were in and out of the hospital, and she seemed to be that special kind of crazy reserved only for the mom of two children with CF. We were friendly for about a year. The thing I noticed was that she was SUPER focused on fundraising, which caused her to be SUPER focused on the disease and the tragedy of it all.
Then I met another lady in CF clinic. Danielle was two, and I was pregnant with Sarah. As we were talking, she berated me for being pregnant with another child who would be born with CF, and said (in front of her sweet daughter), "If you had been through what I had been through, you would never even consider having another child with Cystic Fibrosis."
I always wanted the girls to focus on the healing power of Spirit, and living the fullest life they could. In the girls' cumulative records through school rested a letter that said, "We live with CF, not for it."
My strength and emotional support came from other sources, and right, wrong or indifferently, I judged CF families as generally crazy and disease-focused and not the type of people I wanted to associate with regularly. I also wanted to save the girls from the pain of losing friends to the disease when we were struggling to put one foot in front of the other and live each day. Plus, when the girls entered elementary school, research determined that cross contamination between CF patients was seriously risky business. It was not encouraged, and in certain instances it was outright discouraged. Many CFers had to begin adhering to the 6-foot rule. (I wouldn't touch him with a 6-foot pole.)
However, as the years rolled along and the hospitalizations became more frequent, I sought solace, support, information, understanding from the Internet. And, in my searching, I found an amazing community. I became friends with a beautiful young lady named Lauren. She was incredibly faithful in her beliefs and did so much for the CF community. Lauren died at the age of 28. But, she gave me hope that my girls could go to school, work, get married and live life. Her life was a gift to me.
Blogging introduced me to Ronnie Sharpe who writes "Run, Sick Boy, Run". Ronnie established Cystic Life, which allows people connect and share information. I also connected with Piper Beatty who writes "A Matter of Life and Breath". Piper shared her transplant journey through not just one, but two double lung transplants. She is a brilliant writer and maintains an incredibly upbeat perspective no matter what is happening in her life..
Now the girls are older, and they make their own decisions about friendships and what types of support nurture them emotionally and spiritually. And, the Internet has opened up a world of connection that wasn't possible when I was struggling with my insecurities as a young mom of two children with significant health concerns.
The girls have chosen connection. And, with that connection has come the experience of saying good-bye to friends they have grown to love. It hurts, and it is scary. It is terrifying to watch friends die when you share the diagnosis. My idea about protecting the girls from the harsh reality of CF had merit. I was attempting to mentally stave off the scary, overwhelming reality of the disease: surgeries, oxygen, diabetes, lung transplant, coughing up blood, coughing up stuff thicker than blood, stroke, heart attack, depression, colon rupture, pain... I could go on. There is more, and there is probably even stuff I don't know lurking around the reality of what CF is... What CF does...
I need to say, though, I was wrong. I was wrong about thinking I could, or even that I should, try to protect my girls from the CF community. Yes, we have our share of crazy. (In fact, we qualify as some of the craziest...) But, my girls have become some of the most amazing, inspirational young women I know. And, they have developed relationships with some incredible people who are bigger than their disease. People who live happily, passionately, hopefully... People who humble me and help me to know that life is to be lived... BIG-LY. People who live with great love despite the challenges.
Monday, July 28, 2014
Lesson Learned
It's easy for me to love children. Irascible, angry little people are my specialty. I can talk to them, discovering hidden reasons for the most abhorrent behavior. Usually, it boils down to fear. When kids are afraid, they react angrily. My mom likes to call anger "fear with teeth in it". When I'm talking to a child, it's easy to uncover the fear so we can walk hand in hand toward a solution.
It's more difficult to love adults who present themselves in an angry fashion. However, I have found that I even have a knack of diffusing angry adults by listening and understanding. Most people get ensnared in a fit of anger when really they are scared or are not getting their needs met in some way. Some angry adults even stoop to berating and threatening when they are afraid.
And, that's where I go haywire. Angry people with a little bit of power bring out this deep seated characteristic in me to defend. Underdog was my favorite cartoon character as a kid. He rose from his humble station as Shoeshine Boy to defend sweet Polly Purebred from the evil deeds of villains like Simon Bar Sinister and Riff Raff. But, in real life, roles are not so clear cut. The good guys aren't always so clearly good, and the bad guys are not so solidly bad. Lines get blurred and my inner bubbling defender is left simply feeling rotten... Boiling helplessly and rolling words around in my head wondering if I should have stood up and said something.
My Ah-Ha moment came today when I realized that I am called to love. I need to love the angry, fit-throwing child, and I need to love the blustery, demanding adult. I don't have to tolerate abuse, but I can love. There is serious power in loving all people, even if I don't agree with their words, ideas or methods. If I can wrap my brain around that concept, I can tuck away my Underdog cape and serve others in the role of Shoeshine Boy, accepting what comes and rising to what can be.
Sunday, September 22, 2013
Common Core, Accountability and M&M's
This morning, I watched Dr. Megan Koschnick talk about the developmentally inappropriateness of Common Core State Standards. Click here to watch the video. The video is published on a website entitled, "Truth in American Education". If you are interested, you can delve into the political, behind-the-scenes motivations and commentary. I will leave you to search the site and draw your own conclusions. But, politics aside, Dr. Koschnick makes some very valid points.
I'd like to cite my personal, education and professional experience here, just to offer a reference for my perspective (And, if there is some philanthropist out there who takes note of my brief resume and thinks to herself, "Hmmm... I would love to pay this lady to wax educational philosophy all day!" then, so be it.):
First, I was heartened by Common Core when it first came on the scene, because I am from Mississippi. While the rest of the nation is rallying against Common Core as a violation of state's rights, I am looking at Mississippi's need to do something, anything, the rest of the nation is doing. Mississippi is plagued with poverty that stems from ignorance and illiteracy. We cannot continue to do our own thing and expect to make marked change for our citizens.
However, I was conflicted when I actually looked at the Standards. Like Dr. Koschnick, I had grave concerns about the developmental appropriateness of the Common Core. Drawing on my pre-school teaching experience and my knowledge of special education, I did not see success on the horizon for many of our children. Failure to measure up... That's what an initial review of Common Core brought to mind. And, of course, that sparked that empathetic part of me who knows what it is like to be a little girl, with an alcoholic dad, who never measured up at home... School was the one place I excelled. My educational experiences helped stoke a sense of accomplishment and self-esteem. What will happen to the children who don't measure up at home or at school? Like the directions on the shampoo bottle, "Wash, rinse, repeat." We are destined to create a negative cycle for those children.
Currently, "accountability" is where it's at in education. Why? Money. Plain and simple. And, I know for a fact that "the test" is not an accurate measure of achievement for many children. But, we use it... We crunch numbers... We look at the data. Because it is all we have as a quantitative measure for the qualitative process of building living, breathing, feeling, thinking human beings. However, if you are sitting in your living room looking at school ratings in the newspaper, or even if you are a teacher who is looking at the test and determining that Susie has no idea how to determine the main idea of a passage, I can tell you that the data doesn't tell the whole story. The man reading his newspaper and seeing the report of a school rated 'D' doesn't know how many students with special education needs are served in that school... He doesn't know how many children in the school don't speak a word of English. He doesn't know how many children came to school to take that test after having stayed up half the night listening to parents fight in drunken rages. The teacher analyzing testing data knows. And, she knows that Susie didn't take her medication to treat diagnosed AD/HD that morning. She also knows that Susie didn't read one word on the test anyway, making the data null and void in and of itself because anything correct was a guess. But, it doesn't matter what the teacher knows or doesn't know because her principal's job is to hold her accountable for the performance of her students... No excuses. (And, stop your annoying whining.)
All of the above considerations bring me back to my thoughts on the video. In a nutshell, I have no problem with any curriculum we set forth. There are problems with Common Core, but there were problems with our other state developed curriculum too. What I have a problem with is the expectation that all students will master the standards at a certain level. Cite Piaget all you want... The fact is I have a real 5-year-old sitting beside me that has already mastered the majority of the Standards outlined in the Common Core. She reads, she writes, she does math calculations and solves complex math problems... Speaking and listening? Come over and talk to her. I have children in my school who are much like Micah. They can rock through Common Core with no problem... Developmentally appropriate or not.
That brings me to research. The people who are coming out against Common Core are primarily referencing developmental studies that are out-of-date. Thank God researchers in the field of cystic fibrosis and transplant aren't taking this same approach. Brain research has come a long way since Piaget and pals. Dr. Koschnick states that we do not want to use our children as research subjects, but I beg to differ. If Sarah, Dan and other CF patients didn't step up to the plate to help with research, we would still be in the dark ages. Danielle gave permission for research within her transplant process, as well. That's how progress is made. That is how we move forward and continue to become the best we can be. Research and trial and error is the reason Danielle is currently alive today.
The truth is that we are looking for simple formulas for complex problems. And, in some cases, we have come up with complex formulas for simple problems. We have thrown out common sense and human compassion in pursuit of College and Career Readiness. Answers? I don't have any. But, I do have m&m's.
I recently had a little boy brought into my office during the pilot Common Core pre-assessment. His 6-year-old eyes took one look at that test and said, "No thanks. I choose to roll around on the floor." So, I took off my principal hat and put on my mom hat just for a moment. I put my arm around him, spoke kindly to him and gave him three m&m's to recharge so he could go in there and finish coloring in bubbles. We are going to crunch his data right along with the other 20 children in the class, but we won't account for the m&m variable.
Thus, I'm left to draw the same conclusion I drew after the inception of No Child Left Behind. It isn't the curriculum that is the problem. It is the obsession with testing and accountability. It is the ridiculous premise that every student is going to fully master any curriculum. And, it is the nonsensical legislation that ties funding to test scores. That is the real problem. Only after we as a public become outraged that legislators, with no background in education, are determining how our tax dollars are spent at the expense of our children, will change come about. What would happen if every parent chose to keep their child out of school during testing? Currently 95% of students must be tested in order to get the $$$. That's our law here in MS, anyway, and I imagine there are similar laws in other states. We must tell the lawmakers we are sick of testing our kids to death... Having a 6-year-old take a 3 hour test does not make sense to any sane person who has ever met a 6-year-old. Talk about developmentally inappropriate practice!? That is it!
I'd like to cite my personal, education and professional experience here, just to offer a reference for my perspective (And, if there is some philanthropist out there who takes note of my brief resume and thinks to herself, "Hmmm... I would love to pay this lady to wax educational philosophy all day!" then, so be it.):
- My mom is a special education teacher at the youth court. She has the children who are incarcerated... The children society has locked up.
