Tuesday, February 25, 2014

Donna Day 2014

So here we are at Donna Day 2014

Never heard of Donna? PLEASE do yourself a favor and read her story here. Her mother, Mary Tyler Mom, chronicled her story a few years back for a September series on childhood cancer. It was HER story that moved me to share my own child’s story~ different in every way except 1~ just like MTM I no longer get to parent one of my children…….that child died.

To those who do not know her~ Donna is just an ordinary girl who developed a rare terminal brain cancer and it killed her. I can assure you Donna IS VERY FAR from ordinary. You need only read her story to know this truth.

Then the real joy and amazement begins….you read about how her mother has parented Donna in the only way she can~ by sharing her story and with it changing the world.  Powerful stuff right there yo. Powerful stuff indeed.

I don’t come at you with a ton of facts and figures. I don’t come t you asking you to do anything you can’t afford.

What I come at you with is one small question…………what would YOU do if it happened to you?

It’s a VERY uncomfortable and painful thing to think about……planning the funeral for your very own child~ believe you me: I KNOW.

For the MILLIONS of children diagnosed every year with cancer the choice to ‘look away’ is snatched from their family and from them. Once you move to Cancerville~ you might change houses~ but you never get to leave the neighborhood. This I learned from Donna.

Today, quite frankly, it would be easier for me to look away. It would be quite easy for me to be swept up in my own life issues~ some more pressing than others. It would be quite easy to say I am too tired, too stressed, too sad, too overwhelmed, too ANYTHING to think about this sensitive and very painful subject.

But there is one reason I cannot look away…..and that reason is Donna.

I don’t LIKE to think about when I planned my own child’s funeral. I cannot even BEGIN to imagine what it was like for the Mary Tyler Family to bear witness to her 31 months of treatment, to accept in the end that Donna would not survive, to even find the strength to carry on……. much less do what they have done.

They have founded a charity in her name (www.donnasgoodthings.org). 

They have teamed with St. Baldrick’s to advocate for and FUND childhood cancer research (http://www.stbaldricks.org/events/mypage/6969/2014). 

THEY have taken the tragedy of beautiful Donna’s death and used it to change the world.
If they can do that  then by gods I will look this fear, emotion, tragedy and triumph RIGHT IN THE FACE.

I will scream from the rooftops that we MUST do better.
I will remember what it is like to plan my child’s funeral.
I will face the fear that comes with knowing at any time one of my living children could be diagnosed.
I will cry.
I will write.
I will share.
I will donate.

BECAUSE WE MUST DO BETTER. THESE CHILDREN DESERVE BETTER.

They print more money everyday…..but there will never, ever be another Donna Quirke-Hornik. Her family will NEVER be the same without her.

So I ask you again: what would YOU do if it happened to YOU?

Please read, share, and donate if you can.

Please lift the Mary Tyler Family up in your thoughts, prayers, meditations……whatever it is you do, please take a moment to think of them.

At the end of the day……..even when we are *celebrating* the children we no longer get to parent, that precious child is still dead. Emotions are on overload.

MTM I love you.

Thank you for sharing Donna with me and for allowing me to share in the beautiful gift of her legacy.

Love and light,

G

Saturday, January 4, 2014

The Day After

4 January

the day after

After what you might ask?

And the true answer is that I do not know…………..but I know it’s AFTER.

I meant to write some sort of ‘year in review’ blog sometime in November………and then sometime in December……….but as I usually do~ I got distracted and the pieces and funny things in my head never made their way to the computer. They never formed the story I thought I was going to tell.

Truth is that happens with almost every blog. Since I don’t live on an Island where all of my needs are taken care of and I am free to just wander around thinking charming, witty, hilariously funny or ridiculously sad thoughts and then committing them to print before they flee out of my head forever~~~~I have an idea~ something happens (usually SEVERAL somethings) and POOF the idea is gone. Replaced with whatever ‘somethings’ came up.

I do this with lots of things
housecleaning
laundry
homework
eating
relationships

I start it~ get distracted and then happen upon it later and think “Oh yeah, I wondered where that went” if I even remember that it existed at all……..----cuz sometimes I’m all like “WHO LEFT THIS HERE” and then I get a suspicion it might have been me.

I have A LOT of grand plans and ideas in my head. I’d say about 90% of them don’t happen.

I have A LOT of words in my head. Although people who know me would say that 90% of them come out of my mouth~ they’d actually be wrong. Sure sometimes things fly out of my mouth before my brain has a chance to catch up to the thought and STOP it from being said aloud…..okay okay OKAY it doesn’t just happen “sometimes”…..it happens often. And it is one of the first things about me people notice and it’s usually the thing that has a great deal to do with whether they like me immediately, dislike me immediately, are afraid of me, wonder what the hell is wrong with me, want to be near me, can’t wait to be away from me~ or some amalgamation of all of the above.

Those thoughts I am well known for putting immediately into words. I have a story for almost everything~ and if you’re friends with me you’ve heard a good deal of them.

But THOSE are not the thoughts and stories that need told today.

See what most folks who don’t know me well don’t know~ is that there are thousands and thousands and thousands of OTHER thoughts, ideas and stories in my head. My brain is a veritable whirling dervish of flight of ideas.

