In Spite Of It All

I swore I was not going to write this post….I was sure I wouldn’t do it, but here I am.   I don’t even know why I’m doing it, but I can’t seem to stop my fingers from typing the words…I just can’t look forward to, or get into the festivities of, the 4th of July.   There I said it for all the world to see…you know, all three of my readers.   On the 4th of July, families often celebrate Independence Day by hosting or attending a picnic or barbecue and take advantage of the day off and, in some years, a long weekend to gather with relatives.  Decorations (e.g., streamers, balloons, and clothing) are generally colored red, white, and blue, the colors of the American flag.  Parades often are in the morning, while fireworks displays occur in the evening at such places as parks, fairgrounds, or town squares.  Independence Day fireworks are often accompanied by patriotic songs.  A salute of one gun for each state in the United States, called a “salute to the union,” is fired on Independence Day at noon by any capable military base.   And why, because of this document and all of it’s meaning. 

 

It represents the beginning of the creation of a nation…but not for me.

July 4th 1962 Jacqulyne Claudette Nichols was born, the last child of eight children, born to a physicist father and artist mother.  Jackie had both a brilliant analytical mind and was an extremely talented artist.   Jackie was a sensitive, gentle, funny, loving soul too smart for her own good.  She was an awkward gangly child that grew up into an exotic beauty, an original in every sense of the word.

Jackie’s friends would say you could always count on her, for support, for making you laugh, and helping you with whatever need you had.   Jackie’s teachers said she was highly intelligent, phenomenally talented, honest and hard working.   Jackie’s siblings called her Boo Boo Bear, and could always count on her listening ear, and clever responses that laid them out on the floor with laughter.   Everyone adored her although I don’t think she really knew it.  Her sense of justice was extreme and she suffered personally at everyone else’s hardships.  She was a defender of the underdog and not afraid to tell someone who was being unkind to another how that unkindness impacts people.   She was a spiritual being, an avid reader, talented writer, a studier of the worlds religions, a studier of people…and my little sister.

We used to play creative imagination games as children…Jackie and me. One game we played was Phillipe and Pierre…we pretended to be two French artists.  We would set up canvases in the basement,  a mock cafe table in the front yard.  We would go and get my mothers berets, and use elmers glue to affix black yarn to our upper lips.  Then we would go back and forth between the cafe in the front yard… El café Gran Artista and the artist studio in the basement.  Painting wildly, pretending to be impressionists, giving our best french accent to our complements of each others work. Then up to the street cafe for some french bread and cheese to go along with the fine red wine (cranberry juice)…and singing the praises of each others work to all the people in the neighborhood as they passed by.  On occasion some would join us fore a sip of our finely aged cranberry juice …I mean red wine, and we would invite them to the next exhibition of our work.  Days later the kids in the neighborhood would receive their invitation.

We would hang our paintings on the fence in the back yard with a sign on the fence, 

La Mejor Galería

Francesa de Trabajo De Arte

And they came…sometimes they brought their whole family and on occasion some understanding parent would give their child some money to buy a painting.  I think one even paid three dollars for one of our splatters.

On different occasions our imaginary play would take us to Italy during the renasaunce and we would lay on the floor under the coffee table and draw people, pretending to be Michelangelo and the   underside of the coffee table the ceiling of the Sistine Chapel.   We did this at so many different peoples homes when our family had been invited to dinner, or some such occasion that allowed us to sneak away with our pencils.   Once my father got a call from a friend who asked him if it was one of his kids that drew under his coffee table.   At first he thought they were angry for defacing their table but instead his friend said the drawings were great and he was going to seal it so he would always have the drawings there.

I won’t go into the imaginary play we did with our favorite old west characters Mac and Joe, but I am sure you can figure out what apple juice represented.   She was Mac the brains of the outfit and I was Joe the sure shot looking to join Buffalo Bill.  I could go on with the creativity we brought out in each other but my eyes are stinging at the moment.