- My mom owned a child care center when I was a child.
- Mom has a B.S. degree in Special Education and an M.S. in Counseling.
- I taught private pre-school for 11 years prior to moving into public education.
- I have an A.S. degree in Education.
- I have a B.S. degree in Human Services Counseling.
- I have an M.S. degree in Elementary Education, with an endorsement in Special Education.
- I taught special education in a variety of settings for 12 years. I also served as Local Survey Chairman.
- I attended a program to obtain an alternate route license in Educational Administration.
- I am married to a Naval Academy graduate who sports a degree in Statistics. He has a M.S. Degree in Educational Administration. He is currently pursuing a Doctorate in Educational Administration.
- I have three daughters, ages 21, 18 and 5. (Yes, 5...)
- My two older daughters have cystic fibrosis, and my eldest daughter had a double lung transplant almost 2 years ago.
- My middle daughter is a college freshman and is currently participating in a research drug study. Both girls have participated in multiple drug studies to further research for CF.
- I have great experience with alcoholism and addiction, and family dynamics and recovery.
- As a result, I have a close, personal relationship with God, meditate regularly and explore spirituality, which has led me to teach children Yoga and meditation practice.
- I'm from Gautier, Mississippi. I moved away when I was in the 3rd grade, lived in Florida and Virginia, and came back here when I was 30 years old.
First, I was heartened by Common Core when it first came on the scene, because I am from Mississippi. While the rest of the nation is rallying against Common Core as a violation of state's rights, I am looking at Mississippi's need to do something, anything, the rest of the nation is doing. Mississippi is plagued with poverty that stems from ignorance and illiteracy. We cannot continue to do our own thing and expect to make marked change for our citizens.
However, I was conflicted when I actually looked at the Standards. Like Dr. Koschnick, I had grave concerns about the developmental appropriateness of the Common Core. Drawing on my pre-school teaching experience and my knowledge of special education, I did not see success on the horizon for many of our children. Failure to measure up... That's what an initial review of Common Core brought to mind. And, of course, that sparked that empathetic part of me who knows what it is like to be a little girl, with an alcoholic dad, who never measured up at home... School was the one place I excelled. My educational experiences helped stoke a sense of accomplishment and self-esteem. What will happen to the children who don't measure up at home or at school? Like the directions on the shampoo bottle, "Wash, rinse, repeat." We are destined to create a negative cycle for those children.
Currently, "accountability" is where it's at in education. Why? Money. Plain and simple. And, I know for a fact that "the test" is not an accurate measure of achievement for many children. But, we use it... We crunch numbers... We look at the data. Because it is all we have as a quantitative measure for the qualitative process of building living, breathing, feeling, thinking human beings. However, if you are sitting in your living room looking at school ratings in the newspaper, or even if you are a teacher who is looking at the test and determining that Susie has no idea how to determine the main idea of a passage, I can tell you that the data doesn't tell the whole story. The man reading his newspaper and seeing the report of a school rated 'D' doesn't know how many students with special education needs are served in that school... He doesn't know how many children in the school don't speak a word of English. He doesn't know how many children came to school to take that test after having stayed up half the night listening to parents fight in drunken rages. The teacher analyzing testing data knows. And, she knows that Susie didn't take her medication to treat diagnosed AD/HD that morning. She also knows that Susie didn't read one word on the test anyway, making the data null and void in and of itself because anything correct was a guess. But, it doesn't matter what the teacher knows or doesn't know because her principal's job is to hold her accountable for the performance of her students... No excuses. (And, stop your annoying whining.)
All of the above considerations bring me back to my thoughts on the video. In a nutshell, I have no problem with any curriculum we set forth. There are problems with Common Core, but there were problems with our other state developed curriculum too. What I have a problem with is the expectation that all students will master the standards at a certain level. Cite Piaget all you want... The fact is I have a real 5-year-old sitting beside me that has already mastered the majority of the Standards outlined in the Common Core. She reads, she writes, she does math calculations and solves complex math problems... Speaking and listening? Come over and talk to her. I have children in my school who are much like Micah. They can rock through Common Core with no problem... Developmentally appropriate or not.
That brings me to research. The people who are coming out against Common Core are primarily referencing developmental studies that are out-of-date. Thank God researchers in the field of cystic fibrosis and transplant aren't taking this same approach. Brain research has come a long way since Piaget and pals. Dr. Koschnick states that we do not want to use our children as research subjects, but I beg to differ. If Sarah, Dan and other CF patients didn't step up to the plate to help with research, we would still be in the dark ages. Danielle gave permission for research within her transplant process, as well. That's how progress is made. That is how we move forward and continue to become the best we can be. Research and trial and error is the reason Danielle is currently alive today.
The truth is that we are looking for simple formulas for complex problems. And, in some cases, we have come up with complex formulas for simple problems. We have thrown out common sense and human compassion in pursuit of College and Career Readiness. Answers? I don't have any. But, I do have m&m's.
I recently had a little boy brought into my office during the pilot Common Core pre-assessment. His 6-year-old eyes took one look at that test and said, "No thanks. I choose to roll around on the floor." So, I took off my principal hat and put on my mom hat just for a moment. I put my arm around him, spoke kindly to him and gave him three m&m's to recharge so he could go in there and finish coloring in bubbles. We are going to crunch his data right along with the other 20 children in the class, but we won't account for the m&m variable.
Thus, I'm left to draw the same conclusion I drew after the inception of No Child Left Behind. It isn't the curriculum that is the problem. It is the obsession with testing and accountability. It is the ridiculous premise that every student is going to fully master any curriculum. And, it is the nonsensical legislation that ties funding to test scores. That is the real problem. Only after we as a public become outraged that legislators, with no background in education, are determining how our tax dollars are spent at the expense of our children, will change come about. What would happen if every parent chose to keep their child out of school during testing? Currently 95% of students must be tested in order to get the $$$. That's our law here in MS, anyway, and I imagine there are similar laws in other states. We must tell the lawmakers we are sick of testing our kids to death... Having a 6-year-old take a 3 hour test does not make sense to any sane person who has ever met a 6-year-old. Talk about developmentally inappropriate practice!? That is it!
Saturday, May 04, 2013
Ghosts
Do you believe in ghosts? The question was recently asked of me, and while I wondered how anyone could even ask such a question... Ahem. Haven't you seen "Ghost Hunters"? I don't just "believe" in ghosts. I have experienced ghosts. And, when I say 'experienced', I mean spirits from beyond have interacted with me in ways that have scared me, comforted me, or freaked me out entirely. I don't walk around like the kid on The Sixth Sense or anything, but I have a certainty that ghosts exist.
Now that brings into question one's spiritual and religious convictions about the afterlife. Really, I have no idea how ghosts fit into any of the proposals about what happens to us when we die. There are lots of things I don't understand, but I'm open to experiencing the unknown.
In thinking about ghosts, though, I realized that we all experience ghosts every day. I am fortunate to the live on the same street where I lived as a little girl. The other day, as I strolled down the street so Micah could play with my childhood friend's little girl, ghosts whirled around us dancing down the street. I saw that young, innocent wide-eyed shadow of myself sneaking down the road with my tow-headed little brother to check out the fish camp we deemed "haunted". I watched as we stopped to pick honey suckles alongside my own beautiful little blond Micah. Those children are gone, but their ghosts remain here, and they come when I least expect it sometimes.
The other night, a torrential rainstorm brought water back into my home, and I experienced the ghost of my husband's former self. He came to me in panic and uncertainty about what to do. And, I remembered Katrina and coming home after the storm. I looked around as the water creeped across the floor and saw the look on Dan and Sarah's faces after we returned to our home turning upside down. Their ghostly little eyes searching mine for assurance that everything would be alright...
Today, Tiffany is getting married. Tiffany. The good hearted little girl that kept Dan on the straight and narrow during middle school band camp is getting married. Trick-or-treating. Movies. Slumber parties. The ghosts of those little girls have floated around me on the days leading up to this day. And, I am certain that today, when she walks down the aisle, with Dan as her maid of honor, the ghosts will be there beside me, holding my hand, comforting me as they move into adulthood.
Ghosts are real. I have no doubt.
Sunday, April 14, 2013
Pi
First, the problem started with Cableone. Cableone is my e-mail and Internet provider. And, Cableone somehow partnered up with Google last year, so now my Cableone account looks startlingly similar to my Gmail account.
That leads me to problem two. I have too many e-mail accounts. When I started with e-mail back in the 90's, I had one account. I used it for everything. And, sweetly it was tied to my mom's childhood name for me. Then work got in on the action, and it was all downhill from there. Now I have an e-mail account for work, an e-mail account for freelance writing, an e-mail account tied to my educational website and an e-mail account for shopping... It's ridiculous. Facebook even issues you an e-mail specifically for that site.
And, this of course leads to problem three. I have TOO MANY PASSWORDS. I have so many passwords that I have to have a password keeper to keep them all. I have a basic personal password, a basic work password, a basic freelancing password, etc. But, website administrator tech dorks, in their quest to "help" me, have started requiring that I add a number or a character to make it more secure. Well, thankyouverymuch, it is all so darned secure that I can't access it.
So, finally today, going round and round in circles all morning, I finally figured out how to access my blog again. I couldn't change the crazy temporary e-mail account Blogspot assigned it when Cableone switched over to Gmail, but I gave my other accounts access to be authors.
Maybe later I will write about the romance of spirituality of Pi, but I can't manage it today since I was trapped in the mire of the technology of it.
Namaste',
Christy
Wednesday, November 21, 2012
Grateful
As Thanksgiving approaches, I find myself feeling so incredibly grateful for my life and all the wonders inherent within it. 2012 has been a miraculous year. It is amazing to think that last November, I was preparing for the close of my child's life. I was ever hopeful that she would get "the call", but having waited over a year and a half at that point, it was not certain. Now, ten months later, every day is a day to embrace life.
My life has changed me. I have garnered a deep acceptance for the realities of life and have learned to adapt to meet all the challenges life offers. I have also developed a zest for life, realizing that it can all be over in the blink of an eye.
I have released many fears. After living with chronic, life-threatening illness daily and looking death squarely in the eye, I have found that not much scares me. Ultimately, everything will always be alright. That is how the Universe is designed. It may not be the way I want it, but it will be the way it is supposed to be.