There are those that I tell only the people I love and trust the most~ the people I feel will keep them safe.

Then there are those that I tell to people (sometimes people unknown to me) because of some sort of instant connection that bonds us together immediately. These can be some dark ones.

Then there are those that I tell only 1 or 2 people in the whole world. These are my secrets. And believe it or not I have HUGE trust issues~ so I sometimes keep secrets a long time before I trust in someone or something enough to reveal them. And there are secrets that I have kept and will keep for a lifetime.

Then there are those that I tell no one. These are the real scary ones my friends. THIS is where the demons that have haunted me for as long as I can remember live~ and breed~ and strengthen. Once in a while one will surface and it will beg an audience. And it usually terrorizes me until I’ve no choice but to give it and audience or go crazy keeping it inside of my head.

It’s the same with blogging~ get a thought~ it changes~ I lose it……….but the tenacious ones keep coming back. And they keep banging around in my head until the cacophony of noise is too much to bear and I HAVE TO GET IT OUT. And then a blog is born or a story is told~ almost always through a great deal of emotion.

And so here we are 4 January~ the day AFTER.

Last November after several false starts, ideas and failures……The Apocalyptic Ginger Chronicles became a real live THING. Something tangible. A place where I could put the quick thoughts and the ridiculously long stories into words.

A place to set some of the demons free. And in doing so~ I have taken away their power over me~ or at least most of it anyway.

It has morphed into something more~ and two people dear to me have access to the page and share their own stories and ideas. You know them as MAMW and Kumasan. These two keep the PAGE going when I am off side tracked by life.

But the blog…..the blog is different. It is just mine. These stories are my own. Many people IN the stories don’t WANT them to be told……..and sometimes I honor that and gloss over their part……but sometimes I SHOUT THEIR PART OUT LOUD for the world to see~ damn the consequences. For them or me.

Since I started the blog life has continued to whiz by. People have been born. People have died. Anniversaries and birthdays celebrated. Anniversaries and birthdays forgotten and unacknowledged. We have been sick. We have been well. Holidays and family visits have been enjoyed. Holidays and family visits have just been survived. People have come into my life and changed it forever. People have left my life and changed it forever.

 4 January……As I look around my house today it looks like someone came in a ransacked the place. Seriously. It’s bad. There is STUFF everywhere. Very little is clean. Very little is currently in the place where it belongs. Much of it is mixed up and buried in a pile somewhere. Every flat surface is cluttered and covered with crap that needs dealt with. It looks like Christmas came and threw up here~ and like that bad friend at the party who throws up on your shit and just LEAVES it there~ the Christmas vomit is everywhere and needs to be cleaned up. There are piles of laundry, dishes in the sink and a cat box that needs scooped. My house is loud and it’s crazy. I have promised too much. Committed to too many different things and started WAY too many projects that I think are UNDER the piles of crap and Christmas vomit everywhere. There are 15 things scheduled today and only 7 will get done. There are hundreds of things I WANT and NEED to do today~ but only about 3 of those will actually get done.

And at 4 o’clock this morning I realized that the state of my HOUSE at this very moment is the physical manifestation of the state of my LIFE and ALMOST ALL of my interpersonal relationships at this very moment.

It’s been a hell of a year. It’s been a wild ride. There are memories now burned into my brain and scars permanently etched on my body and on my heart. There are treasures that I hope to keep forever and look back and laugh at. And there are parts and memories and fights of EPIC proportions that I’d sooner never, ever think of again.

The fabric of my future stories is being woven even as I type this. The happy parts of my stories are being lived….. some of the demons are being dealt with and some of the demons both new and old are being buried in the hopes they won’t ever resurface.

And just like my house ain’t gonna clean itself~ my life ain’t gonna change unless I begin to make that happen.

And just like my house~ I can’t possible clean up my LIFE in one day. It is going to take time and patience and love and tears and emotion and lord knows some really uncomfortable and awkward situations.

I suppose this is the day after because it marks the end of the week where some very important commitments were shattered into a million tiny pieces………and the week when some commitments have been strengthened and some really important truths have been revealed.

If you’ve been in my life in the last 14 months (or any part of it) and I have not lived up to a commitment I made to you please know that I am sorry. I cannot go back and UNDO anything. I cannot go back and DO things differently.

The absolute best I can hope for is to put things back in order, rearrange some things, let some things go and keep in mind that I can only DO so much today.

If you’ve been in my life and I have lived up to what I promised you~ thank YOU for helping me do that. I promise it will not be forgotten.

And so I move forth~ both out of the cocoon and safety of my bedroom and out of the cocoon of  what my has been my life for a long while now.

My house and my life need some serious work. A major overhaul. Some shit needs to just be thrown out and some shit is going to take a lifetime to repair.

And I will tackle it the best I can.
Loudly and inappropriately sometimes.
With all of the passion in my heart and soul.
With love and grace (I hope).
With the help of others.
 
If you’re still HERE in my life~ buckle up and suck it up buttercup because it sure as fuck ain’t gonna be easy.

But then~ nothing worth having ever really is.

