Saturday, December 21, 2013

The Echoes of the South. I'm Overthinking Things Again.

This is not a post about Phil Robertson.  
This is not a post of homosexuality.  
This is a post of what I've been overthinking since Phil Robertson's interview came out.  

In my mind, sometimes after I sign my name, I want to write "Overthinking Things Since 1980."  

See, I was born in 1979. I give myself a year for eating, pooping, sleeping, repeating.  Then I believe the overthinking (or as my therapist likes to call it "obsessing") began.  I probably overthought the toys I was playing with, psychologically tried to figure out why I preferred cuddling with one parent more than another, or tried to figure out the reason my brother and I loved each other but fought so much.  

When something piques my interest, I obsess.  I take it apart, make decisions about each piece, then put the pieces back together in a way that gives me peace about it.  This way of thinking is hard, interesting, fun, frustrating, exhausting, reassuring in its finished product. 

Phil's interview, and the resulting explosion, did that for me.  
First, it was the homosexuality issue.  That was knee-jerk for me.  

After my husband, there are a handful of people that I feel are truly loyal to me.  They love me the way I am and would encourage me to change only if the result was a more peaceful and healthy me....not because they think the change would benefit them or their ideals.  Two of those people are gay.  I am loyal to them as they are loyal to me, but this isn't a post of homosexuality.  

Phil talks about race in the interview.  After the knee-jerk reaction to homosexuality, it was those statements that I obsessed over....well, no.  That is wrong.  I thought about his statements.  I obsessed over the echoes of that time period in the south and how they have personally affected me, my family, and my racism.  

Yes, I'm a racist.  
But lets go back a bit.  

I was born in a small Cajun town in South Central-ish Louisiana named Eunice.  Look it up if you wish.   
My family was not overly racist (no KKK that I know of) but I heard the terms "nigger" and "colored" at least occasionally from extended family.  I was friendly with black kids on my street but I didn't invite them into my home.  They didn't spend the night.  They weren't invited to my parties.  It would have been an issue if I had dated a black boy. It was a general attitude of superiority and otherness. 

I graduated High School in 1997.  Our Prom and Homecoming Dances were segregated.  These were not school sponsored dances so it was easy to say This is how it has always been. or They wouldn't like our music and we wouldn't like their's. or They eat different foods then we do.  

Those brave enough would say Their shit looks cheap.  I don't want to take pictures with their cheap decorations. or Hell no, I don't want to hang out with niggers.

The Homecoming Court was sponsored by the school.  It was based on the race demographics of the school.  The school was roughly 40% black and 60% white.  So the Court had 4 black girls and 6 white girls.  With the ballot, you chose no more, no less than that ratio.  If you liked 5 black girls and 5 white girls, too bad.  

So for me, the overthinking began like this:  What if Phil is right and those black folk he was picking cotton with were truly happy? Does that change anything for the black folk of today?  Does that change anything for the white folk of today?  What does it change for me?  

What if he is wrong?  What if what he took for happiness was fake happiness?  What if the blacks in the fields were faking happiness because they didn't want to be lynched????  Or what if they had simply acknowledged their lot in life and because it could not be changed, did the best they could with it, finding solace in song, smiles, and worshiping the same God, reading the same Bible, that the whites worshiped and read.  
The whites that felt you were subhuman.   

Or if their own life was not in danger, what if they knew someone that had been killed for being black.  Even if out-and-out slavery was over, if your mom had been a slave, would you have been comfortable with your new freedom?  (Not true freedom, mind you.  Not voting freedom, home ownership freedom, or the freedom that comes from knowing if you are murdered and your murderer is white, your murderer will be prosecuted.)  You would maybe be happy that your life was a little bit better than your mother's and you may have a feeling of progress, both made and occurring, but would you truly be happy?  Would the echoes of the past haunt you?  Does Phil feel haunted and therefore convinces himself of things that are not true? 

For me, as a white woman from the south, I see and name those echoes as a way of overcoming them:

When my son asks for the black kid on our street to spend the night, I always hesitate in a way I don't hesitate with white kids.  There is no conscious reason, just a hesitation.  I shake it out of my head and say, "Yes, he can.  Make sure you give him the invitation to your birthday party." 