Jackie was born on the 4th of July and it was so fitting.   As a child and up through my teenage years it seemed to me that the country was celebrating her birthday…and, as they should… it was clear she was destine for greatness.  And for me the one gun salute to the union only makes me think of one thing on this day, the one gun shot Jackie put into her head on June 23, 1985, the day after my birthday, the day of our older sister, Toby’s birthday, who put her shot into her heart October 6, 1980… one week after we were all together for my wedding.  Jackie went back home to Denver with Toby after my wedding, when it came time for Jackie to head back to school in Chicago, Toby begged her not to leave her.  Jackie left… two days later Toby took her own life.  Jackie hung in there OK for two  years after Toby’s suicide, but when our brother Phil took his life in September 1982 Jackie fell further and further down into the spiral of profound sadness.   She made it three more years before she could no longer climb out.  I know this pain, I know it far greater than Jackie…after all she doesn’t have to miss her.  Why have I not joined this bandwagon….let me just say this….Jamie needed her mother… and so here I am.  But there is no declaration of independence from this sorrow.

 

 

Happy Birthday….. Pierre, Mac, Michelangelo………. Jackie!

 

 

Well now that I have had the opportunity to expressed my feelings… here are some things Julie has learned.

1) People choose to leave this world when the pain of living becomes greater than the fear of dying.

2) Given time, love and support the pain of great loss can be eased enough to know that just around the bend you can find and see the beauty that life has to offer.

3) Pain and loss can teach you to appreciate the simple things in life…smell the roses as they say.

4) You realize tears of grief only teach you that great love exsisted.

5) Profound struggles can teach you what your made of and help you recognise your gifts.

6) That the greatest joy in life is that you discover what love is when you give it all away.

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Snapshots of a Song

  

  

           

 

 

 

 

  

 

 

 

I am relatively new to the business of blogging and I can see it is like everything else in life… there is a learning curve… it is in a constant state of refinement… the process teaches you about yourself… ect.  The fact that someone’s blog is so personal  heightens the desire for it to be just right, in order to convey what one truly wants to express and have it understood.  At my age I find that I am in no hurry to create the perfect blog, although I do intend eventually to accomplish this goal  😉

I think the thing that surprised me the most was what I have learned from other bloggers. This particular page is inspired by Some of those whose blog I subscribe to…Kathy at Lake Superior Spirit- http://upwoods.wordpress.com/ Who knows the joys of rocks and playing with friends and labels…  Barbara at  By The Sea http://ingebrita.wordpress.com/who loves deer and walks in the arboretum… And Dear Chris who makes me laugh and cry at  http://buryingjack.com/

Coldplay-Yellow

led zepplelin-The Rain Song

Jason Mraz- Life Is Wonderfu

Kenny Loggins- Long Tailed Cat

Dan Fogelberg- Run For The Roses

Le Anne Womack -I Hope You Dance

 Jack Johnson-Angel

Don mclean-When Love Begins

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When we listen…

There are occurrences in life that challenge a person to the degree that they learn something about themselves and/or life.  And maybe what they learn changes them, or at least how they behave for the rest of their life.  This is not to say those challenges are negative or “bad” , but just that they make you stop and think in a different way.  You know — a light bulb moment.

Jamie got a bladder infection and it caused her creataine to rise.

Dialysis was looming on the horizon.   We have been here before; she was on dialysis for four years before she got her transplant.  Nonetheless she did not want to go back on dialysis nor did she want this gifted kidney to fail.  (What it is like for her to have someone else’s organ in her body is a blog for another time.)

Jamie was scared.  She wrote on her facebook page asking for people to pray for her.  This has been a long time coming, we are not a religious family…we are spiritual though (I think).   I have always told her not to underestimate the power of other people’s prayers…longevity teaches you a few things in this life…. People prayed.                 

She headed to the hospital with her fiancé, Andy, to have her blood work done again.