Happy page~anniversary The Apocalyptic Ginger Chronicles.

Now~ bring on the madness and the cleaning~ LET’S DO THIS FUCKING THING!!!!!!!

Friday, November 22, 2013

The Day Part of the Dream Died

November 22, 2013

As many of you must know~ today is the 50th anniversary of the assassination of the youngest man elected President of the United States~ and the only Roman Catholic to date to be elected.

When you grow up in a Catholic/ Democratic household it was not uncommon in the 70's to grow up in a household completely in awe of and enamored by The Camelot Era.

As most people of age at the time of the assassination~ my mother could distinctly recall where she was at the exact moment she learned that JFK had been assassinated. She told the story with such detail that I almost felt as if I **had been** there. My siblings and I grew up sort of in the shadow of Camelot. My mother loved and bordered on obsessed with this man, his life, his death and what it meant to the American people. And she raised at least one daughter who was equally so.

My mother often cried when she discussed certain parts of his life and his legacy.....and to this day~ so do I.

When I was a young girl (and all the way to his untimely and equally tragic death) I dreamed of someday marrying or at least **meeting** JFK Jr. Such a part of the tapestry of my life is this family I have never met. To this very day I am completely in awe of Caroline Kennedy. THIS woman has known some tragedies in her life......and yet she conducts herself with such grace~ and instead of reveling in or taking advantage of her 'gifted' upbringing and family fame~ she lives and raises her children quietly and with decorum. That my friends is strength in action.

When my mother told the story of how Jackie and JFK had survived both a little girl being stillborn and losing a son as the direct result of prematurity (later I would learn that Jackie had a miscarriage too)~ I felt such a connection~ such an overwhelming sense of empathy~ I cried. A LOT. Every. Single. Time.

Little did I know that these tragedies would later DIRECTLY impact my own life and children (I'll get back to that in a moment).

My mother talked of a time when our President was great and honorable. Later it would widely be speculated if he was great or if it were our country that was great at the time. And HIS honor has since been called into question many, many times and details of his behind the scenes 'philandering' have been widely publicized.

Even still~ the love and admiration for this man and THIS family and THIS political and romanticized dynasty remains in my heart. There are still times (a LOT of times) I am moved to tears by the imagery and memories of this family and this era.

Like when I visited his grave at Arlington National Cemetery..... the 'eternal flame' quite literally brought me to my knees.

Like when I visited baby Patrick Bouvier Kennedy's grave at Arlington National Cemetery and I collapsed in a pile of tears.

Like whenever I see that iconic picture of JFK Jr. saluting his father's casket.

Like whenever I see that iconic picture of Jackie crawling on the back of the car to pick up pieces of her husband's skull and brain seconds after watching her husband be shot multiple times.

Or the one where he is slumped in her lap.

Or the one where she is boarding the plane, pink dress blood stained~ blank stare on her face~ I see the numbness~ her display of the universal body language of grief  and I remember that feeling all to well.

Like when I remember the desperate search for JFK Jr.'s body.

Or his, his wife's and sister-in-law's luggage and personal effects washing up on shore.

Or of their caskets being buried at sea.

Like when I see the picture of Caroline in her perfect dress clutching her mother's hand and putting on a brave face while practically the whole world watched her father's flag draped casket pass by.

Or when I see her speak~ with the same decorum and 'put together' confidence and beauty that her mother had.

Although I have never had the honor of meeting a single person from this larger than life family~ I empathize with them all the same and my own life has been directly affected by them.

          My own mother will forever be young and beautiful in my minds eye~ as she too was taken far too soon.

         My own father was slain with a bullet to the head. And he too remains young and handsome in my mind's eye.

         At times I feel like most of my own life has been a series of tragedies to overcome.

         My own son was born prematurely and died soon after birth.

         I fully KNOW that if the President of the United States and his young beautiful wife had not delivered a son and lost him to (what in the day was) severe prematurity~ that the medical science of saving premature babies would most likely be nowhere near what it is today.

and THAT, that right there alone brings me to my knees.

Patrick Kennedy was born at just over 34 weeks gestation.....weighing in at (what would now be) a whopping 4# 10.5 ounces~ and yet he could not be saved. Today his early birth and medical condition would be rather 'routinely' treated in the NICU~ probably not even requiring a lengthy stay. Today he would be one of the largest babies in the NICU~ and face a minimum amount of sequella from his 34 gestational week delivery.

It is largely due to the advance of medical science that was spurned by Patrick's death that allowed my own daughter to be born at 24 weeks 3 days gestation, weighing 1.6 ounces~ and survive to tell the tale. She and millions of other babies who would once have not even been attempted to be saved.

The significance of these facts and ALL of the Kennedy's contributions to our great nation is not lost on me.

So today, in honor of them all and of my mother who planted the seeds of love and admiration for this family, I REMEMBER. I take time to reflect. I take time to be grateful for how they, who I never met, impacted my upbringing, my love of my country and my own very premature daughter.

To Caroline I would say I understand at least some of what your life filled with a great deal of tragedy feels like. I would say thank you for all that your family has done to shape and mold me into the person I am today.