When my daughter (3rd grade) told me her boyfriend was black, I felt sick for a moment.  What if she married him?  What would my family think??  What would his family think?  Would they be totally different from us? I shake it out of my head.  "Holly, get a hold of yourself.  This is not who you want to be.  There is no logic to your fear.  GET.A.HOLD.OF.YOURSELF." 

I fight my self-confirming biases.  I fight to remember that there are kind, mean, polite, rude, lazy, hardworking, violent, peaceful people in all races.  I wish to judge people by their character, and I work on that.  

But the echo of my racism remains.   

This is what generations should do.  We should try to improve.  Things get better, and we fight what we were taught when we know the teachings were wrong.  

People tell me that if I'm going to be a "tree-hugging liberal atheist" and don't like the South, I should leave. It seems like change, of any kind (sometimes even the most simple, common sense things) is viewed with suspicion or downright hatred here.  It saddens me.

I like the South in so many ways.  It is the only home I've ever known. I don't like the history but I can't change the past. I can only change myself and what I teach my kids.

Still, I probably will move one day. (How will I ever stop saying "Y'all?) 

 I will move to a place where echoes of hatred are so far removed from the current generation, you can barely hear them at all. 

(Friends have given me suggestions of places to move.  It certainly doesn't hurt that the types of places where racism is scarce are also known for better education, both Special and General, more proactive doctors for kids with special needs,  and healthier in general.)

Thursday, October 17, 2013

Dead Horses and Other Weighty Lyrics

 I choose preferred music in two ways:  I either like the sound or I like the lyrics. Often enough, I like the sound and the lyrics and that is the recipe for a favorite song forever and ever. 

I play favorite songs often. Many times, I search out those songs because I need it at the moment.
For a few months now, I hit repeat:

I'm always dragging that horse around....
 Tonight I'm gonna bury that horse in the ground......
But I like to keep some things to myself
I like to keep my issues drawn
It's always darkest before the dawn.
-"Shake It Out" Florence and the Machine
I can be cruel
I don't know why
Why can't my balloon stay up in a perfectly windy sky
-"Cruel" Tori Amos
I urge myself to bury my dead horses.  They have become so heavy and cumbersome over the years.
But I honestly don't know how to even begin the hole in the ground. 

My constant dead horses include near paralyzing fear of losing everyone I love, a persistent battle with depression, guilt over too many things to list, and the struggle to be who I am naturally, something I can't change, knowing all the while that who I am is a disappointment to many people that love me.
The heaviest horse comes and goes.  Appearing and disappearing on my shoulders.  He is anger.  Sickening anger that consumes me.  It is one of my issues that I keep drawn to myself because it is not the legacy I want to leave.  Angry is not a word I want to follow my memory. 
I don't recall carrying that particular horse before the day my mom died, but I still wonder if he has always been there.  Was I an angry child?  I have been called a "willful" and "not easy" child.
 But maybe I began carrying that horse the moment I knelt above her and watched her take her last breath.  I certainly gained the fearful horse at that moment.  
I keep a fairly tight leash but when the anger erodes my leash, there is a spectacular display of fireworks.  It burns me and my loved ones without regard for damages.  I become cruel, my tongue a weapon.  Another undesirable word I never want to follow my memory.  
Before the most recent repeats:
Where did I go wrong? I lost a friend
Somewhere along in the bitterness
-"How to Save a Life" The Fray

You can get addicted to a certain kind of sadness
Like resignation to the end, always the end
-"Somebody I Used To Know" Goyte
I can't speak for most women, but I have always preferred to have one or two "best friends," for lack of a more mature phrase.  Another girl/woman who I could confide in, be there for, love.  I have had some amazing best friends, ever since elementary school.  Inevitably though, something goes wrong. 
Well, maybe not exactly wrong...perhaps some ended just because growth in opposite directions is natural. 
But others definitely went wrong.  After the age of 16, it was almost always due to my anger and cruelty.  I hurt the ones I loved the most.  Then the tides turned and some hurt me before I could hurt them.  
It is unfortunate because no matter how it ends, no matter whose fault, even if I sub-consciously sabotaged the relationship, it all feeds into my fears, bitterness, and by extension, anger. 
The most unfortunate aspect of it all is that when I become close to someone new, I am too guarded, walled up, and give them only enough of myself as to be available and caring but still avoid hurt.  I think of it as not giving them power over me.   They do not have the ammunition needed to hurt me.  Closed, hard-hearted, guarded....even more words I do not my wish for my legacy. 