Love looks different in my life today. Once upon a time, love meant hovering over my children and ensuring they had everything they need and did everything they were supposed to do. Today, I am finding love means letting go, allowing for greater responsibility and believing they can handle it.
Creativity abounds today. And, for that I am extremely grateful. I have been offered opportunities to write in a variety of genres and explore other creative outlets. Walking around with the heart of an artist adds an element of magic to each and every day.
Friendships and relationships have grown and changed. I have always known that people come in and out of my life as God would have them. Opening myself to new friendships and adapting to changes in old friendships has added a richness to my life. Family bonds have strengthened in some areas and broken in others, leaving me feeling grateful.
Thanksgiving requires that I truly reflect upon all the things for which I am grateful. Thus, it is with a grateful heart that I move forward today. It is with grateful eyes that I view the day and all that I have been given.
My life has changed me. I have garnered a deep acceptance for the realities of life and have learned to adapt to meet all the challenges life offers. I have also developed a zest for life, realizing that it can all be over in the blink of an eye.
I have released many fears. After living with chronic, life-threatening illness daily and looking death squarely in the eye, I have found that not much scares me. Ultimately, everything will always be alright. That is how the Universe is designed. It may not be the way I want it, but it will be the way it is supposed to be.
Love looks different in my life today. Once upon a time, love meant hovering over my children and ensuring they had everything they need and did everything they were supposed to do. Today, I am finding love means letting go, allowing for greater responsibility and believing they can handle it.
Creativity abounds today. And, for that I am extremely grateful. I have been offered opportunities to write in a variety of genres and explore other creative outlets. Walking around with the heart of an artist adds an element of magic to each and every day.
Friendships and relationships have grown and changed. I have always known that people come in and out of my life as God would have them. Opening myself to new friendships and adapting to changes in old friendships has added a richness to my life. Family bonds have strengthened in some areas and broken in others, leaving me feeling grateful.
Thanksgiving requires that I truly reflect upon all the things for which I am grateful. Thus, it is with a grateful heart that I move forward today. It is with grateful eyes that I view the day and all that I have been given.
Saturday, March 31, 2012
How Do I Do It?
It has been such a long time since I have updated this blog. Between Caring Bridge, Facebook and my website, (which has also been woefully neglected), I have definitely dropped the ball here. I wonder how those stars who have all different types of accounts are keeping up with it all, because I sure don't have time to "Tweet" anything. They probably have an entourage of people to do that for them.
Still, here I am today on this quiet, rainy morning. Dave has headed out to do a Triathalon, and I am sitting on the couch, cozy and thoughtfully writing. For those who don't know, or those who have just stumbled across this site, my daughter, Danielle, received a double lung transplant on January 29 of this year. It has been only two months after that scary, miraculous surgery, and she is coming home! We are going to New Orleans this weekend to gather her things from the little apartment right beside Ochsner's where she has been living.
It has been a whirlwind of a ride that leaves me astounded, to say the least. Cystic Fibrosis always had its challenges. When Dan and Sarah were small, I struggled with the trials of daily life and chronic illness. Daily treatments and medicines interspersed with frequent doctor's appointments and occasional hospitalizations with traumatic procedures left me with a roller coaster of emotions. But, what is that old saying? "Yard by yard is too hard. Inch by inch, it's a cinch."
Danielle's senior year, though, things took a drastic turn and Cystic Fibrosis became something more menacing and scary than it had been before. It turned from something we coped with, to a life-threatening illness. Dan's lung functions took a steady downward spiral as she was infected with one illness after another and her lungs began failing. I watched helplessly and cried constantly, feeling like my life had been turned upside down. Any mental vision I had for my child's future was shattered and replaced with a gnawing fear that pursued me relentlessly, and life became simply a matter of putting one foot in front of the other.
Living with CF, and having two children with CF, requires a certain ability to live in denial. I realize I am gifted in this capacity. But, is it really denial, or is it a sense of eternal optimism? Am I in denial, or do I have a child-like faith that God will see me through? Regardless of what you call it, I walked around believing it wouldn't happen to us. My girls would be the ones who lived well into middle age before CF began taking its toll. The statistics wouldn't touch my family.
Math has always been my nemesis, though, and we became one of the n. Because I am a teacher, and because I am also a perpetual student, I ravenously read articles and studies about CF, so I knew the statistics. If you had asked me when the girls were younger, I would have quoted the mean life expectancy for CF patients to whatever unsuspecting soul inquired, and upon seeing the look of horror that erupted on their faces at hearing that CF patients generally live into their 30's, I would shrug and say, "Well, that is the average. I fully expect my girls to live a long, healthy life, and they are working constantly on advancements for CF."
And, then because of my denial, or eternal optimism, I would mentally file all of those statistics and horrible outcomes under the category of "Stuff That Happens to Other CF Families Besides Mine". It was only when I began lugging oxygen around life became a series of hospitalizations running together that CF became less of a simple aggravation and more of a scary force with which to be reckoned.
I began thinking about all of this last night when I went out to dinner with some friends. The topic drifted to the miracle of Dan's transplant and a friend innocently asked, "So, what do the doctor's say about how long Dan has to live now?" And, again, I'm stuck with offering the statistical answer. The mean life expectancy for lung transplant patients is 5 years. But, again, that is the mean. Many patients have lived even up to 25 years after transplant. Still, when I told my friend the average life expectancy, she looked as if I had slapped her and stammered, "But, I thought... I thought she was going to be O.K."
So, I just smiled and said, "Well, I believe that she is going to be O.K. Lots of patients live long, healthy lives after transplant." She will have to take anti-rejection drugs and be careful about things that most people never have to consider, but she is O.K. She has a chance to live. Which, I guess, is really all any of us have. No one is guaranteed a certain amount of time on this earth.
Then she asked the other hard question, "How do you do this?" There is no simple answer, but I do have a toolbox of things I use to make life manageable and even embrace moments of sheer joy. I use the tool of denial. It isn't the unhealthy "stick my head in the sand" kind of denial, but more of a belief that God has a greater plan for my family, so Dan will live a happy, strong life with her new lungs so unselfishly given to her by her wonderful donor.
I use the tool of hope. Every day, I wake up with hope for the day and hope for the future. People ask about Sarah, my 16-year-old with CF, and what can I say except we have hope? Dan's transplant experience has offered hope for Sarah. Do I hope she doesn't have to experience the same thing Dan did with lung failure during her Senior year of high school? Absolutely. But, do I have hope that if she does, we will be granted the tools to handle it? Yes.
I use the tool of community. Friends and family, acquaintances and strangers swoop in to help when I need it. They help with mental, physical, emotional, spiritual and even financial help. I have learned to put aside my pride, and allow people to love me. And, hopefully, we are both blessed.
I use the tool of gratitude. I walk around with a greater sense of gratitude for everything life has to offer. Life looks more wonderful, more colorful and more delightful when a dark shadow of death hovers around. The truth is, that shadow hovers over everyone. It's just that we have been blessed with the opportunity to acknowledge death's lurking presence in our lives. By nodding to the darkness, the light is oh so much brighter. And, I am grateful for every single moment that life has to offer.
I use the tool of faith. Despite the constant, nagging fear I lived with for two years, and the desperate period of mourning that clouded my life when I had to let go of the vision I held for so many years, I have a deep and abiding faith that tells me God is Good all the time. I have experienced love and goodness beyond measure. And, I have no reason to believe God will greet me with anything other than blessings, because unlike people who are granted the challenge of having to go on blind faith, I have been offered real experiences of Divine Love manifesting in my life. Proof of a living God. Proof of Christ in action through others. Proof of God's peace flowing in and through every single fiber of my being. So, mine is not a blind faith. Mine is the faith of experience. Faith in a God who loves my family beyond measure.
Beyond all of these though, I use the tool of love. There are times when I am tired and worn down. Negative thoughts and "why me's" sometimes nest in my brain. However, just like Emmet Fox said, "It makes no difference how deeply seated may be the trouble, how hopeless the outlook how muddled the tangle, how great the mistake. A sufficient realization of love will dissolve it all." Loving people with all their flaws and annoying shortcomings seems to make everything O.K. And, accepting the love of other people, no matter how meager the offering of love, allows a richness to permeate every aspect of my life, making it impossible to stay mired in the negativity for very long.
For each of you today, I hope you feel loved and guided. I hope you know that God wants only goodness and blessings for you. I hope you know that hope abounds. I wish you peace and joy in the midst of whatever circumstances greet you today.
Still, here I am today on this quiet, rainy morning. Dave has headed out to do a Triathalon, and I am sitting on the couch, cozy and thoughtfully writing. For those who don't know, or those who have just stumbled across this site, my daughter, Danielle, received a double lung transplant on January 29 of this year. It has been only two months after that scary, miraculous surgery, and she is coming home! We are going to New Orleans this weekend to gather her things from the little apartment right beside Ochsner's where she has been living.
It has been a whirlwind of a ride that leaves me astounded, to say the least. Cystic Fibrosis always had its challenges. When Dan and Sarah were small, I struggled with the trials of daily life and chronic illness. Daily treatments and medicines interspersed with frequent doctor's appointments and occasional hospitalizations with traumatic procedures left me with a roller coaster of emotions. But, what is that old saying? "Yard by yard is too hard. Inch by inch, it's a cinch."
Danielle's senior year, though, things took a drastic turn and Cystic Fibrosis became something more menacing and scary than it had been before. It turned from something we coped with, to a life-threatening illness. Dan's lung functions took a steady downward spiral as she was infected with one illness after another and her lungs began failing. I watched helplessly and cried constantly, feeling like my life had been turned upside down. Any mental vision I had for my child's future was shattered and replaced with a gnawing fear that pursued me relentlessly, and life became simply a matter of putting one foot in front of the other.
Living with CF, and having two children with CF, requires a certain ability to live in denial. I realize I am gifted in this capacity. But, is it really denial, or is it a sense of eternal optimism? Am I in denial, or do I have a child-like faith that God will see me through? Regardless of what you call it, I walked around believing it wouldn't happen to us. My girls would be the ones who lived well into middle age before CF began taking its toll. The statistics wouldn't touch my family.
Math has always been my nemesis, though, and we became one of the n. Because I am a teacher, and because I am also a perpetual student, I ravenously read articles and studies about CF, so I knew the statistics. If you had asked me when the girls were younger, I would have quoted the mean life expectancy for CF patients to whatever unsuspecting soul inquired, and upon seeing the look of horror that erupted on their faces at hearing that CF patients generally live into their 30's, I would shrug and say, "Well, that is the average. I fully expect my girls to live a long, healthy life, and they are working constantly on advancements for CF."