Love, light and profound gratitude,

Ginger









Monday, November 18, 2013

A Letter to my Son

Today is World prematurity day 2013~

I share with you a letter I wrote to my son the day before his would be~ should be 3rd birthday. The sentiment and words are the same.....time has passed~ but the ache in the part of my heart forever broken remains......today he would be 6 and a half~ his baby sister ~his legacy really~ is 5 now~ and she remains a constant blessing and beacon of hope after the most devastating days of my life....
 
Please read and share,
Ginger

 

 

A Letter to my Son

May 28, 2010 at 12:23pm
In memory of William Robert Erich Petsch



Dearest baby William,



I remember well the dark night in May when I awoke and immediately knew that something was terribly wrong. The gush of fluid, the familiar contractions… I prayed “no it can’t be Lord…please…it can’t be”. I woke daddy and we raced to the hospital. I remember saying to him during that car ride “you know this will probably not end well”. For two days we held out hope. Doctors and nurses came and went…all with the same message “it’s too early; your son will not live”. Only when mommy got very sick and things went from bad to worse did we agree to give up hope.

On a sunny Tuesday morning my labor in full swing, I was so very very angry. I kept asking WHY, why is this happening to me, to our son….after all that we have been through….WHY would he be taken away from us? After six grueling hours you were born, tiny, living and perfect. You looked exactly like your brother. Mommy held you; Daddy held you, your brother, sisters and Aunts came. For exactly 1 hour and 47 minutes you lived. We took turns holding you and each other ~ we cried a river of tears. That crowded hospital room was filled with a lifetime of love and a profound sadness that we would not be able to watch you grow into a man. Daddy was holding you when your tiny heart, through transparent skin, stopped beating forever. The midwife pronounced that you were at peace.

The next day~ I left the hospital with pictures, your footprints, your tiny hat, the blanket in which you were wrapped and a broken heart. How could they expect me to go to the funeral home? How could I possibly focus on the details of your funeral? How does a mother choose a resting place for her son or what clothes she will wear to his funeral? How could I take a maternity leave with no baby to care for? I cannot recall a time in my whole life when I was more profoundly devastated. I cried, I screamed, I ached to hold you and see you one more time. My heart honestly felt like it was breaking. The physical and emotional pain was almost too much to bear. There were days when I was certain that I would not survive. I was angry that the world seemed to just go on ~completely unaffected. And I wondered how everyone else could be the SAME when I was so DIFFERENT. The days and weeks passed in a blur of devastation.

Daddy and I decided that we would try again. We had so much love to give, we desperately wanted another child. The first try didn’t work and with the pain still fresh and raw I fell apart again. Months later, we tried for what we both knew would be the last time. I felt a genuine happiness when I found out that it had worked and I was once again ~ pregnant. The happiness was almost immediately replaced with sheer terror. After a difficult first trimester~ the second trimester brought fear that something was wrong. An amniocentesis confirmed that I was carrying a healthy baby girl. Once again I grieved for you. I had pictured my life for so long with 2 baby sons…I did not know how to come to grips with the fact that my dream of two sons died with you.

On a normal evening in late March my water broke. All of the memories flooded back. NO IT’S too EARLY. IT CAN’T BE HAPPENING AGAIN. To the hospital we went. They transferred us to Pittsburgh. The doctors and nurses there came with the same message “there is nothing we can do, your child will not survive”. Daddy and I were devastated. We cried, I screamed, I prayed “God what lesson is it that I did not learn losing William that You think I need to learn by losing another baby”. “How can I possibly lose another child?” The answer that I received there~ in the quiet of the hospital room~ was “you don’t have to”. From that moment on~ I knew I would fight with my whole life to save your sister. She was 4 weeks from “viability”~~ 4 long weeks before they would even consider trying to save her. Again they told us it was hopeless. Over and over nurses and doctors would come and tell us all of the terrible things that could and probably would happen even if she somehow miraculously survived. I was hearing NONE of it. Daddy says I was demanding…I like to think of it as being assertive:) We came back to Erie, a few days later I was admitted again to the hospital. For 4 seemingly endless weeks I stayed in the hospital on bed rest. The doctors and nurses continued with the gloom and doom prognosis. But my heart and mind were strengthened with an unexplainable peace and fortitude. Exactly four weeks to the day after my water broke…your sister made her dramatic entrance into the world. The first thing that Daddy said to me was “she is so much bigger than William”. At a whopping 1 pound 6 ounces and 11 and ¾ inches long she was! For 97 days we rode the NICU rollercoaster. Many times during those days we were told about all of the terrible things that she might face: deafness, blindness, brain damage on and on the list went. I visited her every day. I prayed to God and to you “please watch over her and keep her safe”. I cannot explain HOW I knew that she would be healthy…I just did. I knew that her path was destined to be different than yours. The path was difficult, the obstacles many. Throughout the journey I knew in my heart that she was going to be ok. Today your sister Faith is a walking, talking two year old miracle child. She is small but mighty. She is full of spirit and headstrong. She is here and alive because you gave me the strength to fight for her.

