Tuesday, November 25, 2014

Flashlight Vision

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.

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.


Monday, July 28, 2014

Lesson Learned

There are two kinds of people in the world...  The kinds of people who inspire me and I want to emulate, and the kinds of people who serve as a terrible warning of what I don't want to become.  Now, I say there are "two kinds of people", but really everyone I know falls into both categories at one point or another.  People are inherently flawed.  And, depending upon the day, I have greater tolerance for irascible behavior than others. That being said, I had an "Ah-Ha" moment today after mentally grumbling about an encounter with above noted irascible person.  As much as I might like to sit on my spiritual high horse and label someone else as being judgmental and intolerant, I am called to love people.  I'm called to love all people, not just the lovable.  

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.):
  • 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.
Thus, my experience is varied and hails from multiple perspectives.  In the spirit of the Lion King and remembering who I am, I'd like to take a moment to breathe and write it down for later reference.  In doing what is required, I don't want to forget what I actually believe and know in my heart is good for children.

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


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 is the ratio of a circle's circumference to its diameter.  It's Dave's favorite number.  And, it is what I intended to write about this morning when I logged into my account.  However, instead of waxing philosophical about Pi, I was taunted by its underlying meaning.  I went round and round in circles, never stopping, simply trying to log on.  For the past several months I haven't updated my blog.  Partly, that has been because I have just been out living life instead of writing about it.  The other reasons, though, reared their ugly heads this morning. 

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.


Wednesday, November 21, 2012


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.