As she was in the waiting room, a woman walked over to her and took her hand.  Jamie was a little taken aback.  The woman said “I sensed you as soon as you walked into the room”.  She told Jamie, “I never do this but I just feel so compelled to tell you that it is going to be OK and your test today will show great improvement and your knee surgery will go very well also.  I hope you are ok with this.  I don’t want to make you uncomfortable, but please, may we pray together.  Jamie hesitantly said “Sure.”  The woman held tightly onto her hands and they prayed together.  After which the woman told Jamie about her ill mother and her fighting spirit.  They visited a bit more and the woman left.

Jamie went in and gave her blood, as she has done for 28 years.  She and Andy waited.  Not long afterward, the nurse returned with the news…down to 3.7 from 6.7, enough to keep her off THE MACHINE. Possibly it will buy her the time she needs to find a solution to the infection problem.  It will allow her the time to have the knee corrected, which will help… simply because she will be more physically active.  Needless to say she was relieved and filled with joy.

She told me all she could think about was how she felt when the woman was holding her hand…the strange sense of calm…a quiet happiness inside…a restful new confidence.

To me the woman represented all the people who were praying for her and I know people prayed.

As Jamie and Andy were leaving they ran into the woman who was pushing her mother in a wheel chair down the hallway.  Jamie told the woman the good news and they held each other and cried.  They exchanged numbers and parted.

I was waiting for Jamie at her apartment when she called to tell me the entire story.  I was also elated.  It wasn’t long before she was home and we decided to go out to dinner to celebrate.

On the way to the restaurant, I conveyed to Jamie how the woman had also impacted me. I told her that any time I get a sensation to express a feeling to someone, be they stranger or friend, I was always going to do it.  Jamie smiled.

At dinner I interviewed Jamie for a future blog, but mostly just for fun.  I could see and feel that something was different about Jamie.  I had not seen this peaceful calm on her in a long time.

 As we were eating a young girl about 7 or 8 was sitting with her family at the table across from us.  She had a beautiful smile and a sweet energy…my eyes were drawn to her over and over again.  I had my notebook with me so I told Jamie I wanted to draw this little girl a coloring page.  Jamie smiled and rolled her eyes at me.  I drew a rainbow (as a teacher I knew girls love rainbows) and some flowers at the bottom and fluffy clouds hanging in the sky. Then I wrote across the top…

Dear young Lady,

You are beautiful.  Don’t ever let anything stop you from following your dreams.

Follow your Rainbow!

I really didn’t think much of it.  I love children.  I have worked with them in one capasity or another for twenty plus years, so to draw a child a coloring page is not out of the ordinary for me.  But this day seemed to be filled with angels.

When Jamie and I got up to pay the bill, I asked, “should I give it to her, I don’t want to disturb them while they’re eating dinner.”  Jamie said, “You have to follow your heart mom, you know that.”  So I walked over and gave the drawing to the little girl.  I told her I thought she was beautiful and I just wanted to make a coloring page for her.

As I was handing the cashier the money for the check someone tapped on my shoulder.  I turned around and saw the tearful face of the little girls mother.  She said, “My daughter wants to give you a hug.”  So I turned to the little girl and gave her a great big hug.  The little girl wispered “Thank you” ever so quietly in my ear.  Then she ran as fast as she could back to her dad and brother at their table.  But her mother did not, she stood there  looking at me with great big sad eyes and she said,  “I asked my husband when I read what you wrote on the coloring page you made for my daughter, how did she know?  How did she know that this is just what Shannon needed today?”  Then she told me her daughter just got diagnosed with a speech impediment today and that it would be probably years of therapy to correct, if it can be corrected at all.  She told me how sad her daughter was and how the kids at school tease her.  She told me how her daughter said after I read your note to her that she was going to do it and she was never going to let any one stop her from following her dreams.  The mother said thank you over and over again.  But I told her I did nothing…I said ask the angel who prayed with my daughter today when she needed it… maybe she knows who did all this today.  Nonetheless, I hugged her, wished her well and told her not to worry, Shannon is in good hands.

When I turned to leave I saw Jamie had been watching the incounter…She smiled through her tears.  I kissed her on the forhead and I said from this day forward I will always do a thing when my heart tells me so and I won’t ever let anything stop me…thanks to your angel. Jamie smiled sweetly…”me to”.