It will be three years tomorrow since you were born. I think of you every single day. Daddy and I both wear your footprints permanently…because no matter what~ you are ALWAYS walking with us. Sometimes I wonder what my life would be like if you had survived. I am not at the point where I can say that I understand why you had to go to heaven. But I do know that you had a lasting and profound effect on me and on everyone who loves you. I am different because I am your mother. I am stronger than I ever thought possible. We will celebrate your birthday with a cake and a song. We will reflect on how your life and death changed us. We will cry that you are not with us. We will be more grateful for what we have because of what we have lost. You will always be a special part of our family. When people ask me how many children I have~ I proudly say 5~ one lives in heaven.

I love you and I miss you every day. Thank you for being my son.



~Mommy~

Monday, September 2, 2013

A Letter For My Mother

September 2, 2013



September 2, 1985. A day that changed life as I knew it forever.

Yesterday I wrote about my experience of September 1, 1985~ leading up to my mother's death. You can read about that here if you missed it.

My life has changed again and again and again in these last 28 years.......when I became a mother myself I learned first hand how hard it was. I have not always done it right~ but I have done the best I can with what I have at the time......this is a lesson I learned from my mother.......this and SO many more.

This is the letter I write to my mother today~~~

Dearest Mom,

I'm not sure how to start a letter to you~ but I'll just speak from my heart~ and we'll see where that takes me.

I want to tell you that I love you. I have always loved you and I always will. I believe that you loved all 4 of us.......I know that it must have been hard for you to express love for your son~ when he looked and acted so much like our father.....but if you could~ would you please let him know in some way that you did love him just the same. He is struggling mightily last I heard........I fear it won't be long until he is lost forever.

I still grieve for you.....and now your namesake~ my sister~ has joined you in the cosmos. Her life mirrored your own in so very many ways. It seemed as though she could never escape from that life.......in the end they say she was happy~ I hope this is true.

I am not as close to my baby sister as I would like to be~ it seems as though we live a world apart~~ and in many ways we always have.

I want to apologize for always being so hard on you. I know that you always believed in me. I know that you had huge dreams and plans for how my life would turn out. Although my life today barely resembles your life plan for me....... I hope that you are proud of the woman and mother I have become.

I never really understood *why* you did the things that you did......never fathomed *why* you made the choices that you did.......it is ironic that I would now use one of your favorite momisms to describe me: I couldn't see the forest for the trees.

When I became a mother~ the whole world changed ~ I promised myself that I would not end up like you. I promised my daughter that she would have a better childhood than both you and I did. I hope I lived up to those promises.......at least the one about the childhood.....as I age ~ I have learned that we share lots of qualities and I am no longer afraid of what that means.

A short 5 years after you died I looked around at my life~~~ and I was horrified to realize I had~ in fact~ mirrored some of the hardest parts of your life: I was uneducated, jobless, divorced, single mother, hated my ex husband and his new wife and I was involved in an abusive relationship with a man who resembles your last husband far too much for my comfort.

This was a terrifying realization on SO many levels......but it was also a turning point......it was also the point at which I decided to take some of your advice and pick myself up~ dust myself off~ and start again.

It was YOU and your words that I heard in my head when I enrolled in college. It was you and your sister who ALWAYS told me I could be whatever I wanted to be......and I believed you both. You used to compare me to that sister when you were feeling like I was getting a little too sassy or 'big for my britches'. At the time I always thought of that as a compliment~ in fact I still do. I had the opportunity recently to spend a good deal of time with your sister~ she said that she thinks I am "a beautiful combination" of you and grandma in looks and mannerisms........that made me cry~ tears of joy to be sure. I shared with her the story of the day of your death~ she has so much pain associated with that day and the events that followed. I told her that even though you were jealous of her and you thought she was somehow 'better' than you~ you loved her very much. I'm not sure she believes me......she too could use some reassurance of your love.

When I realize that the only grandchild of your own that you ever got to meet is also dead now~ it makes me very sad. I don't know *what* happens when we die~ but I *have* to believe that *something* does......THIS simply cannot BE all there is. If you are with your mother, Jason and Elaine please tell them how much their family loves them. I believe that you all died so very young because your pain here on earth was just too much to endure. Childish maybe~ but I believe it to be so.

I lost my own son not all that long ago~~ and I remember very distinctly grandma's words standing beside your casket. She said "a mother should NEVER have to bury her child" and now I know that lesson all too well.

I want you to know that I am happy. I have had the opportunity to see and do things that I once could only imagine. I have 4 beautiful and amazing living children. They are, in large part, the reason I am who I am. You are a great-grandmother now. Your great-grandson is absolutely beautiful~ blond hair, blue eyes, amazing smile~ he looks so very much like his mother and her father.

Thank you for teaching me *not* to make disparaging remarks to my children with regard to their father.
Thank you for teaching me that I did not have to remain in any relationship that is toxic~ no matter the nature of that relationship.
Thank you for teaching me that I had worth.
Thank you for telling me that I am beautiful.
Thank you for believing in me.
Thank you for helping to shape me into the mother and woman I am today.
Thank you for teaching me that children NEED responsibilities.
Thank you for teaching me that yelling and screaming at my children almost always does more damage than good.
Thank you for putting a woman in my life who has become like a mother to me and a grandmother to my children~ she will never take your place~ but she has loved me as if I am her own~ and she has 'mothered' me when I needed it the most.
Thank you for teaching me that I must stand on my own two feet.
Thank you for teaching me that the only person I can and should control is myself.
Thank you for teaching me that I should always be responsible for myself~ that my financial and emotional well being should *not* be controlled by ANYONE but me.
Thank you for mothering me and my siblings even when it was hard.
Thank you for loving us the only way you knew how.