The one I repeat and want to believe:
You show me how to see
That nothing is whole and nothing is broken 
-"Sanctuary" Utada
The concept of that rolls in my head.  I want it to be true.  That I am neither whole nor broken.  That I just am.  That my life, with its dead horses, just is. 
So I no longer keep these issues to myself in the hope that what I actually leave behind meshes with what I wish to leave behind. 

Friday, September 27, 2013

A Letter to a Middle Aged 7th Grade Teacher

Ms. ______,
This letter will not be polite and I do not apologize for my anger.
I strive to raise moralistic, responsible, friendly, and kind children.  Beside the obvious reason that it is the right thing to do, my youngest child's life depends on his older siblings having those qualities.  You see, they will likely be the only caregivers he has when my husband and I leave this earth.  My youngest child has Down syndrome and at 5, functions moderately well but if his level of functioning continues at the same rate, it is a real possibility that he will not live independently.  I deal in statistics often, real possibilities are to be prepared for. 
My youngest child has an IEP at his school.  His eligibility ruling for SPED was Mental Retardation.  If he ever has an IQ test, his IQ will likely fall in the Mental Retardation range.  Rosa's Law has changed much of the terminology in government documents because the President, rightfully, listened to advocates (self and family) who said "retardation" has an extremely negative connotation for those who live with learning disorders, developmental delays, and medical diagnoses.  The word carries the weight of genocide, mental institutions, civil rights violations, and bullying.  For those of us that love and have compassion in our hearts for how words can puncture self-esteem and cause pain, we do not look for the banning of a word, just for others to have the common decency not to use it.  To CARE about feelings....especially of children.

I understand another parent has already contacted you about your use of the word "retard."  I'm assuming you either do not care that it is offensive, or it is such a habit for you, that you cannot stop.  I wonder what other inappropriate things you say in front of your students. 

With the very little respect that I still have for you, I say GROW UP!  You are not your students.  You are not 13.  Speak like a grown woman.  Speak with less offensive terms.  Speak with respect and kindness. 
Don't give me a silly, immature excuse that you weren't calling someone a "retard", much less a person with a label of mental retardation, because that is not the point. The point is: Saying that a silly, gross, or accidental deed is retarded is the same as saying it is similar to what a person WITH mental retardation would do.   That showing an empty mouth void of gum is equivalent to scoring two standard deviations below the mean of an IQ test.  That it is equivalent to being slowed in development or progress.  

Shame on you for setting such a low example for impressionable youth who already bully and show a distinct lack of kindness and empathy toward others.

Let me give you a scenario:  You have a child with a learning disorder in your class.  Or perhaps a child that is a little socially awkward.  Outside of your classroom, in the hallways, the other children look at him with disgust and say, "Retard", "You're so retarded" or "That's so retarded" when he drops a pencil.  This bullying, of course, hurts him.  Then he steps in your class and expects safety.  But no, even the teacher says the word.  You are not talking about him personally, but you used the same offensive term as every other unkind 13 year old.  Again, GROW UP.
You can assume I'm the word police.  I don't care.  If you cannot control your mouth, please let me know and I will transfer my son from your class in a heartbeat.  He has already heard his brother referred to as a retard.  The word cuts into him just as it does me.  If you will treat him any differently due to him telling me how your words hurt, let me know and I will gladly transfer him to a more mature-speaking teacher.  (I wouldn't even tell anyone if you admitted to that.) 
I do not need nor want an apology.  I demand improvement and respect for those that are often not able to demand respect for themselves. Respect their history and the struggles they face daily. Respect that the word, to thousands of ears, sounds just like other slurs that I won't even lower myself to type.  It is corrosive and divisive.  If you need better, less offensive words, I can buy you a thesaurus.  They are not expensive.  Seriously, let me know.
To the administration I have copied on this email, feel free to remove Ms. ____'s name and share this with all your teachers.  Perhaps sensitivity training.  I can come and give a talk to them if my point was not clear enough.  If you need more information on why the word is offensive and considered a slur (as opposed to slang), I can certainly provide that as well.  For now, this one will do:

Angrily and fed up,
Holly Fedele

Saturday, September 14, 2013

Moments of Hurt

The Background

I have never written birth stories for any of my kids, and I don't know if I ever will.  This post is not Trent's birth story but it will contain moments from it.