This was, as Jamie would say…True Story!

 

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Two Birds In The Hand

As I was standing on the deck the other afternoon talking to Rob,
a mother Black Capped chickadee landed on the railing.
 

She was looking rather haggard. 
Pretty soon two fledglings arrived. 
We watched as the momma spotted a wasp that had landed on the deck post. 
She hopped over and snatched that wasp right up.
 

She proceeded to mush it up on the deck rail,
then hopped a foot and a half down the rail to where her fledgling was perched.
To our delight we watched as she stuffed it down the little guys gullet.
The second fledgling spotted this feeding going on and tried to fly over to the deck rail to get his share. 
Unfortunately, he fell short and fluttered down to the deck and behind the barbecue. 
Rob played hero and retrieved him, but I knew it was just an excuse to pick up and hold the chick…he’s such a softy. 
Meanwhile, the momma wanted to see that everything was OK with her baby so she flew over and landed on my head! 
Of course, I wasn’t able to get a picture of that.

 

As I was taking the picture of this new found friend of Rob’s,
the other chick decided he wanted in on the action and flew over,
landing on the camera.  So Rob “retrieved” that one too.
 

 Rob wanted to get a picture of the two of them in one hand,
but to our surprise as soon as the two were together one started picking on the other, sibling rivalry for dominance of this new “nest”. 
That’s when the mother really freaked out and flew to Rob’s hand in response to the cries of the weaker baby. 
It didn’t take long before they all flew off, neither chick worse for the wear.

 

 Black-Capped Chickadee Facts:

The Black-Capped Chickadee hides seeds and other food items that it gathers to eat later. Each item is placed in a different spot and the chickadee can remember thousands of hiding places.

Every autumn Black-capped Chickadees allow brain neurons containing old information to die, replacing them with new neurons so they can adapt to changes in their social flocks and environment even with their tiny brains.

Chickadee calls are complex and language-like, communicating information on identity and recognition of other flocks as well as predator alarms and contact calls. The more dee notes in a chickadee-dee-dee call, the higher the threat level.

Winter flocks with chickadees serving as the nucleus contain mated chickadee pairs and non-breeders, but generally not the offspring of the adult pairs within that flock. Other species that associate with chickadee flocks include nuthatches, woodpeckers, kinglets, creepers, warblers and vireos.

Most birds that associate with chickadee flocks respond to chickadee alarm calls, even when their own species doesn’t have a similar alarm call.

There is a dominance hierarchy within flocks. Some birds are “winter floaters” that don’t belong to a single flock—these individuals may have a different rank within each flock they spend time in.

Even when temperatures are far below zero, chickadees virtually always sleep in their own individual cavities. In rotten wood, they can excavate nesting and roosting holes entirely on their own.

Because small songbirds migrating through an unfamiliar area often associate with chickadee flocks, watching and listening for chickadee flocks during spring and fall can often alert birders to the presence of interesting migrants

The oldest known wild chickadee lived to be 12 years and 5 months old.

Facts taken from The Cornell Lab of Ornithology

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Love Inept, Remains

Love Inept,  Remains

 

Casement double  pain, sheered and clear.
I veer my head away, don’t foretaste me.
This affliction is my own, I confess it.
Beget it forth in aspirant affection,
spring forth from a common desire.
 
Transom tall, distressed, eminently far reaching.
Glance misplaced to shield what can’t befall,
but has.
Custody I take, to watch the wounds,
my useless hands to heal.
 
Through this tiny aperture,
I will offer it, my all, for the obsession of
my undying ardor commands me so.

 

 This poem was written about a time that Jamie was in the hospital for yet another surgery.  It would be her sixth major operation, and she was only two years old.  The surgeons were doing their morning rounds, checking on Jamie’s stability after this latest 10 hour surgery.  