I forgive you for the things I once hated you for. I forgive you for the shortfalls in your parenting.

Please forgive me for judging you. Please forgive me for being so hard on you. Please forgive me for thinking even for a moment that your life or choices were EASY.

Please know that no matter where I go....how far I travel in the world....how successful at anything I ever am.......I will *always* remember from where I came. I will always remember that you did your best. I will try to tell my children about the GOOD things you did~ and the funny things you would say~~~I will do my best to remember you in the best possible light as often as I can.

Though you are gone~ I still remember your smile, the way would laugh at your own jokes, the way you smelled when you hugged me and the image of you holding baby Jason for the first time.

I hope that you have found the peace you struggled for your whole life.

I hope that I make you proud.

I see you in my dreams~ you are young and pretty and happy~ those are some of my favorite dreams.

I love you with my whole heart.

Be well mom~ you more than deserve it.

Love Always,
Your second daughter




Sunday, September 1, 2013

A Flashback: 28 years Ago Today

Sometimes I remember the day as if it were yesterday.....

I was sitting in my living room this morning~ watching my young children play. I *just happened* to look at the clock~ it was 10:35, mid morning on a hot, humid Sunday morning~ Labor Day tomorrow~~~ and it HIT ME.........28 years ago today was *also* a hot, humid Sunday morning~ and Labor Day was the next day~~~ but *that* morning was vastly different than today. I knew the anniversary was tomorrow~ I have been thinking about it for 2 weeks now.........but today: TODAY it ALL came flashing back......

28 years ago today my mother woke me up in the morning and said that she had a terrible headache and her back hurt.......she had frequent headaches and back problems, so I thought nothing out of the ordinary with that statement. She said "will you please rub my back?" and I said "yes". I did not know that those would be the last words my mother would ever speak.

This is my recollection of that day~ 28 years ago~~~

I was rubbing her shoulders.....there was no sound....no cry of pain.....no words spoken....nothing in the that bedroom or the universe that could have prepared my 14 year old self for the horror of the next 15+ hours.

I had no idea why~~ but suddenly something was different. I asked her if she was okay~ she did not answer~~ it was then that I placed the palm of my hand on her back~ and it was then that I discovered she was not breathing.

The events of the next 15 hours have left scars on my heart and so very, very many painful images that cannot ever be unseen. I relive them sometimes~ in my nightmares~ and I always wake up the same~ covered in sweat, feeling like I am gasping for breath ~ and screaming.

In my heart of hearts I genuinely believe that my mother left her earthly vessel ~ a body that had endured a lifetime of struggle and more pain than I could imagine at the time~~~~that morning in the bedroom........I felt it then and I still feel it today. She was not there~ she never came back~ she was gone and though I could not comprehend the magnitude of the situation~ I *knew* it to be true just the same.

It would take the world another 15 hours or so to accept that and begin to process it. The paramedics came......quickly......they were just down the street.......they tried~~ gods know they tried ~ I remember them working so feverishly to bring her back. I remember that every time they got her heart to beat ~ they would pick up the stretcher~~~ move 3 feet~ only to have the monitor flat line indicating that her heart had stopped again. And they would put the stretcher down and try again. Now I don't know if you have ever seen or participated in doing CPR on a person~ but it is grueling and very HARD work. And it is a brutal thing for a child to watch~ especially when it is their mother.

I have no idea exactly how long this went on~~ but it seemed like forever. Eventually they did get her heart to beat and stay beating and they had intubated her~ and then I was in the back of the ambulance~ and it seemed SO LOUD~ and there was so much happening~ and I think I was crying silently~ at least I am in my nightmares.

Screaming down the street she was transported to a hospital nearby. A team of clinicians used everything that was available at the time to try to bring her back.

For a brief while (a couple/few hours maybe) they were successful in getting her heart to beat again and stay beating. She was placed on a ventilator and transferred to the ICU. But as the day wore on it was becoming more and more evident that it was not going to work. She remained unresponsive.

The waiting room near the ICU is VERY small~ and only 2 people could go in to see her at a time. It was in that small waiting room that we cried and talked and cried and talked and then cried some more.

My mother had always been very adamant about not "living like a vegetable" (her words~ not mine). She had endured WAY more than her fair share of medical issues and had many surgeries. Always she had expressed that if it came down to it~ she did not want to live the rest of her life on a ventilator in "some goddamned nursing home somewhere" (her words~ not mine).