And, then because of my denial, or eternal optimism, I would mentally file all of those statistics and horrible outcomes under the category of "Stuff That Happens to Other CF Families Besides Mine". It was only when I began lugging oxygen around life became a series of hospitalizations running together that CF became less of a simple aggravation and more of a scary force with which to be reckoned.
I began thinking about all of this last night when I went out to dinner with some friends. The topic drifted to the miracle of Dan's transplant and a friend innocently asked, "So, what do the doctor's say about how long Dan has to live now?" And, again, I'm stuck with offering the statistical answer. The mean life expectancy for lung transplant patients is 5 years. But, again, that is the mean. Many patients have lived even up to 25 years after transplant. Still, when I told my friend the average life expectancy, she looked as if I had slapped her and stammered, "But, I thought... I thought she was going to be O.K."
So, I just smiled and said, "Well, I believe that she is going to be O.K. Lots of patients live long, healthy lives after transplant." She will have to take anti-rejection drugs and be careful about things that most people never have to consider, but she is O.K. She has a chance to live. Which, I guess, is really all any of us have. No one is guaranteed a certain amount of time on this earth.
Then she asked the other hard question, "How do you do this?" There is no simple answer, but I do have a toolbox of things I use to make life manageable and even embrace moments of sheer joy. I use the tool of denial. It isn't the unhealthy "stick my head in the sand" kind of denial, but more of a belief that God has a greater plan for my family, so Dan will live a happy, strong life with her new lungs so unselfishly given to her by her wonderful donor.
I use the tool of hope. Every day, I wake up with hope for the day and hope for the future. People ask about Sarah, my 16-year-old with CF, and what can I say except we have hope? Dan's transplant experience has offered hope for Sarah. Do I hope she doesn't have to experience the same thing Dan did with lung failure during her Senior year of high school? Absolutely. But, do I have hope that if she does, we will be granted the tools to handle it? Yes.
I use the tool of community. Friends and family, acquaintances and strangers swoop in to help when I need it. They help with mental, physical, emotional, spiritual and even financial help. I have learned to put aside my pride, and allow people to love me. And, hopefully, we are both blessed.
I use the tool of gratitude. I walk around with a greater sense of gratitude for everything life has to offer. Life looks more wonderful, more colorful and more delightful when a dark shadow of death hovers around. The truth is, that shadow hovers over everyone. It's just that we have been blessed with the opportunity to acknowledge death's lurking presence in our lives. By nodding to the darkness, the light is oh so much brighter. And, I am grateful for every single moment that life has to offer.
I use the tool of faith. Despite the constant, nagging fear I lived with for two years, and the desperate period of mourning that clouded my life when I had to let go of the vision I held for so many years, I have a deep and abiding faith that tells me God is Good all the time. I have experienced love and goodness beyond measure. And, I have no reason to believe God will greet me with anything other than blessings, because unlike people who are granted the challenge of having to go on blind faith, I have been offered real experiences of Divine Love manifesting in my life. Proof of a living God. Proof of Christ in action through others. Proof of God's peace flowing in and through every single fiber of my being. So, mine is not a blind faith. Mine is the faith of experience. Faith in a God who loves my family beyond measure.
Beyond all of these though, I use the tool of love. There are times when I am tired and worn down. Negative thoughts and "why me's" sometimes nest in my brain. However, just like Emmet Fox said, "It makes no difference how deeply seated may be the trouble, how hopeless the outlook how muddled the tangle, how great the mistake. A sufficient realization of love will dissolve it all." Loving people with all their flaws and annoying shortcomings seems to make everything O.K. And, accepting the love of other people, no matter how meager the offering of love, allows a richness to permeate every aspect of my life, making it impossible to stay mired in the negativity for very long.
For each of you today, I hope you feel loved and guided. I hope you know that God wants only goodness and blessings for you. I hope you know that hope abounds. I wish you peace and joy in the midst of whatever circumstances greet you today.
Sunday, October 30, 2011
Unselfishness
I'm here in Birmingham with Dan. She was discharged from the hospital on Thursday, but we have determined it was probably too soon. Dan takes courses online, and she had scheduled a proctor to administer her Psychology exam on Friday. And, even though I told her we could just reschedule, she insisted that she be discharged so she could go take her test. I can't even begin to tell you how much I admire the kid. She's not asking for any special treatment. No extended time, no reduced requirements, no fussing over her...
However, once she got home on her own, she began feeling extremely nauseous. She is on a rigorous I.V. and treatment schedule, so the routine has been rough. It's hard to care for yourself when you are sick and, well, unable to care for yourself. So, I rocketed up on Friday night, leaving Micah behind for the rest of the family to care for while I came up to help Dan. I'm glad to do it. In fact, I already asked for Monday off so I can help her get settled in the hospital again if that is what she needs.
Tiffany and Jason, Dan's long-time friends, are here visiting from MSU. We have had a nice, low-key visit. I know Dan has felt bad for not being able to really spend a lot of time and enjoy them. It's hard to do when you are throwing up in a trashcan trying, at the same time, to keep your oxygen flowing freely. But, Tiff and Jason have been great sports, and we have made the best of it.
The thing I was thinking about this morning is how much richer my life is because of cystic fibrosis. (Just so the Universe is clear, though, I am entirely open to a burning bush kind of miracle in which the girls are completely healed of all symptoms and go whistling off into the sunset to live happily ever after.) Cystic fibrosis has made me think about what it means to be unselfish. It also helps me to reflect on how some of my most selfish times with CF have been during hospital stays and times when the outside world looks on projecting that I am the most unselfish Mom in the whole world.
There are moments with this whole journey when I am so sad. Usually when I drive away from Streetman Circle in Birmingham, the tears start and I'm unable to contain my sobbing. There are other moments too. Yesterday, Tiffany, Jason and I went to Wal-Mart and Tiff was telling me all about how she searched for a cat costume for Dan. Tiffany didn't know it because I was driving along with my sunglasses on, but my throat got tight and my eyes started to burn with that lurking sadness threatening to overtake me.
However, the thing I have really learned is to look at the sadness before it invades to figure out where it is coming from. There are so many times when I realize the sadness stems from a deep-seated selfishness. When I leave her behind in Birmingham my sadness sometimes comes from the thoughts: I love her. I miss her. I want her home with us. This isn't fair. I'm not sure how much longer I can do this. If you'll notice, all those thoughts are riddled with "I". Focusing on me has not brought me any solace, peace or happiness, generally. Unless I am able to find a way to focus on my gratitude in the situation instead of what I have lost or what I am afraid of losing.
Sometimes, though, my sadness is not about me. It is about true empathy, compassion and love for my child. And, probably if I give myself a break, my sadness is usually an intermingling of a focus on my losses and fears and a true sadness for my child. The sadness I felt yesterday when Tiffany was telling me about searching for a Halloween costume was just because I want so much for her to experience the joy of Halloween parties and dancing and living a care-free life at college like all of her friends. And, while my sadness doesn't stem from a selfish place, it doesn't help our situation in the moment.
So, in moments when the sadness looms, I have to turn my eyes to God and say, "Thank you." God is all-loving, all powerful, omnipotent and Good all the time. When I remember the nature of God, I can rest in the perceived difficulties of our circumstances. Thank you, God, for a husband and parents who are able to care for my three-year-old. Thank you, God, that I have such a tremendous young woman in Danielle who is blessed with a positive outlook and spirit of overcoming. Thank you, God, for Danielle's friends who love her and visit her regardless of what she is able to do. Thank you, God, for my friends who listen, never really knowing what to say, but always providing strong support upon which I can lean. Thank you, God, for Danielle and Sarah's dad who has become CF Dad Extraordinaire in his own right. Thank you, God, for healing Danielle in your perfect way. Thank you, God, for taking care of Sarah and watching over her health. Thank you, God, for Micah who provides love and laughter to our family. Thank you, God, for this life that was perfectly designed for me to bring me the most love, the most joy and the most blessings of any other life I could have had.
However, once she got home on her own, she began feeling extremely nauseous. She is on a rigorous I.V. and treatment schedule, so the routine has been rough. It's hard to care for yourself when you are sick and, well, unable to care for yourself. So, I rocketed up on Friday night, leaving Micah behind for the rest of the family to care for while I came up to help Dan. I'm glad to do it. In fact, I already asked for Monday off so I can help her get settled in the hospital again if that is what she needs.
Tiffany and Jason, Dan's long-time friends, are here visiting from MSU. We have had a nice, low-key visit. I know Dan has felt bad for not being able to really spend a lot of time and enjoy them. It's hard to do when you are throwing up in a trashcan trying, at the same time, to keep your oxygen flowing freely. But, Tiff and Jason have been great sports, and we have made the best of it.
The thing I was thinking about this morning is how much richer my life is because of cystic fibrosis. (Just so the Universe is clear, though, I am entirely open to a burning bush kind of miracle in which the girls are completely healed of all symptoms and go whistling off into the sunset to live happily ever after.) Cystic fibrosis has made me think about what it means to be unselfish. It also helps me to reflect on how some of my most selfish times with CF have been during hospital stays and times when the outside world looks on projecting that I am the most unselfish Mom in the whole world.
There are moments with this whole journey when I am so sad. Usually when I drive away from Streetman Circle in Birmingham, the tears start and I'm unable to contain my sobbing. There are other moments too. Yesterday, Tiffany, Jason and I went to Wal-Mart and Tiff was telling me all about how she searched for a cat costume for Dan. Tiffany didn't know it because I was driving along with my sunglasses on, but my throat got tight and my eyes started to burn with that lurking sadness threatening to overtake me.
However, the thing I have really learned is to look at the sadness before it invades to figure out where it is coming from. There are so many times when I realize the sadness stems from a deep-seated selfishness. When I leave her behind in Birmingham my sadness sometimes comes from the thoughts: I love her. I miss her. I want her home with us. This isn't fair. I'm not sure how much longer I can do this. If you'll notice, all those thoughts are riddled with "I". Focusing on me has not brought me any solace, peace or happiness, generally. Unless I am able to find a way to focus on my gratitude in the situation instead of what I have lost or what I am afraid of losing.
