Tuesday, May 25, 2010

this one time at band camp...just kidding. This is a ghost post.

I remember the first time I ever saw a ghost.  I dont know that I had ever encountered one before that, maybe I had, and just didnt realize what I was seeing. I will never forget this day. ever.  It was not a dream or a fleeting memory.  It is seared into my mind, I can still, 27 years later, remember every detail, every emotion. I can, without a doubt, say I saw a ghost.

They say Children are a lot more prone to seeing spirits. I am probably one of those who has always attracted them.  My mom has always told me of wierd experiences. Her son, my older brother, has always had wierd experiences.  I guess I grew up just knowing that there was life after death. I have always believed that the Spirit World is all around us, and sometimes we are able to catch a glimpse into it. Maybe there is a veil that separates us. Maybe sometimes that veil is thin and we are able to have experiences. i dont necessarily see them. i HAVE seen them, just few and far between. I feel them.  I hear them.  I experience odd things. I see those I know who have passed on regularly in my dreams. They come to comfort me. They come to give me advice. They come to chat. Maybe I am lucky to have one of those special gifts.  Ghosts dont scare me. They have never scared me. in fact I can remember being a young child, just learning how to read  and going into my brothers room and borrowing his "scary ghost Stories" books. To me they were fascinating, not spooky or scary. I have always known that Ghosts were just a part of my life. Love me, love my ghosts.  It is just a fact .  charles says I am crazy and there is no such things as ghosts.  Well I think he is crazy.  If he saw or experienced just a portion of what I have he would change his mind and apologize all day for having ever doubted me.  But that is one of those agree to disagree things we have.
Anyway, I digress.

I was about 7 years old. We lived in Columbus Ohio. There was nothing terribly unusual about the house we lived in, I cant recall any wierd goings on, or encounters at that particular location.
I was in my room. It was early morning, probably around 530 or 6am.  It wasnt quite the dawn, it was the point of almost there,  to where the room was just light enough to see everything in detail and some color.
I woke up because I had to use the bathroom. i remember laying in my bed, debating whether or not I REALLY had to go and whether or not I REALLY wanted to get up.  As I was laying there, I was looking at the end of my bed, at my closet door, which was closed.  Right before my very eyes a figure appeared.
It was a Native American Man, probably in his 40s or 50s. He had long dark hair. He was in full native clothing, including a large feathered headdress. I would estimate he was about 5'7 or 5'8.
He looked similar to this image, though not as old and his actual clothing wasnt as ornate.
His clothing was dark, probably a dark blue. His headdress was black and white, or greyand white, possibly blue and white.
He wasnt dressed in the stereotypical native garb you see in the old movies, or that my young mind was used to seeing when we would go see Blue Jacket or Tecumseh at the outdoor theaters in chillecothe.
He stood there, still, ramrod straight ,tall and proud. I remember  the feathers on his headdress made a slight whirring, rustling sound though there was no breeze.  the air practically crackled and I felt every hair on my arms and legs stand straight up. My neck tingled, my stomach got the flight or fight butterflies.  My mouth felt sour and my ears were almost buzzing.
I lay in bed, covers up to my nose, not knowing what to do.
He looked at me.  Assessing me. Looking through me.  I dont think he knew I was there. It was as if he was just there, in my dimension, not really seeing what was around. His hand lifted as if to say Hi, but he wasnt looking at me. He was looking past me, to the left of me.
Nothing was said. What seemed an eternity passed, though I know it was probably 5-10 seconds.
Finally my young bladder could take no more, I sat up and called for my mom.  As her footsteps got closer the Ghost disappeared. Just faded away, a vision that had gone dark and faded to nothingness.
My mom opened the door and said "what do you need?".
I told her I had to go to the bathroom and there was an Indian Ghost that was in my room.
She took me to the toilet and asked what was wrong with me. I was 7 years old and I could go to the bathroom on my own. why did I feel the need to call her.?
I told her what I had seen and she asked me if I was sure. She said it was probably a dream and I told her I was awake the whole time.  I was so positive of what I had seen, she no longer questioned me.
It was the last we ever talked about  that particular ghost. She never tried to tell me it was my imagination. She never doubted me.
since that day, I have not seen him again.
I would try and wake up early just to catch another glimpse. I talked out loud to him, trying to convince him to show himself to me again. Nothing.
Maybe it was a lucky fluke that he showed up.  Maybe he showed up regularly when I was asleep, kind of a residual energy. Who knows.
All I know is that I saw him.
To this day I still research Indians of Central Ohio. trying to catch a photograph, maybe figure out who my ghost was, or what tribe.
The picture is of Bill Moose Crowfoot, who was one of the last surviving Wyandot Indians.
This is as close as I have found to the Ghost I saw in my room that night. 

We lived in Columbus Ohio off of Refugee rd, near eastland mall and easthaven Elementary.
any ideas??