Late in the evening two doctors asked us all to gather in the tiny waiting room. From there they escorted ALL of us into the ICU (you *know* it's bad when the let the whole damn family in at once). In her room one of the doctors explained to us that during the LONG length of time that her heart was not beating and she was not breathing~ her brain was deprived of oxygen. That deprivation had most likely left her with a significant amount of brain damage~ there was no way to tell for sure as she was far too unstable to be transported to radiology for a CT or MRI. But, based on his years of experience and the tell tale signs that my mother was displaying ~ or not displaying as the case may be~ it was his estimation that she may never recover to her previous self. And he asked us to begin talking over the options (which really~ we had been doing all day). He said it may not come down to a choice for US to make~ if her heart did not respond to all of the meds and efforts~ there would be nothing more that they could do.

So crying and sobbing like a pack of wounded animals we returned to the tiny waiting room and we talked. We talked A LOT. Her mother, father and sisters were on there way~ once they got word they packed and started driving what must have been a really grueling and horrible 11 hour trip. There was no way to reach them on the highway~ these being the days long before cell phones. We were (and I'm certain they were too) praying that they would get to her in time.

Now I have no love for the man who was my step-father at the time. He was cruel to my mother and to us..........really just a horrible human being. He did very *little* RIGHT by us.............but I have to give credit where credit is due. He did *this* one thing right.....

We decided together~ her four children and husband~ that we would take a wait and see approach~ knowing the doctors needed to prepare us for the worst~ we decided to hope for the best.........

And then he came......the doctor whose face I can't even remember......and his voice was urgent. He rushed out with the words telling us that my mother was now having periods where her heart would not beat correctly (it's called ventricular fibrillation) and this heart rhythm directly precedes her heart stopping. Since she was in the ICU and connected to more machines than I could count~ when her heart entered this rhythm~ they would "shock her back" before her heart stopped. But at this point they had shocked her roughly every 10-12 minutes and the cycle was just repeating. He said that he needed us to make a decision *now*. He said they *could* keep shocking her~ and as long as her heart beat came back this cycle could repeat......however he said eventually that would fail too~ could be a few minutes or a few hours~ but her heart was too badly damaged as was the rest of her body~ her systems were shutting down. He reiterated that he felt that her brain had suffered a tremendous amount of damage and that she would not survive. 4 pairs of children's eyes~ red and swollen from crying~ stared back at him in silence as he told his tale. Once again~ he asked us to decide which path to take......SOON....did we want them to keep shocking her or did we want to let her go?

We talked very briefly after he left the waiting room~ for we had been talking about it for 15 hours now.........and we all *knew* and agreed what was both the right thing to do and what she had always conveyed that she wanted. It was time to let her go.

Back into the ICU we streamed *just* as they were shocking her ~~ I'm sure you've seen it on TV~ where they goop up the paddles and yell CLEAR and everyone moves back and then KABLAMMO......and then they stare at the monitor to see if it worked.......did not ~ CLEAR and KABLAMMO......check again~ did it work? yes...ok heart beating. Well let me tell you what~ if I live to be 120 I swear I will never, ever be able to get that image out of my mind~ the image of her body~~ connected to a ridiculous number of tubes and machines~ *literally* coming up off the bed from the electric shock.....it haunts me in my nightmares~ but not nearly so often as it once did.

In we streamed to her bedside. Conveyed to the doctor that we knew (for real and for certain after seeing the HORROR of they were doing to her poor body) she would not want this. And we did not want this. And as hard as the words were to say we said: when it happens again~ please don't shock her......and he expressed sympathy and understanding and left the room.

Around her bedside we gathered~ we held hands~ we cried quietly~ I know I was praying~ though I wasn't really sure what to pray for.....

And then all of the monitors started alarming~~~ and you can see the tracing of her heart beat on the monitor~ it was not the beep, beep, beep that the monitor had been making all day~

I'm not sure which of us in the room asked, but someone did "is this IT" they said...."yes" the nurse said "this is it"..........holding hands with the person next to us we all reached out to touch her....and I remember thinking in my head (though I do not know if I said it aloud)....it's okay mom, we love you, you can go, your suffering is done....be at peace.

And the monitor that had been tracing her heart now made one continuous screaming bbbbbbeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeppppppppppppp...........and the line was flat.

And she was gone.

She was my mother, she did the best she could with what she had.
I believe she loved us all and wanted us to have a happily every after life.

Her name was Donna..... and just after 1 in the morning~ September 2, 1985 surrounded by her children she died.

She was 37 years old.

Monday, August 26, 2013

What is this "Time Flying" Phenomenon everyone is talking about?

Okay~ so summer is coming to a close and kids are going to school all over the country~ some going to school for the very first time.....and some moving off to college.....and *everything* in between.

I've noticed in the bible according to Facebook that this has triggered a 'where did the time go' nostalgia and endless pictures of clean kids holding brand new backpacks~ most looking some kind of combination of fake smile and sheer terror. Now, I'm not sure why~ but here at the AGC my kids living at home don't go back to school until tomorrow.......so I'm late to the 'post the pics of your kids on the first day of school' party. Never fear~ I will post them too.

It just so happens that I have a daughter who is starting Kindergarten tomorrow~ and we ALL know that's a pretty BIG deal.
It also happens that the wonder boy will begin 3rd grade tomorrow. He looks less and less like a boy every day.
It also happens that I have a son who will never, ever have the chance to go to school.
It also happens that I have a daughter~ who despite being a divorced single mother ~ working her ass off to provide a life for my grandson~ a couple of weeks ago started school to earn a degree that will help her to do just that.
It also happens that I have a daughter who is navigating being a Navy wife~ who just recently watched her husband sail away on a very large ship~ knowing she'll not see him for 9 long months~ and SHE starts school as the TEACHER of the class going on 5 years now.