Jamie’s room had a window with sheer curtains which I had pulled aside so I could sit on the ledge and look out.  As I sat there staring out the window, not looking at anything in particular really — just staring, tears started streaming down my face.  I continued to divert my gaze out the window so that the doctors would not see the emotional release that I was experiencing. 

 At first they didn’t notice me, but soon one of the surgeons did.  He came over to me and asked me why I was crying, the surgery was a victory by the standards of the day.  He was a great surgeon and he had just done a fantastic job with my daughter…but I didn’t want anyone to look at me as I cried.  How could I explain how this feels to anyone?  The operation had been successful, and yet the overwhelming feeling inside of me was that of total lack of ability to really do anything significant to take away the pain my daughter was experiencing and would continue to experience for the rest of her life.  I had no words of explanation for my tears, only the feelings… this is my daughter, a precious life and I am powerless to help.

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Soya Smiled

He came into my life when Jamie was two months old and still in the hospital.  She was in an infant ward that had eight cribs — hers was the last crib to the left.  As you might imagine, I was with her pretty much twenty four hours a day, seven days a week.  One day they brought a little baby boy into the ward.  He had an abundance of jet- black hair with eyes to match.  The deep blackness of his eyes was so dark the pupils were barely discernable.  It was like looking into a deep, yet empty, well.  This baby was deformed in every respect.  His arms, legs, his tiny little face, massive ears, and torso were all deformed, and yet there was something about him that was extremely attractive and alluring.

The next morning, the parents of the baby arrived along with a large group of relatives.  They were all huddled together as if they were bound together by some unseen net, one that provided safety from a difficult world, with a weave that held each family member tightly, one to the other.  They were clearly people in poverty.  Their clothing was tattered and soiled.  All the women wore floor length skirts made of highly woven material and shawls about their shoulders. The men had on long pullover shirts and lose woven jackets.  They all wore thick worn out sandals.  They were a diminutive and dark skinned people and I could smell them across the ward.  What I learned from the nurses was that they were Vietnamese boat people. They were not in a situation where they could keep this ill baby because of their extreme poverty and having just arrived in this country with no place to live.

They returned the next morning still wearing the same cloths.  There were 6 or 7 of them, tears were streaming down their faces, but they didn’t make a sound.  I could see that the mother and father were in the middle, as the rest of the group was huddled around them, and they were very young.  The sadness on this young couples face was so profound and I could not stop looking at the young mom’s face.  I wanted to reach out and hold her and tell her it would be ok, but even I, a 23-year-old new mom of a child born with severe birth defects, knew that was a lie.  They went over and looked at their baby boy lying in a crib in a foreign hospital in a strange and new land.  They named him, left and never returned. That was the beginning of the life of Soya Bock.

So day after day the tiny boy lay in his crib and almost no one talked to him or touched him.  The only touch he received was when the nurses and doctors were taking him for tests, drawing his blood, or trying to feed him.  Every day I would pass by this little baby boy, look at him and talk to him.  Days and weeks would go by and nobody was touching this infant.  No one was showing love to this baby.  Yet Jamie, in her own crib, was shown plenty of love.   All of the nurses loved her, bought clothing and toys for her, and put her in pretty little dresses.  People came to visit and hold and love her — nurses, doctors, and aids, as well as family and friends.

But nobody touched this beautiful baby boy Soya Bock.  It bothered me immensely as I passed his crib each day.  So one day I asked the nurse if I could feed him, in view of the fact that they were having a very difficult time getting him to eat.  I repeatedly asked, “Could I try?  May I feed him?”  They repeatedly said, “No, you really need to deal with your own daughter and you would have to wash your hands, put on a gown and a mask, then do it again to go back to your own child.”   Well, I was obsessed and stopped at the end of his crib every day and talk to him.  I told him how cute he was as I was hoping to see him smile, or look over, or just move in any way — anything.   I would sneak my hand in-between the railing of his crib and tickle his toes even though I was not supposed to touch him.   I talked to him every day.  Finally after they watched me talking to him for two weeks they gave in and said “Fine, you can feed him.”   I washed my hands, put on a gown and mask and they got him for me.  They laid him in my lap so I could try to feed him.  By this point he had not eaten for many days.