Sometimes, though, my sadness is not about me. It is about true empathy, compassion and love for my child. And, probably if I give myself a break, my sadness is usually an intermingling of a focus on my losses and fears and a true sadness for my child. The sadness I felt yesterday when Tiffany was telling me about searching for a Halloween costume was just because I want so much for her to experience the joy of Halloween parties and dancing and living a care-free life at college like all of her friends. And, while my sadness doesn't stem from a selfish place, it doesn't help our situation in the moment.
So, in moments when the sadness looms, I have to turn my eyes to God and say, "Thank you." God is all-loving, all powerful, omnipotent and Good all the time. When I remember the nature of God, I can rest in the perceived difficulties of our circumstances. Thank you, God, for a husband and parents who are able to care for my three-year-old. Thank you, God, that I have such a tremendous young woman in Danielle who is blessed with a positive outlook and spirit of overcoming. Thank you, God, for Danielle's friends who love her and visit her regardless of what she is able to do. Thank you, God, for my friends who listen, never really knowing what to say, but always providing strong support upon which I can lean. Thank you, God, for Danielle and Sarah's dad who has become CF Dad Extraordinaire in his own right. Thank you, God, for healing Danielle in your perfect way. Thank you, God, for taking care of Sarah and watching over her health. Thank you, God, for Micah who provides love and laughter to our family. Thank you, God, for this life that was perfectly designed for me to bring me the most love, the most joy and the most blessings of any other life I could have had.
Friday, September 23, 2011
Things are Never What They Seem
I thought I would have so much more time to write when I got this new job. Visions of no lesson plans, free time and leaving concerns about children at school nestled into my brain. The problem with all that freedom is that I took myself with me to my new job.
Those visions of no lesson plans didn't really pan out because I taught a class on Emergent Reading Strategies for the past three weeks. Given that teachers were required to take something and they chose my class, I felt a big responsibility to make it informative, helpful and practical. It was a great class, though, and I learned a lot from the teachers. Hopefully, they took away some tips and strategies to help children learn to read, as well.
Free time? Hmm... Well, we visited Dan earlier in the month for Labor Day weekend. It is so weird to realize that she has been living in Birmingham for over a year now waiting for lungs. And, she is a trooper. She takes each day as it comes. She is exercising daily. Most of all though, she defines hope, faith and love. We talk every night on Facetime (SO much better than Skype).
Sarah has gotten sick recently, and she is currently in the hospital. Hospital stays are easier with Sarah in some ways and harder in others. Generally, she doesn't want anyone hovering over her and staying with her in the hospital. But, emotionally it is rough for her. She is moody and dissatisfied and pretty much annoyed throughout her stay. As CF Mom Extraordinaire I feel a responsibility to help make it better. And, I can't. Learning to live with grace and dignity in the face of formidable odds is difficult for many adults I know, much less a 16-year-old kid who just broke up with her boyfriend of nearly three years. Still, I know that she is in good hands, and while she isn't happy to be in the hospital, Sarah doesn't know how to slow down outside of the hospital, and she needs to focus completely on her health for now.
Micah is three. Three. Years. Old. She's brilliant, funny and active and she makes the world go round in our family. Our own personal sun. Giving her the attention she needs is probably the most important thing to everyone in the family. I have been amazed at how quickly the time goes, and I don't want to waste a moment.
Dave is pursuing his Doctorate. He keeps telling me he will require me to call him "Dr. Dave" when he completes his degree. He still keeps everything going most of the time and serves as my rock. Dave commands the world to be quiet for a while so I can take a breath, look around and realize that it will all be O.K.
Finally, those carefree evenings of a mind unfettered by concerns over children... I'm still waiting for those evenings. Even though I'm not in the classroom directly this year, I haven't stopped loving kids. I take it to heart when my parents (for non-teachers I'm not referring to Mom and J.R., I'm talking about students' parents) are dissatisfied about their children's education. Some kids are hungry, and they only eat at school. Some kids are badly behaved leaving me to wonder what is happening when they leave the protection of school. Some kids are mentally or emotionally unstable. Some kids have to be removed from their homes when their parents have engaged in abuse. And, there are more of them. Their faces follow me home at night. I lay my head down, pray and meditate that God protects the children in my path. I ask that I can, in some small way, help bring peace to the kids I serve.
Still, living life as it presents itself is such a great blessing to me. The opportunities I have been given, and the people with whom I have been gifted have evoked waves upon waves of gratitude. Taking each day one step at a time is a challenge, but one that is wholly mine. And, little by little I'm learning to look past appearances, be kind to myself and take time to look around so that I don't miss the experience. Life is a joy, and I hope I can always see past the rubbish to the treasures that lie beneath.
Sunday, August 07, 2011
Looking Through a Lens of Love...
Yesterday, PBS was playing in my living room, as it often is on a Saturday morning. After Thomas the Tank, PBS launched a fund-raising program with Wayne Dyer. Well, I happen to love Wayne Dyer, so much to Micah's chagrin, I stayed tuned. Sponge Bob was not forthcoming. Although, if I am in the right mood, I can ferret out some little spiritual tidbits from Sponge Bob too, but Wayne Dyer requires less reach. The program was about giving up excuses, but in his way, Dyer always lands on those simple, Universal Truths that really seem to resonate with me.
In the course of the program, he stated that there are really only two emotions: fear and love. I have heard this before in a different context, but being reminded is never a bad thing. I was left with some personal reflection about how all the suffering I endure is simply because I am approaching a situation from a place of fear, rather than a place of Love. And, I can pretty much apply it to anything... Mom always says, "Anger is fear with teeth in it." Thus, even in some of my more righteously indignant quests like student advocacy or protesting inequities, I'm still coming from a place of fear, even though the cause may be noble.
However, I truly believe people can change... All people. Including myself. I can turn a situation around and choose to come from a place of Love. Sometimes it just takes me longer to get there. Generally, when I have suffered enough, I choose Love. And, Love helps me see things through a different lens. It leads me to compassion, empathy and hope, even for those who don't "deserve" it. Even for people who have directly "wronged" me... Even in situations that seem awful. Love changes everything. Love (God) means it all for good. And, when I can remember that, I feel SO much better. Actually, I AM so much better.
In the course of the program, he stated that there are really only two emotions: fear and love. I have heard this before in a different context, but being reminded is never a bad thing. I was left with some personal reflection about how all the suffering I endure is simply because I am approaching a situation from a place of fear, rather than a place of Love. And, I can pretty much apply it to anything... Mom always says, "Anger is fear with teeth in it." Thus, even in some of my more righteously indignant quests like student advocacy or protesting inequities, I'm still coming from a place of fear, even though the cause may be noble.
However, I truly believe people can change... All people. Including myself. I can turn a situation around and choose to come from a place of Love. Sometimes it just takes me longer to get there. Generally, when I have suffered enough, I choose Love. And, Love helps me see things through a different lens. It leads me to compassion, empathy and hope, even for those who don't "deserve" it. Even for people who have directly "wronged" me... Even in situations that seem awful. Love changes everything. Love (God) means it all for good. And, when I can remember that, I feel SO much better. Actually, I AM so much better.
Thursday, June 09, 2011
Bored with My Own Drama
I haven't posted anything here since "The Call". I have been writing other things and was busy with the end of school, etc., etc... But, mainly, I have gotten bored with my own drama. Dan became really sick in May and was hospitalized for nearly three weeks. She got a stomach virus that rolled into a full-blown lung infection complete with coughing up what appeared to be bits of tissue. (Yes, you've heard the phrase, "coughing up a lung"... Well, apparently, it's true. Not just a figure of speech.)
She was released from the hospital without truly being well and was hospitalized approximately two weeks later for decrease in lung function. However, she was discharged yesterday, on her Grammy's birthday, and is feeling so much better. My parents are going up tomorrow to visit for the weekend and Dave, Sarah, Micah and I will follow up with a visit next week.
I know everyone wants to know how she is doing and probably checks Caring Bridge, which I have also woefully neglected, but right now I am just weary. Weary of talking about it. Weary of living it. Weary of feeling it. Not every day. Not all the time. But, often. Often I just don't want to talk about how Dan is doing. She needs lungs. She struggles to breathe. And, it hurts my heart to watch her.
At the same time, I refuse to live a sad, sorry life. Screw that. Our last visit, we packed up the oxygen tanks, rented a pontoon boat and cruised Lake Purdy in Birmingham. Our next visit we plan to go to the Birmingham Zoo. But, how is she doing? Well, she can't walk up the driveway at her dad's house because he has a huge hill. We push her in a wheelchair for walks longer than a few hundred yards and she uses the little motorized shopping cart at Target. When she is really winded, she has to work so hard just to shower that sometimes she is sweating so bad after the exertion that she could really turn around and shower again. And, she misses her friends. She doesn't really have the opportunity to get out and meet friends her own age because it is a little hard to be a beautiful, blond bombshell sporting an oxygen canula and with an oxygen tank in tow. (Don't get me wrong, though... She totally rocks the look.) And, she smiles and tells me every day that she is 'fine'... Always fine.
So, I'm humbled. I stand in the shadow of her greatness and try to be worthy of being her mom. I walk around emotionally torn in half all the time. A part of my heart lives in Birmingham with her while I try desperately not to neglect Sarah, Micah and Dave by becoming mired in fear about Dan. I have moments of such faith and trust in God, I shock myself.
Still, I miss her. If CF hadn't ravaged her lungs like it did, she would be attending our local community college, working a little job somewhere, and enjoying time with friends. She would have a boyfriend (if she wanted one). Her life would look very different.
I have moments of righteous indignation when I am so angry about the injustice of it all. But, then I remember I can't afford to be angry. I don't want to waste time being angry. I don't want to waste time being sad or feeling sorry. Life is too short. So, I take a deep breath. I breathe thinking of Dan... Sending loving intent in that breath to her new lungs that are still walking around in the world... And, I go back to feeling grateful that I have a wonderful, beautiful nearly 19-year-old daughter who is strong and competent. I have a spunky, witty nearly 16-year-old daughter managing to go forward and live life with fervor even though she has CF too. I have an incredibly smart, loquacious nearly 3-year-old who makes us all smile and laugh with joy in the moment. And, I have a supportive, attentive husband with whom to share it all. My family and friends are the best.
Thus, I am grateful in this moment, but overall I just get tired of the play-by-play. We are doing O.K. I'm sorry for not posting more regularly. But, when I'm scared, I'd just rather not say so. When I'm sad, I'd just rather let it pass. I'd rather embrace the joy of life and bask in the sunlight of the spirit as it graces our lives. Thank you so much for caring. Thanks for asking. Thanks for praying. And, thanks for your love.