When I look at my life as a whole~ I sometimes feel like I have lived 3 almost entirely separate lives. Often when I think of an event or a place in time I'm known to say "gods that feels a *lifetime* ago".....and I really MEAN it!

So I experience my own 'time flies' sensation........once in a while......but I know it is not nearly as often as other folks do..........

My baby~ the youngest anyway as she is no longer a baby~ starts kindergarten tomorrow. This will be the very last time I send one of my own children off to Kindergarten..........and YES it is a BIG DEAL~ but in so very many, many ways~ it's a *big* deal for different reasons than it was for my other 3 children. And I suspect that it is also big deal for reasons only a select few moms have also experienced.

Over the last few weeks I've been asked literally hundreds of times "can you believe she's 5 and going off to Kindergarten?" or some variation of that question. Now~ as any good mother does I said "gosh, I know right?" and then the follow up statement from the question asker: "Man that went by so fast"......and HERE is where I pause~ and HERE is where the big deal difference is........

because it really *did not* go by fast~ or at least for me it really didn't. You see the last 5 years (more like 7 really)  have been some of the MOST challenging of my life. And believe me when I say: THAT'S saying something.

Although there were times when I felt time flying by~ last summer for instance~ my first summer not working in a long, long time~ last summer went by fast.........but when I reflect upon my youngest being 5 and starting school~ I really do NOT feel like time has flown. In fact upon reflection~ I feel quite the opposite~like there were more days than not that time actually seemed to slow down.

In my heart of hearts I *know* that I feel this way because there were SO MANY moments that turned into days and in some cases days that turned into weeks and months~ that I really was not sure I would survive.

There were lots of days when the heartbreak was so paralyzing that I could literally HEAR the seconds ticking in my head~ and I remember wishing and praying and begging the universe for those days to just be OVER......and yet they seemed to last forever.

There were lots of days that I woke up after 2 or 3 hours of fitful sleep~ auto piloted my way through some crazy combination of mothering, working and just barely surviving........and on those days I often found myself looking at the clock thinking: gods can it really only be (whatever) o'clock? I'm not sure I can make it (how every many)  more hours I need to survive before I can try to sleep again. Only to wake up the next day and do it ALLLLLLLL over again.

Ironically~ the last 7 years have also held some of my most incredible triumphs~ some of my proudest moments~ some days when I found that I was stronger than I ever thought I could be~ some of the VERY best days of my life............and yet even those were in some ways clouded over by a shadow cast by a very tiny boy.........for even the smallest of children can cast a very large shadow.

But *that* boy and his impact are also a huge part of the reason that I *have* a daughter to send off to Kindergarten tomorrow rather than another tiny urn filled with ashes and a mother's broken dreams and shattered soul.

*that* boy is a large part of the reason I am able~ even on autopilot days when I'm not sure how I'm going to make it to bedtime~ to find something to be grateful for.

*that* boy is a big part of the reason that I cherish every. single. amazingly wonderful. moment. in ALL of my children's and grandson's accomplishments.

*that* boy is a big part of the reason that I have learned AGAIN (for I always *knew* it~ but forgot for a while) to REALLY LIVE~ to love~ to find joy~ to find peace EVERY day~~~ because none of us is promised even another moment in time~ much less a day.

I've spent (what some would say were far too) many days in the last years reliving the grief and soul crushing pain caused by the death of my son. But having spent the last year telling his story~ bringing the sadness and the pain and the anguish out into the light~ and learning to deal with it better~ I'd say I am exactly where *I* need to BE in the process right now~ and I always *have BEEN*.

So as my daughter goes off to Kindergarten tomorrow~ there will be pictures, there will be tears (but not of sadness), there will be some nostalgia I am sure.

But there will not be a feeling of "I can't believe it's time for this already"......because from the very moment it was decided that we would try for another baby~~~~ right up to today~~~~~ precious little of her life came easily. We had to fight for every. single. step. and it's been a LONG 5.75 years.

So as she boards the bus bravely holding her brother's hand~ I will not be crying and thinking "where has five years gone"......

I will be crying and thinking "YOU GO wee tiny princess! GO and conquer your first day of Kindergarten the way you have conquered everything ELSE they said you would never do! You GO and make your mark on your brand new school the way you've made your mark on every person who knows your story!"

I will also be crying and thinking "thank you William~ thank you for giving me the strength to fight for her".

I will also be shamelessly proud of MYSELF for having never given up on her, for having fought for her, for having raised this miracle child to the very best of my ability~ DAMN that was a hard 5.75 years!

I will also be thinking "TAKE THAT DR. FUCKFACE~ YOU. WERE. WRONG. As I said to you in the teeny tiny hospital room on a dark night in March of 2008~ when you said there was no hope: WRONG~ there is ALWAYS room for hope~ and that girl getting on the bus right now is LIVING AND AMAZING PROOF!"