I did not know that Trent had Down syndrome before he was born.  My c-section, to be the third one, was scheduled for a few days in the future but I went into labor on my own.  

As the team prepared me for surgery, it was discovered that Trent was in distress.  My husband, who had watched the first two c-sections, knew the procedure of it fairly well.  This one, however, was different.  He later told me how horrified he was by it all.  They rushed with the cutting and the delivering in order to save Trent.  They were so rough while pulling him out, my body was being lifted off the table.  The doctor was elbows in.

Trent was quickly whisked away and our nightmare began.  He was transferred to a larger hospital out of state.  I had no chance to recover or rest from the c-section and my incision became infected.  It oozed puss, blood, and clear liquids.  The top layers would break open.  Dissolvable stitches kept coming out instead of dissolving.  I was wearing feminine pads against my belly. 

Between driving out of state to spend time with Trent and trying to treat my own infection, I was pumping breast milk in order to maintain my supply. Giving Trent my milk, with all its nutrients and antibiotics, via his feeding tube was a top priority for me.  It was one aspect of my life that I felt I could control. I would pump consistently throughout the day and set my alarm to wake up and pump during the night.

At two months old, Trent had open heart surgery.  Up until that time, we were told he would not gain weight due to his heart condition.  We were told he would begin growing like a weed as soon as his heart was fixed.  It didn't happen.

A little more than a week after his surgery, he began vomiting and having diarrhea.  I took him to the doctor and was told to do the clear eletrolyte regimen.  He was fine as long as he drank the electrolyte drink but as soon as I gave him breast milk or the high calorie formula we were substituting with, he went back to being violently ill.  I took him to the ER when he became ashen and extremely lethargic.  He was placed on a helicopter and sent back to the hospital out of state where his surgery had been performed.

The Moment of Hurt
When my husband and I got to the hospital in Louisiana, the ER doctor was waiting for us.  She was young, pretty, and scowling at us.  She looked me in the eye and asked, 

"Have you been feeding your child?"  
Her tone was accusatory. 

Time seemed to stop. The hurt in my heart was immediate.  
Part of me raged. Part of me wanted to verbally, if not physically attack her. If every ounce of strength in my body had not been devoted to pumping, healing my body, worrying constantly, and loving my baby, I would have managed something other a low and weak "yes."  

After my answer, I walked away from her and my usual defense mechanism took hold. I went numb. I went into survival mode, where my emotions become stunted and all processes become automatic. 

Within a few days, it was discovered that Trent had reducing substances in his stool, which led to a diagnosis of Malabsorption Syndrome. The diagnosis cleared any suspicions that I had been starving my precious baby.  He was placed on an Amino Acid formula and he began healing and growing. 

That young, pretty, scowling doctor?

To her, I would like to say:

I know you have seen horrors in the course of your job. 
I know there are parents who are capable of starving their child, especially a child with a lifelong diagnosis. 
I know Trent's condition looked suspicious when he arrived.
I know that you weren't aware that my incision was infected, or that I was so obsessed with giving Trent breast milk that when my supply took a dive for a week, I "massaged" my breasts so hard that I left bruise marks on them.  
You weren't aware that I wept when I pumped but only a produced a few ounces.  
You did not know that my dear husband encouraged me to skip pumping sessions at night so that I could get more sleep, but I refused for fear of losing my supply. 
You did not know that my husband gently swabbed my incision several times a day with iodine as the worry etched his face with deep lines. 
You certainly did not that he and I were falling in love with each other all over again because we were going through hell together, and that we found our strongest faith and comfort in each other. 

There was no way you could have known that if Trent died, I feared I would die along with him. 

There was only one thing you could, and should have, known:
Your question, with the accusation of it so clear, had the ability to cut me to the core.  

You should have known that no matter how many people praised me for what they saw as courage; no matter how many people told me they admired me, your words had the power to break all of that in one moment of hurt.  

I wish you had held your tongue until the tests had been ran. 

I wish you had considered for one damn moment that if I was the kind of mother that loved her child with all her heart and burned with the desire for him to live and thrive, your words would be poison to everything inside of me.  