Wednesday, April 27, 2011
April 18th- The Call
Last week was Spring Break. We had gone to the McWane Science Center in downtown Birmingham. It is a great little children's museum right around the corner from UAB, and we decided to take Micah. Just being with Micah and watching her explore is fun for the rest of us. She gets so excited, and I'm reminded about all the wonder of the world when I look through Micah's eyes for a little while. We were sitting in an iMax movie about saving baby elephants and orangutans called "Born to Be Wild".
I was imagining what my hair might look like if I were one of the women in the movie... Living in the jungle or on the dry plains with no hair products... It would be frizz city. Although, Argon oil is supposed to come from one special tree somewhere in Africa. Maybe I could get the oil directly from the source...
Suddenly, I was jerked from my hair revery when Dave leaned over and whispered, "We have to go. Dan just got a call."
It was about 3:15 in the afternoon. Somehow, we scrambled around and staggered out of the theater into the hall. Micah began jumping up and down saying, "Yay! We get to go to the castle now."
Randy was in Mobile working. We had arranged to trade places over Spring Break so that Dan wouldn't be left alone at any point. I stepped away from Micah's excited squealing to call Randy. He gave me a number and instructed me to call someone named Janice.
As I hung up and called UAB, I couldn't help but feel deep down in my gut that this was really it. The only problem was that Sarah was at Disney with the band. So, any phone tree plan had to be cut. (Couldn't help the pun- sorry.) Dave called Mom, and Randy called Maxine, but that was the extent of our calling. In a way, it was kind of comforting to be in the process without the pressure of updating anything or answering any questions. Also, I knew I was protecting Sarah from worrying, which made me feel like I was doing something by not doing anything.
After breaking the news to Micah that we wouldn't be going to the castle, but to the hospital to get some new lungs for Dan, we made our way to the parking garage and drove the two blocks to UAB's parking garage. Dave parked the car with Micah, while I wheeled Dan in her wheelchair to wait in the lobby area where people pay for their parking at these machines that look like ATMs, but they are instead strictly designed for sucking money out of your account without giving you anything in return except releasing you from the parking garage. Which, upon reflection, is worth paying for...
After Dave parked the car, we plopped Micah on Dan's lap in the wheelchair and proceeded to the 5th floor where we were greeted by a large gold sign reading, "Cardiothoracic Surgery". There was no desk or any obvious place to check in, so we meandered down the hallways passing patient rooms labeled with various signs like, "Fall Risk" or "NPO" to arrive at a huge nurses' desk in the middle of the floor. A little brunette lady looked up for her computer saying, "Can I help you?"
I responded, "Yes. This is Danielle Sargent. We got a call..." She popped right up.
"Yes. We were expecting you. Come this way." We were led into a relatively large room with several uncomfortable reclining chairs each labeled with handwritten last names. "Sargent", "Dancer", "Prancer" and "Blitzen". I suppose I have no reason to protect anonymity, but something in me feels like that is the right thing to do. Plus... Who doesn't love Santa's reindeer?
Dan got settled into her designated recliner while Dave, Micah and I stood about nervously shuffling around. A young 20-something girl was sleeping in a recliner on one end of the room, while a lady who was obviously her mom chatted amiably with one of the nurses. She turned to us offering Dave her chair, but he declined saying, "No, thanks. I'm kind of keyed up at the moment."
"I understand perfectly," she nodded, "I've been there." Later, when I asked if her daughter had gotten a lung transplant, she explained that she had received a heart. I'm not certain what type of follow-up treatment she was having in the room, but once it was complete they unhooked her from the I.V., she donned a huge pair of Jackie-O sunglasses and strutted out of the room new heart and all. And, the sight of that beautiful, blond 20-something girl walking out with her shiny, brand-new heart made my heart soar with the hope and promise of everything that is possible for Dan with new lungs.
The nurses directed Dave and Micah out to a specific waiting room for families, and I went back to help Dan into the hospital gown. The nurse accessed Danielle's port and drew about eight tubes of blood. They ran all sorts of labs to make sure Dan was healthy enough for transplant and I guess to determine the best match for organs. And, we waited.
We waited until Ms. Prancer arrived. She was a tiny little lady of near 60, accompanied by a tiny little husband dressed all in black like Johnny Cash. After they were settled and blood was drawn, we had opportunity to hear bits and pieces of her transplant story, although we never really heard the name of her actual diagnosis. We learned that she had been listed for over three years and was currently double listed at UAB and Emery in Atlanta. She also revealed that she had some type of strange antibody problem that made finding a match even more difficult for her. As she explained it, there is some sort of childhood illness that everyone gets developing antibodies in a person's system. She never got the illness, so when donor lungs have this particular antibody, her system is more likely to reject the donor lungs. She explained that she raised children and grandchildren and this time in her life was supposed to be for her and her husband to enjoy.
I felt for her. Really, I did. You can't sit with someone on 10 liters of oxygen who is obviously really sick and awaiting transplant and not feel empathy. But, still the only thought coursing through my brain was, "I'm sorry for your situation, but these are Dan's lungs. You've lived so many years. You have a little husband dressed all in black sitting beside you holding your hand. You've had children. You've had grandchilren. These are Dan's lungs. I'm here. We were downtown. The situation is perfect. These are Dan's lungs."
But, the instant I thought it I prayed, "God, it seems like everything is perfect and I am so grateful for this experience no matter what... Only You know if these are Dan's lungs. Please bless these people. Bless us. Help me to accept whatever is to be. Help me to trust in Your Power and the Bigness of this Process."
I was imagining what my hair might look like if I were one of the women in the movie... Living in the jungle or on the dry plains with no hair products... It would be frizz city. Although, Argon oil is supposed to come from one special tree somewhere in Africa. Maybe I could get the oil directly from the source...
Suddenly, I was jerked from my hair revery when Dave leaned over and whispered, "We have to go. Dan just got a call."
It was about 3:15 in the afternoon. Somehow, we scrambled around and staggered out of the theater into the hall. Micah began jumping up and down saying, "Yay! We get to go to the castle now."
Randy was in Mobile working. We had arranged to trade places over Spring Break so that Dan wouldn't be left alone at any point. I stepped away from Micah's excited squealing to call Randy. He gave me a number and instructed me to call someone named Janice.
As I hung up and called UAB, I couldn't help but feel deep down in my gut that this was really it. The only problem was that Sarah was at Disney with the band. So, any phone tree plan had to be cut. (Couldn't help the pun- sorry.) Dave called Mom, and Randy called Maxine, but that was the extent of our calling. In a way, it was kind of comforting to be in the process without the pressure of updating anything or answering any questions. Also, I knew I was protecting Sarah from worrying, which made me feel like I was doing something by not doing anything.
After breaking the news to Micah that we wouldn't be going to the castle, but to the hospital to get some new lungs for Dan, we made our way to the parking garage and drove the two blocks to UAB's parking garage. Dave parked the car with Micah, while I wheeled Dan in her wheelchair to wait in the lobby area where people pay for their parking at these machines that look like ATMs, but they are instead strictly designed for sucking money out of your account without giving you anything in return except releasing you from the parking garage. Which, upon reflection, is worth paying for...
After Dave parked the car, we plopped Micah on Dan's lap in the wheelchair and proceeded to the 5th floor where we were greeted by a large gold sign reading, "Cardiothoracic Surgery". There was no desk or any obvious place to check in, so we meandered down the hallways passing patient rooms labeled with various signs like, "Fall Risk" or "NPO" to arrive at a huge nurses' desk in the middle of the floor. A little brunette lady looked up for her computer saying, "Can I help you?"
I responded, "Yes. This is Danielle Sargent. We got a call..." She popped right up.
"Yes. We were expecting you. Come this way." We were led into a relatively large room with several uncomfortable reclining chairs each labeled with handwritten last names. "Sargent", "Dancer", "Prancer" and "Blitzen". I suppose I have no reason to protect anonymity, but something in me feels like that is the right thing to do. Plus... Who doesn't love Santa's reindeer?
Dan got settled into her designated recliner while Dave, Micah and I stood about nervously shuffling around. A young 20-something girl was sleeping in a recliner on one end of the room, while a lady who was obviously her mom chatted amiably with one of the nurses. She turned to us offering Dave her chair, but he declined saying, "No, thanks. I'm kind of keyed up at the moment."
"I understand perfectly," she nodded, "I've been there." Later, when I asked if her daughter had gotten a lung transplant, she explained that she had received a heart. I'm not certain what type of follow-up treatment she was having in the room, but once it was complete they unhooked her from the I.V., she donned a huge pair of Jackie-O sunglasses and strutted out of the room new heart and all. And, the sight of that beautiful, blond 20-something girl walking out with her shiny, brand-new heart made my heart soar with the hope and promise of everything that is possible for Dan with new lungs.
The nurses directed Dave and Micah out to a specific waiting room for families, and I went back to help Dan into the hospital gown. The nurse accessed Danielle's port and drew about eight tubes of blood. They ran all sorts of labs to make sure Dan was healthy enough for transplant and I guess to determine the best match for organs. And, we waited.
We waited until Ms. Prancer arrived. She was a tiny little lady of near 60, accompanied by a tiny little husband dressed all in black like Johnny Cash. After they were settled and blood was drawn, we had opportunity to hear bits and pieces of her transplant story, although we never really heard the name of her actual diagnosis. We learned that she had been listed for over three years and was currently double listed at UAB and Emery in Atlanta. She also revealed that she had some type of strange antibody problem that made finding a match even more difficult for her. As she explained it, there is some sort of childhood illness that everyone gets developing antibodies in a person's system. She never got the illness, so when donor lungs have this particular antibody, her system is more likely to reject the donor lungs. She explained that she raised children and grandchildren and this time in her life was supposed to be for her and her husband to enjoy.
I felt for her. Really, I did. You can't sit with someone on 10 liters of oxygen who is obviously really sick and awaiting transplant and not feel empathy. But, still the only thought coursing through my brain was, "I'm sorry for your situation, but these are Dan's lungs. You've lived so many years. You have a little husband dressed all in black sitting beside you holding your hand. You've had children. You've had grandchilren. These are Dan's lungs. I'm here. We were downtown. The situation is perfect. These are Dan's lungs."