All this free time....

I am a TV junkie. ugh, am I ever!
Jeopardy, Simpsons, Family Guy, American dad, Chuck, Dancing with the stars, Glee, House, Bones, Ghost Hunters, Modern family, Mythbusters, American Idol, Community, The Office, 30 Rock, Marriage Ref, Ghost Whisperer, The soup, Tosh.0,  Americas Next Top Model(both current and rerun marathons), snapped, Cold Case Files, and any movies or documentaries that happen to come on and look interesting.
King Tut, Cleopatra, Praying Mantises, History of Gay filmmaking,  Shark week, Bug week...Not to mention a computer full of True Blood and Sex in the City.
Somthing unbelieveable happened this week....my shows are all done.  All of them have the season finale and wont be back until the fall. WHAAAAAA?????  I have watched everything on my DVR. I have watched all my True Blood.  I have watched all my downloaded movies I wanted to see.
What am I going to do??
so you think you can dance doesnt start until Thursday.  Then Wipeout starts end of June.  thats only 2 shows??
My husband works the late afternoon/night shift right now at work.  When i put the kids to bed I relax on the couch and watch a few hours to television to unwind. how what??
I saved the Princesson Mario Brothers Wii and unlocked the secret 9th world.  I have gold medals in all the mario kart races for all the bikes AND the mirror cup.

I suppose I could clean my house.  Catch up on the laundry that has been b****-smacking me in the face every time I go downstairs into the laundry room.  Mostly towels and sheets.  Good think I have a linen closet FULL of extras.
I could walk the dog.
I could exercise.
I could make a menu for the week and write out a shopping list.
I could balance the budget and catch up on our excel spreadsheet.


So I went to the Library and checked out 6 books. That should last me a week.
I had to check them out on Charles card.  I went to give them mine...I have 37 dollars in outstanding fines on my card. 37 DOLLARS!! How is this possible??  Mostly they were books for my kids. Junie b Jones, Thomas, Frances etc. 3 years worth of fines.
I picked out a bunch of girlie books, you know chick lit.  I checked out one of my favorite Jane Austen books, Sense and Sensibility.
I chose my books based purely on gulty pleasure, cover art and colors and titles.
I also picked two that were on my goodreads list.
Next week I will pay my library fine and be able to have my own card back.  I know Charles was embarassed as heck to have some of these titles on his card. as we were walking out I said "Nice girlie books you have there, man."

My choices:
Sense and Sensibility by Jane Austen.
P.S. I love you by cecelia Ahern
The Kept Man by Jami Attenber
The Little Giant of Aberdeen County by tiffany Baker
Very Valentine by Adriana Trigani
Cover girl confidential by Beverly  Bartlett.

I used to read voraciously. I dont know what happened. I could read 4, 5, 6 books a week and not bat and eye.  Now it takes me a week  to read just one book. I wonder if speed reading is like knowing a foreign language.  the less you speak, the more fluency you lose.
I hope not.  I miss my books. I am ready to get back into it, and a bag full of beach reads is just the thing to do it!

Hello my old friends...

Friday, May 21, 2010

My Son Has Special Needs... why is this so hard??

almost 10 years ago my oldest son,Peter, joined our family. A super easy delivery, an absolutely beautiful baby in my arms.
He was a gorgeous 8 1/2 pound baby boy full of vim and vigor.
His Apgar scores were almost perfect. He was pink. He was pretty.
He  had a very serious Heart Defect called Hypoplastic Left Heart Syndrome.
Shortly after his birth he had a stroke, a common side effect of HLHS and was diagnosed with Mild Cerebral Palsy.
He was 3 years old before he could walk.  He didnt talk until he was almost that same age.  he has a weakened left arm and left leg from his stroke.
He has been in Physical and occupational Therapy since he was 1 year old. He was in speech therapy for 2 years.
Fast forward through 3 open heart surgeries to help his body compensate for only having half a heart.
Fast Forward through illness, fatigue, chronic colds, coughs and irritability.
Fast forward to heart failure at the age of 5, in Chattanooga TN while we were on vacation 350 miles from home.
Fast forward through airlift to NC and 90 days waiting in the hospital for a suitable organ, hooked to an IV keeping his deteriorating heart going.
He started Kindergarten in UNC Childrens Hospital, a room on the 7th floor with a teacher named Ms Judy. Tethered constantly to an IV Pole, taken up in a wagon, only able to do 30 minutes a day because he would get so tired.
For a year following his transplant, we were prisoners in our home. He couldnt go to school , with his new heart there was no way he could be around sickness and germs that school would most certainly throw his way.  We couldnt go to church very often because of all the germs, colds, strep, chicken pox etc that goes through the primary like wildfire.
During this time a traveling teacher came to our house once a week to drop off homework papers, and kind of work with peter.
We decided to have him go to school the following year and retake Kindergarten instead of going to first grade. this would give him a chance to socialize, make friends, learn the rules and figure the whole school thing out.
He was a year older than most of his classmates. But it was the perfect decision.