I sat in the rocking chair amid the wafting antiseptic smell, holding this little angel.  He was so deformed, and yet, he was adorable. I closely inspected his gigantic ears, crooked eyes, the strangely misshapen eyebrows, his distorted lips, and malformed chest, everything about this little baby was so frail.   As I rocked him I looked over at Jamie in her crib.  She was asleep which may be part of the reason they allowed me to hold him at this time.  I continued rocking him and they brought a bottle for feeding.  I talked to him the same way I would talk to Jamie.  You know, saying silly little things and using that voice that mommy’s use with their children, which is so annoying to everyone except the mommy.  “Oh Soya, such a cute baby, what are you doing in there, I know there is someone in there.  Come out and play.”

With this tiny boy in my arms, I fed him, and he started sucking on that bottle with vengeance.  It was funny because the nurses were acting like they were not paying attention, but I could see them peeking over and whispering to each other.  They saw that while the bottle was only 3 inches long and looked like a syringe, he sucked the whole thing down.  That was a first.   And I carried on rocking him, rubbing my thumb gently across his forehead.  Prior to this his eyes always looked straight ahead and empty, his face expressionless.   But after I fed him, rocked him, and talked to him his eyes started to move and he looked up at me.   I do not care what anyone says, I know that baby smiled at me.  I said to the nurse, “Look he’s smiling.”  She came over and he was looking at my face and smiling at me. She said, “Sure enough, sure enough Soya, well good for you little Soya boy”.  Then she went on doing what nurses do, and spoke from across the room, “Good job Soya.”  Then she told the other nurse on duty that Soya can move his eyes.  It was the first time anyone had seen him do that.  So they let me hold him and rock him and feed him until we (Jamie and I) went home, which was another six weeks later.  During that time Soya Bock, smiled at me, cooed, looked around and tried to move his little hands and fingers.  But every time I put him back in his crib he would just lay there and stair out into space.

Years later when Jamie was a teenager I told her about him.  She asked me what happened to him, and I told her that I use to go see him when she had clinic appointments at Children’s hospital.  He developed really complicated heart problems because his heart was deformed as much as seemingly the rest of his entire body.  He was in ICU for another 2 months before he finally died.  During that time I had asked the nurses whether any one was holding him at feeding time.  I knew they had a program there called the grandparent, aunt and uncle program.  It was designed for people who volunteer to come in and rock and hold babies.  I asked them to get him in the program when I left — he needed to be touched, he needed to be talked to.  I asked around if that had been done for him — he had no advocate.  And because he had no advocate it never happened.  So Soya had one month of one person in this life holding him, rocking him and talking to him, tickling his little feet and loving him. That is pretty much all he had in this world during his short little existence.  You know nurses can’t really devote so much to one baby, they don’t have time for it.  They are tremendously busy running from one baby to the next.  He died about 6 weeks after Jamie was released from the hospital.  I think about him a great deal still.  I thought about adopting him but everybody advised me against it, because as someone told me, “Ok, so you are going to deal with your own child’s issues and then you are going to take Soya home too?  You will have two children with extremely unique and difficult medical circumstances to manage.  Jamie needs everything you have to give.”  It was also the doctors and nurses that counseled in opposition to the concept saying, “You need to put your energy into you own child.”

He was beautiful to me — as deformed as he was from head to toe, he was beautiful to me.  I will never forget his name or his smile.   I also thought about how hard it must have been for his parents and his family.  People in that kind of situation and all they can do is walk away.  They gave him up out of love.  They gave him up out of hope that he could have a life and maybe some American family of means could take him.  They knew there was nothing they could do for him and the only thing they could give him was a name, Soya Bock.

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We Tell Stories…

This is a very fun page where you can co write your own fairy tale. The writers on this page are very creative, but the fun part was having a custom fairy tale written for my daughter…she loved it and she is 27 years old.

http://wetellstories.co.uk/stories/week3/

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