But, the instant I thought it I prayed, "God, it seems like everything is perfect and I am so grateful for this experience no matter what... Only You know if these are Dan's lungs. Please bless these people. Bless us. Help me to accept whatever is to be. Help me to trust in Your Power and the Bigness of this Process."
A little while later Ms. Blitzen arrived with her husband. She, like Ms. Prancer, was 60 something. And, I thought, "I don't want to lose my mom at this age, but Mom would want Dan to live more than she would want lungs for herself. These are Dan's lungs. I wonder what these older patients are thinking when they look at Dan. Well, I don't really care. These are Dan's lungs."
And, in the next instant, looking at Ms. Blitzen, "God. Forgive me. Of course, I care about people. I have no idea what is supposed to happen here. Please let Your will be done. And, please help me maintain some level of serenity here."
By about 7:30 p.m. I learned that all the other patients were single lung transplant patients, while Dan needs a bi-lateral transplant. I had been out to the waiting area to update Dave, and call Randy and Mom. Dave and I decided he should go to Randy's house to pack some things for Dan and I, so that he would be ready to take Micah back for the night. He also went to get us some sandwiches since we hadn't eaten anything since lunch. (Dan, of course, was not allowed to eat anything in case she had to go into surgery.)
Mr. Dancer was the last to arrive. As it turned out, this had been his fourth call in five days. He was from Jackson, MS, and every time he got a call, he drove 3 hours and 45 minutes to get to UAB. His wife shared that he had idiopathic pulmonary fibrosis. That is the same disease listed as the cause of death on my natural father's death certificate. Dave and I had been taking turns between Dan and Micah, and he overheard the nurse talking to Mr. Dancer. He reported smoking for years and drinking regularly.
When Dave relayed the conversation to me I thought, "These are Dan's lungs. She didn't smoke. She hasn't done anything to deserve what CF has done to her body. I'm sorry for my fellow Mississippian. I feel for his wife. But, these are Dan's lungs."
And, in the next restless, tired moment, "God... Please let these be Dan's lungs. If it's Your will, please let these lungs be hers."
But, they weren't.
Dave came to relieve me while I ate my sandwich and spent a little time with Micah. She was extremely cranky and needed sleep. I waited with her in the family waiting room trying to settle her down. At about 10:30, Dave came out and said the lungs were not viable. I wasn't disappointed. I wasn't anything except tired.
So, Dave and I went back to the room with Micah in tow and watched everyone packing up to go home. We bid our fellow would-be transplant patients good-bye and packed everything up to head back to Randy's. It was about 11:30 when we finally got back to the house and into bed with a very tired Micah.
As I lay my head down at night, I felt amazingly serene. It had really seemed like it was going to be "the" time. It just seemed so right since I happened to be there. But, I was heartened by the experience. I felt relieved that I may actually have time to get to the hospital before they roll her back for surgery. And, I understand the process better. Honestly, I don't know what I was thinking before, but all I have read didn't allow the process happening on the donor's side of things to really sink into my brain. I learned that donor lungs will always come from a controlled setting in which a person is declared "brain-dead" and removed from life support. I knew someone was losing a loved one, but I guess my idea about the whole process was that someone checked a driver's license and scheduled a surgery. Instead, I now have a vision of a family member sitting by a bedside while a doctor or nurse shuts off life support. At that point, a team of doctor's descend to operate and removed the organs the donor's family has allowed. Only at that point, when one of the transplant surgeons visually looks at the lungs do we know if the lungs are viable, and if they are a match for Dan.
Those weren't Dan's lungs. But, its O.K. Her lungs are still in someone's body... A living, breathing person's body. And, I will continue to be up and down and prayerful in between the peaks and valleys.
Sunday, March 27, 2011
Curiosity
Dan looked at me through the computer on Skype Thursday evening and relayed the events of that afternoon. She had been scheduled to start home I.V. therapy, but the home health nurses were unable to get her port to flush. Further, she experienced burning and swelling in her chest every time they forced the plunger down on the syringe. So, even though she began insisting I didn't need to come, I packed up and made the drive to Birmingham that evening. She was admitted to the hospital through the Emergency Room, and after an x-ray and ultrasound it was determined that she needs a new port. After being completely irate and infuriated all over again at the surgeon who placed her port in the first place, I have come to accept that God has a plan. It is better this happened now than in the middle of transplant or shortly after. She will be able to get everything she needs during her surgery and after without a problem, so that is a blessing. We will need lots of prayer because she will not receive general anesthesia. That can be dangerous to her lungs at her current functions, so they will be using local anesthesia (numbing the area) and sedation drugs. UAB is very different from USA. In some ways if you've done one hospital stay, you have done them all... But, we are hospital connoisseurs. We have seen the best and the worst and everything in between. Further, Dan is no longer being seen at a Children's Hospital, so some of the differences are probably due to the fact that the adult hospital is not as familiar with dealing with parents. Still, we are adjusting and learning how to best advocate for what Dan needs. However, at UAB, we have to pay closer attention to what the doctors' orders are and what each person says with regard to her treatment, because after they leave the room, the next person coming in has no clue what has been said. I'm thinking, "Don't y'all write it down in a chart or type it in a computer... Something... Jeeze. Jot it on a post-it. Send a text. Post it to your Facebook wall." Just communicate. With all the techonology available, there is no excuse... And I will be happy to lend someone a pen. The most interesting thing this stay, though, has been all the curious sights and events in the corridor. In every hospital, there are two categories of people. (Well, three- But, the people visiting new babies don't really count.) There are the people visiting whose family members have had some sort of trauma or have had to have a surgery for something. They wander around looking tired and bewildered about the whole experience. These are the uninitiated. I don't fall into that category. And, I look upon them with envy sometimes. I imagine them going home and talking at dinner several years after the fact about the time that so-and-so was in the hospital and how horrible and traumatic it was. Then there is my category of folk. We are the initiated. We joined a club that we never wanted to join with people we didn't particularly ever want to meet. There is something different in the eyes of the initiated. When we meet each other's gaze, we simply nod to one another giving a empathetic little smile silently wishing one another well. We come and we visit. We stay and we hold hands. Sometimes we throw fits; we cry; we rest fitfully; we pray fervently... We even have moments of laughing hysterically and chatting amiably. Probably, we look somewhat the same as the uninitiated. The difference is we know this is not the last time. We know the last time is in the future, and while we would welcome the relief of not having to come back to the hospital, sometimes not coming back would mean the loss of the person we are here loving and waiting upon. So, we endure. We wander down for coffee and tell a story with our eyes that never needs to be spoken aloud. The initiated don't interest me. I feel for them, and while I occasionally have had the opportunity and sometimes privilege to learn their stories, I don't seek it. I'm not curious. I am, however, extremely curious about the stories of the uninitiated. Currently, there is a family of about 20 people who have brought pillows, blankets, sleeping bags and clothing and have set up a camp in the atrium lobby. Often you see people slumped in a chair exhausted and napping, but rarely do you see a huge family of people in jammies and nighties camping around in the lobby. It's like they are waiting for concert tickets yearning to be the first in line... And, so I wonder about their story. I'm going to church this morning, so I need to shower as to not offend my pew mates. Thanks for your support and your prayers. And, don't feel guilty for being one of the uninitiated. I hope you never need to join our club.
Saturday, March 05, 2011
The Power of Encouragement
We are heading up to Birmingham to visit Dan for Mardi Gras break. It will be so great to have a chance to visit. And, as most of you know, she is mondo-excited about getting a car. Before we charge out, though, I just had to take a moment to write about the power of encouragement.
This week at school, teachers presented on different chapters from the book, "Teach Like a Champion". (Note the Prezi below...) It's one of those books I wish I had read my first couple of years teaching, but it is nice to be reminded of some of the principles for successful teaching and classroom management. During one presentation offered by one of my fantastic special education colleagues, she reminded us all of the power inherent in positive praise and encouragement. Dr. Becky Bailey talks about using specific praise to build feelings of intrinsic reward for children.
When I first started teaching, (and for many years, actually), I used a token economy system of a "checkbook". My students would earn money for positive behavior, lose money for negative behaviors and shop weekly with the balance in their checkbook. It worked. However, I stopped using it after one of Jill Molli's Conscious Discipline trainings. Jill talked about setting children up for failure as adults by not teaching them positive strategies to manage upset and make choices. Essentially, my checkbook system may have subconsciously programmed children to believe, "If I do something good, I get to buy myself something..." Well, I watch that show, "Hoarders", and goodness knows I don't want to be a party to creating a compulsive shopper. But, more than that... I got what she was saying. Motivation must be intrinsic to work for a lifetime. My co-teacher also reminded of that during her presentation of "Teach Like a Champion" techniques. I'm trying to offer students lessons that will last a lifetime, not just for the year or two they call me their teacher.
I've come to believe that if something is True with a capital T, then it is true in a variety of ways, and the idea is prone to show up in all manner of media and print. I imagine it is just a little bit of Divine Wisdom inserting Itself into the universe. So, right after I heard that lesson presented at school, I received the lesson in my own life.
I have never been a "bound out of bed and great the day with enthusiasm" kind of girl. I also lost my "party all night and into the wee hours of the morning" energy of my youth some time during my 20's. However, after I began writing professionally last year, I found I had all sorts of energy. I would stay up typing late into the night, and constantly had thoughts and topics about writing racing through my head... My head still kind of works like an on-going blog, but I found my creative mind to be pretty quiet after Dave and I visited D.C. to take care of his brother's affairs upon his early alcoholism-related death. Then my grandmother died the week after, and the events of those late January-early February events left me sick with strep and physically exhausted... In short, I was back to my old, tired, pre-writing self.
Then last night I received an e-mail from the publisher of a magazine to which I am currently contributing requesting I call her. The magazine is a Mississippi Delta-based publication called By U that promotes "good deed doing" for others. Last night, when I called her she told me that a letter I had written for the magazine requesting donations for a little girl with health problems had generated a many contributions from people across the nation. She told me people were touched by my letter in a way that has prompted great monetary contributions. Essentially, God used my writing ability and By U Magazine to bring tremendous blessings to a young girl and her family. (I am attaching the letter below, and if anyone feels moved to contribute, I will find out how you can help.)
After my phone call in which I received specific praise for something I had done, my energy returned and I found myself typing well into the night. Dave and I have jokingly been calling it my "super power", but I realize now what it is... The power of encouragement sparks the "God energy" in each of us. Usually, I sign my e-mails and letters "Namaste'", which loosely translated means the Divine in me, honors the Divine in you. Well, truly, when my publisher honored the Divine in me with specific praise for a job well done, a fire was lit with the spark of encouragement.