During this time I did not falter. i was fine with everything. I gave Peter everything he needed to recouperate, build his body and mind.  Dr visits every 1-2 months, strict medicine schedule, working with him on everything he needed to be doing physically. i basked in the glow of "oh my goodness, you are so strong, I just dont know how you do it".  I would respond with my know it all war-zone mom voice "oh you do it because you have to."  I was so brave...so courageous...so strong.  I was amazing. I was supermom.

Once he got to 1st and  through the first half of 2nd grade he started Special Education. It was 30 minutes a week, just to give Peter a place to catch up on any school work from the week, or see if he needed any extra help.  Plus without some form of special education classes he could not be on the educational plan and receive physical and occupational therapy at school as well.  Plus it was 30 minutes a week to make sure he was keeping up. No biggie.
then in mid- 2nd grade and the begining of this 3rd grade year his teacher and special education teacher and school psychologist said Peter needed more help. he had learning disabilities and was behind his peers in class. They recommended an hour of special education a day. he would still be in a regular classroom with his friends, but just go see his special ed teacher for an hour during the day. They said things like "Peter learns differently" and "Peter retains information differently" and "Once he gets it he gets it..he is just a little slower in fully grasping the concept". They told me this special education was really to help Peter learn to organize a little better, to really in depth review and help him learn in a way that was more condusive to his mental capabilities.
Want to know what I heard?? YOU...BROKE...YOUR...SON.  Sounds silly, huh? I was supermom. My back was numb from me patting it so many times. Surely Supermom can fix this. Surely MY son didnt need special ed.   I was in denial.  But numbers, testing and schoolwork dont lie. I was heartbroken. I blamed myself.
Was it the aspirin I took during my 2nd trimester??  Was it the Ny-quil I drugged myself with for a week straight before i found out I was even pregnant?  Was it the bottle of coke I used to drink once a week to help settle the morning sickenss stomach during those first few months?? Somehow this was Super moms fault and supermom could fix this. But even this is not something that I can fix. It is something he needs.
Being in Special Ed has helped him. Even I can see that.  But why cant I accept it?? Why is it so hard for me?
Why is it easier for me to revolve my entire world and schedule around him for medical visits, biopsies, hospital stays, therapy etc...but saying he is in special ed is like swallowing a mouthful of coals??
When people tell me "Oh you are so strong" I WANT to say "yeah?/ Want to know that I sob into my pillow every day after they go to school?? Want to know that I feel like an Utter failure because I CANT HELP MY CHILD BE LIKE OTHER KIDS??!!"

He comes out of school with his classmates who are a year younger than he is.  he is the smallest one.
He wears leg braces and a hand brace. He is much slower when it comes to walking and running. He works extra with the PE teacher to work on stamina and endurance and distance.  He is the size of a 6 year old.  i have a hard time remembering he will be 10 in just a few short weeks. In fact his 6 year old brother is now bigger than he is.
None of this bothers me.  he has good friends who love him, help him and are his champions. They defend him and dont let people give him a hard time. I know I dont have to worry about that.
Why do I feel like a failure? Why am I sad, and depressed and ANGRY??  Why is being stretched to the limit with his physical needs so much easier for me than admitting he needs help mentally?/ Why is admitting he has learning disabilities this gut wrenching, harrowing  trial for me??
Why is it so unfair? Why did Peter, my sweet sweet Peter have to be afflicted with this? Has he not gone through enough?

But then I look at him. And he is happy.  He has friends. He has teachers and administrators in that school who ADORE him and hug him every time they see him.  he makes people smile. his teacher told me that Peter makes her smile every single day.  He is the sweetest boy and just warms her heart.
That is his gift.  He can make everyone around him love him.
So is this really HIS trial?? 
No. He could care less if he went to Special Ed or to a room full of crocodiles.  By the end of the day those crocodiles would be buying him toys just because they love him. dont ask me how he does it.
This is MY trial.  This is something I have to get over. This is something I will have to struggle with.  No matter what Peter does and where he goes, he will be loved and helped and will find a way to get it done.
I will be the one bristling and fighting and not wanting to relinquish the control. Slowly I have gotten more used to the idea.
i can see that being in Special ed has been a blessing. It has taught me that I can give up control. I can just accept the fact that there are things I cannot change. There are things I have ZERO CONTROL over.
I can cry, and so, and pray and bargain. The fact is I am the one who needs to get over it.
I have a difficult journey ahead, but all I ask is patience, time and understanding.

My name is Sarah and i have a very special son who has special needs...

***Photo was taken by Rebecca Taylor. These were pictures from a shoot she did for me for peters cover photo  on The donate Life america national newsletter
peter and devans story is page 10..