I wish you had checked up on his case a few days later and came to our room. 
I didn't want or need an apology (though it would have been nice), but I craved validation. 

You could have said,  "I'm glad the Malabsorption Syndrome was discovered in time and he is now recovering." 

That would have been enough and I would have forgiven you.  

But you didn't.  I never saw you again. 

Every so often, I remember that moment.  I feel rage,
then I feel hurt.  

Tuesday, March 19, 2013

Trenter Trenter Chicken Dinner

March 21st is World Down Syndrome Day.  
Because 3/21 symbolizes the three chromosomes on the 21st chromosome. 

I usually celebrate with Blue and Yellow cupcakes brought to Trent's class, blue and yellow bracelets on my wrist, and lots of Facebook posting. I make memes.

This year, the International Down Syndrome Coalition (IDSC), a grass-roots non-profit group, has challenged bloggers to tell people about our loved ones with Down syndrome.  This is an easy challenge for me, as I love talking about Trent.  At the end of this post, please watch the video created by IDSC.

Trent-Man, Silly Boy, Mr. Trent
Stink Butt, Sunshine, My Big Boy
 Trenter Trenter Chicken Dinner

Those are the names you will hear in this house applied to Trent.  His nicknames.  

But Trent is so much more than just a chicken dinner.

Trent is a son.

He is a brother to two siblings.

He is a nephew to many aunts and uncles.

He is a grandchild.  

He is a best friend..."Heyyyy Mimmy"  (Hey Timmy.)

He is a most anything. 

He is a lip syncer...mostly hip hop. 

He is a hugger....tightly and frequently. 

He is a kisser...puckered and on the lips to perfect strangers. 

He is a football player....just say "down, set, hut" and watch what he can do. Or throw the football back and forth with him.

He is a clothes folder...quite well....snapping the wrinkles out.  He attempts to put all the folded clothes in the towel closet in the hall.

He is his accomplishments and his delays.

He is a Special Olympics Young Athlete.  

He is the stereotypical child with Down syndrome, as in almost always happy, eager to please, easy to parent.

He is a little pig when eating...which is amazing considering the sensory issues he used to have.

He is the baby I couldn't hold for days after his birth.

He is a fitful sleeper...kicking, covering and uncovering, sitting up and crashing down.  

He is a student...and soon to be kindergartener.

He is a runner.

He is a teacher.

He is a survivor of PPHN, a VSD,  an ASD, a PDA, failure to thrive, and malabsorption syndrome.

He is the center of attention...loving the spotlight.

He is the soft-hearted child that cries when other children cry.

He is a thumb-sucker.

He is the blessing I never knew I wanted or needed.

He is Down syndrome...not in the politically incorrect way of saying it....but in the way that he would not be the same child if he didn't have Down syndrome.  

Which is why I celebrate Down syndrome, not just on World Down Syndrome Day, but every day.  
It is my incredible, beautiful, funny, loving son.  

Tuesday, February 5, 2013

Great Expectations?

Since Trent's birth, I've worried about him.  More so than my other kids.  His diagnosis makes it impossible not to worry.

I worry about normal things, and I worry about silly things.

When he was a mere two years old, I worried for months about his future job aspects.  So I told myself that I would treat him no different than my other kids, but....

If my other kids spend the rest of their lives bagging groceries, I would consider that too little ambition.  
It would not be okay.  
So then I freaked out.  Is it okay for Trent to bag groceries for the rest of his life?  
Should I expect more for him just like the other kids?  Or, when and if the time comes, do I accept that bagging groceries makes him happy and is the best he can do?
Oh, the headaches and tears these thoughts brought me.  
And he was only two years old!

Really, the "future job" worry is just a larger scale of thoughts that nag me.  How do I balance my expectations for Trent? 

For example, his speech will likely always be unclear.  Do we continue with therapy indefinitely or do I accept a plateau?  
As his mom, do I know when we have reached a plateau? 
Or do I expect the therapist to tell me?  

Where do I draw the line between helping him reach achievements and trying to make him perfect/"normal"?  Is there a clear place, on the spectrum, that this imaginary line occurs?  

I have no answers.

Luckily for me, Trent makes it easy to take it day by day.  To just be his mom.  To rejoice in his achievements.  

(But I would still like answers.)