So, I say to you on this day, "Namaste'". You have the strength within to do anything that is yours to do. Absolutely anything.
Tatyana's Story:
This week at school, teachers presented on different chapters from the book, "Teach Like a Champion". (Note the Prezi below...) It's one of those books I wish I had read my first couple of years teaching, but it is nice to be reminded of some of the principles for successful teaching and classroom management. During one presentation offered by one of my fantastic special education colleagues, she reminded us all of the power inherent in positive praise and encouragement. Dr. Becky Bailey talks about using specific praise to build feelings of intrinsic reward for children.
When I first started teaching, (and for many years, actually), I used a token economy system of a "checkbook". My students would earn money for positive behavior, lose money for negative behaviors and shop weekly with the balance in their checkbook. It worked. However, I stopped using it after one of Jill Molli's Conscious Discipline trainings. Jill talked about setting children up for failure as adults by not teaching them positive strategies to manage upset and make choices. Essentially, my checkbook system may have subconsciously programmed children to believe, "If I do something good, I get to buy myself something..." Well, I watch that show, "Hoarders", and goodness knows I don't want to be a party to creating a compulsive shopper. But, more than that... I got what she was saying. Motivation must be intrinsic to work for a lifetime. My co-teacher also reminded of that during her presentation of "Teach Like a Champion" techniques. I'm trying to offer students lessons that will last a lifetime, not just for the year or two they call me their teacher.
I've come to believe that if something is True with a capital T, then it is true in a variety of ways, and the idea is prone to show up in all manner of media and print. I imagine it is just a little bit of Divine Wisdom inserting Itself into the universe. So, right after I heard that lesson presented at school, I received the lesson in my own life.
I have never been a "bound out of bed and great the day with enthusiasm" kind of girl. I also lost my "party all night and into the wee hours of the morning" energy of my youth some time during my 20's. However, after I began writing professionally last year, I found I had all sorts of energy. I would stay up typing late into the night, and constantly had thoughts and topics about writing racing through my head... My head still kind of works like an on-going blog, but I found my creative mind to be pretty quiet after Dave and I visited D.C. to take care of his brother's affairs upon his early alcoholism-related death. Then my grandmother died the week after, and the events of those late January-early February events left me sick with strep and physically exhausted... In short, I was back to my old, tired, pre-writing self.
Then last night I received an e-mail from the publisher of a magazine to which I am currently contributing requesting I call her. The magazine is a Mississippi Delta-based publication called By U that promotes "good deed doing" for others. Last night, when I called her she told me that a letter I had written for the magazine requesting donations for a little girl with health problems had generated a many contributions from people across the nation. She told me people were touched by my letter in a way that has prompted great monetary contributions. Essentially, God used my writing ability and By U Magazine to bring tremendous blessings to a young girl and her family. (I am attaching the letter below, and if anyone feels moved to contribute, I will find out how you can help.)
After my phone call in which I received specific praise for something I had done, my energy returned and I found myself typing well into the night. Dave and I have jokingly been calling it my "super power", but I realize now what it is... The power of encouragement sparks the "God energy" in each of us. Usually, I sign my e-mails and letters "Namaste'", which loosely translated means the Divine in me, honors the Divine in you. Well, truly, when my publisher honored the Divine in me with specific praise for a job well done, a fire was lit with the spark of encouragement.
So, I say to you on this day, "Namaste'". You have the strength within to do anything that is yours to do. Absolutely anything.
Tatyana's Story:
Dear Compassionate Friend,
Thank you for being a person who will make a difference in the life of a child. Tatyana Anderson, a 5th grade student at Quitman County Elementary School, needs your help. Diagnosed with lupus, a debilitating chronic illness affecting the joints, muscles and most other systems of the body, she finds it difficult to manage many simple tasks. Pain and fatigue are constant companions making every day a challenge for this bright and lively young girl. However, Tatyana does not allow this condition to rule her life. She struggles to attend school and looks to life with the hopes and dreams of a little girl.
While managing lupus has been difficult for Tatyana’s family, it has not been impossible. There were constant doctor’s appointments and daily medical management to keep Tatyana functional and relatively pain-free. The family was getting by. However, in 2007, they were delivered a crushing blow. A doctor’s visit after a symptom the family believed related to lupus revealed deeper trouble. Tatyana had cancer.
Life for this beautiful, young girl with the bright and shining smile has evolved into a twisting, turning walk of faith riddled with one hardship after another. Carolyn Anderson, Tatyana’s mother, strives to provide the best possible care for her child’s medical needs while single-handedly rearing three other children still living at home. Ms. Anderson, a mother of eight and woman of great faith, looks to her church family for support and encouragement.
Tatyana’s life-saving chemo-therapy treatments attacked the cancer cells simultaneously wreaking havoc on her lupus-affected body systems. The medication that currently sustains her has created a build-up of fluid in various parts of her body and dangerously around her heart. She needs an operation to drain the fluid and relieve pressure and swelling. However, the cost of Tatyana’s daily medical care and ongoing cancer treatments alone are exorbitant. In these trying economic times the family is unable to manage the cost of surgery along with all the other expenses of caring for a chronically ill child.
Fortunately for Tatyana’s family, people like you are available and willing to help. While one of us may be unable to shower the family with financial support and blessings, all of us working together can make a difference. Your contribution will provide financial support necessary so Tatyana can receive the surgery she desperately needs while continuing to battle the illness that plagues her daily. Your donation, no matter how big or small will make a lasting impact in the life of a child.
Blessings to you,
Friends of Tatyana Anderson
Wednesday, March 02, 2011
Monday, February 21, 2011
That Feeling
This is my eleventh year teaching in the public school system. I taught preschool for years before that and prayed somehow that God would place me on a softer, easier path than teaching... I kept wanting to be a counselor. I would really make an excellent counselor. I have empathy and compassion sprinkled with a little bit of airy-fairy wisdom. However, the harder I tried to run away from teaching, the harder God shoved me back in with both hands. So, here I am... A teacher.
Tonight I had the privilege of watching a play called "Freak" performed by the students at our local high school... The high school Sarah currently attends... The high school that supported Dan and my entire family during one of the hardest years of my life last year... The only high school in our small town that is fed in part by students from the elementary school in which I teach. So, tonight as I watched the play about bullying and teen suicide, I fought hard to maintain my composure. You see, as the kids were strolling through the school last week to practice, ex-students asked, "Ms. Maxwell, are you coming?"
"Of course I'm coming. I can't wait."
Still, I was stunned at what terrific performances the kids offered, and more than that, I was humbled to have been personally invited by the actors. Not all of the kids were "my" students... (Meaning- they didn't all have special learning needs). But, the kids had me in their classes as the inclusion teacher... Some of them I worked with individually while some just knew me as a quirky, friendly lady who worked at school. But, I was important to them at some level.
One of the brilliant young actors said during her monologue, "I don't mean to be invisible. I just want attention. I just want to be noticed."
And, as I listened to her performing, I thought about her as a sweet, shy little girl. I hope I noticed her enough. However, even more important than the role I played in her life as a child, I am so honored to see her growing into a bright, outgoing young woman. She is the reason I teach. The other young men and women who hug me as they visit the hallways of their old elementary school are the reason I keep doing it even in the face of incredible changes and crazy testing requirements.
The kids who are with me today are going to grow up and do so many things... I'm honored to be with each of them and even more blessed to watch them grow into wonderful, productive, creative students in our community. Maybe that is why I am able to stay optimistic about the future. I'm watching the proof... When I attend a band concert, parade, play or choral concert, I can see the type of young people our school district is producing. They are my friends and neighbors. We are in it together.
On a completely different topic... We got our second call for lungs last night. After scrambling around and sending Dave out to fill the car with gas at midnight, we received a call back saying only one lung was viable. I don't know when it became O.K. with me that this is the path. I didn't want this for my sweet Dan, but I know with a certainty that courses through every cell in my body that God is with us and all is well. Acceptance and surrender are very powerful tools. No need to apologize about the false alarm... If they aren't the lungs God wants Dan to have, we don't want them. The perfect yoga lungs are out there walking around in the world, and they belong to a selfless individual who has chosen to become an organ donor.
Tonight I had the privilege of watching a play called "Freak" performed by the students at our local high school... The high school Sarah currently attends... The high school that supported Dan and my entire family during one of the hardest years of my life last year... The only high school in our small town that is fed in part by students from the elementary school in which I teach. So, tonight as I watched the play about bullying and teen suicide, I fought hard to maintain my composure. You see, as the kids were strolling through the school last week to practice, ex-students asked, "Ms. Maxwell, are you coming?"
"Of course I'm coming. I can't wait."
Still, I was stunned at what terrific performances the kids offered, and more than that, I was humbled to have been personally invited by the actors. Not all of the kids were "my" students... (Meaning- they didn't all have special learning needs). But, the kids had me in their classes as the inclusion teacher... Some of them I worked with individually while some just knew me as a quirky, friendly lady who worked at school. But, I was important to them at some level.
One of the brilliant young actors said during her monologue, "I don't mean to be invisible. I just want attention. I just want to be noticed."
And, as I listened to her performing, I thought about her as a sweet, shy little girl. I hope I noticed her enough. However, even more important than the role I played in her life as a child, I am so honored to see her growing into a bright, outgoing young woman. She is the reason I teach. The other young men and women who hug me as they visit the hallways of their old elementary school are the reason I keep doing it even in the face of incredible changes and crazy testing requirements.
The kids who are with me today are going to grow up and do so many things... I'm honored to be with each of them and even more blessed to watch them grow into wonderful, productive, creative students in our community. Maybe that is why I am able to stay optimistic about the future. I'm watching the proof... When I attend a band concert, parade, play or choral concert, I can see the type of young people our school district is producing. They are my friends and neighbors. We are in it together.
On a completely different topic... We got our second call for lungs last night. After scrambling around and sending Dave out to fill the car with gas at midnight, we received a call back saying only one lung was viable. I don't know when it became O.K. with me that this is the path. I didn't want this for my sweet Dan, but I know with a certainty that courses through every cell in my body that God is with us and all is well. Acceptance and surrender are very powerful tools. No need to apologize about the false alarm... If they aren't the lungs God wants Dan to have, we don't want them. The perfect yoga lungs are out there walking around in the world, and they belong to a selfless individual who has chosen to become an organ donor.
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