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,


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 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,



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.


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 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 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 least the one about the 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 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 far I travel in the 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 cry of 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 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)'s okay mom, we love you, you can go, your suffering is 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 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!"

Friday, August 23, 2013

Syria? Where the fuck IS syria? Why the next Batman (seems to) get more attention than the world...

Syria? Where the fuck IS syria? Why the next Batman (seems to) get more attention than the world.......

Now this here is *my* blog. And the opinions expressed within are mine and mine alone....


evidently only 2 things happened in the world today: some devastation in Syria and the announcement that Ben Affleck will play the role of Batman in the next of the Batman series of motion pictures.

well~ at least according to the memes on Facebook~ and isn't Facebook the new bible of information?

So there was this meme in FBlandia that showed Heath Ledger as the Joker with the words "hundreds get slaughtered in Syria, no one notices. But Ben Affleck gets cast as the next Batman and people lose their minds"....and I laughed.....I did ......and I thought it ironic.........

until I looked at my OWN FB posts for the day: Batman 7; Syria 0

and then before I pressed the 'share' button I wondered WHY? Why do I hesitate to share this admittedly funny meme?

For the Ginger~ the reasons are many

But Imma thinkin for the USA at large ~ at least a *few* will understand my reasons.

Here are the top 4:

1. Christian Bale is a hard act to follow
2. Ben Affleck (although he has proven to be a good father and partner and make beautiful babies) is REALLY not the actor to portray the iconic and revered Batman
3. Heath Ledger's tale is a sad and tragic one
4. I realize there are things happening in the world and in my very own country of origin that defy the realm of even imaginable (the Batman role notwithstanding)

and then I thought about it

and thought about it some more

and I realized that having survived what I consider to be more than my fair share of tragedy and horror: THIS is my reality today:

**I go to movies to be ENTERTAINED. It has been a great LONG time since I've been able to watch any sort of movie that hits a little too close to home~~~~ these include any movies with graphic portrayals of child abuse, rape, incest, torture, the death of a child or even the death of one so young via heart attack.

**I can't be entertained by these movies because I have LIVED them in REAL life and SURVIVED them.

**I didn't even watch "The Dark Knight" because I couldn't handle watching Heath Ledger's tortured portrayal on the big screen.

**When it was time for the Academy Award for 'Best Supporting Actor' I turned off the TV~ *knowing* what I did that no matter the posthumous awards~ nothing could bring him back. Alcohol, drugs and living with a daily war inside himself had killed him~ and you cannot come back from DEAD no matter how many awards they give you

**We can NOT even engage in a debate about who the fuck the next Batman should be without slinging insults at one another~~is being referred to as a "nerd" or a "comic book Nazi" a COMPLIMENT???

**I know that right here in the city I live, the state I live and the country I LIVE: women are treated as less than equal. The sex of who you love all too often dictates whether or not you are treated equally and given the same rights afforded others. People struggle with alcohol and drug addiction: and often DIE in that fight. The color of your skin, amount of money in your bank account and life choices YOU make and that are inherited affect whether or not you will thrive, just barely survive.......or die.

**At the time of the Oklahoma City bombing: I could NOT watch the news 'reporting' from the scene~ babies being carried out bloody~ parents who dropped their most precious cargo off to be cared for only to pick them up in body bags later~~ same with Columbine~~ same with Sandy Hook~ and ALL but ONE of these happened WELL before I held a funeral for my own child

**I cannot watch the daily news: including what is happening in Syria for too very long~~ because to do so paralyzes me.

This last one is perhaps the most important in this particular blog.

You see there are MANY other things that happened in the world today~~~ and even in the state and country in which I live. For example: an 89 year WWII veteran was killed by teenagers; a US soldier who massacred innocent civilians was sentenced to *just* prison; the POTUS made very *bad* decisions.....I'm certain somewhere a young person was bullied, someone took their own lives after facing such bullying, children starved to death and YES Syria is involved in a Civil War.......

And I have kept abreast of these things.......But I cannot watch them for too very long. It DOES NOT MEAN I DON'T CARE.

What it *does* mean to me is that for me to *see* what humans inflict upon other humans kills a tiny part of my soul.

I'm not saying that lightly. I really MEAN it. There is only so MUCH one I can handle. I am tortured by the fact that THIS is the world in which we LIVE. THIS is the world I will leave for my children.

And so it is *there* that I try to make a difference. I can NOT take on the world all at once~ I will not win.....and I may very likely push myself off my own cliff of sanity~ if I dance too close to THAT edge~ I'll fall in and never escape.

But I can teach my children tolerance. And love. And acceptance. And how to take responsibility for their OWN actions.

I can speak out against hate.

I can speak out against racism.

I can speak out against assaults on our RIGHTS that others have fought and died for.

I can fight for the rights of Veterans, underprivileged, women, gays and ANYONE ELSE who is maligned based upon being different than our society's 'norm'.

But most of all: I can practice what I preach.

I talk about who the next Batman will be and I can watch only movies I can handle. You see Facebook for me is a social media~ it is where I go to be entertained. Sometimes, I engage in a fight about social issues and sometimes I just scroll through messages and copy & paste stupid memes.

This does NOT mean I care *more* about who the next Batman will be than I do about innocents massacred in Syria or anywhere ELSE. It does not mean I fight only the battles I can win.

At night I do not pray that they will appropriately cast the next action night I pray that my efforts make SOME difference. At night I pray that my children are wiser than I am. At night I pray for women, children, gays, vets~ and ALL who are treated as 'LESS than' in their very own homes, cities and countries.

And so I will not post the Heath Ledger Batman meme~ because there's REAL tragedy there~ and it has shit to do with Syria or Ben Affleck. And making FUN of tragedy is something I hope I do not ever do....and if I mistakenly DO~ I hope to recognize it and make amends immediately.

For today I will hold my family close, I will practice what I preach.....and I will pray  that I leave the world a *little* better than I found it.

Love and Light,

Thursday, August 15, 2013

The Story of A Boy and His brand new baby sister part 19: The NICU Rollercoaster

Hello Gentle Readers

Thank you for sticking with me ~ and for reading my son's story. It is his legacy to spread hope~ and my task as his mommy is to help.

If you haven't yet had the chance~ please read parts 1-18 just makes more sense that way.

This is part 19: The NICU Rollercoaster:

27 April 2008

Back on the post-partum side to the familiar room in which I had lived for over 3 weeks now. Visitors came. In a way it was the same as when William was born~ people came~ but there was no baby to ohhhh and ahhhhh over.

But as was promised 4 long weeks ago in the teeny, tiny hospital room in the world renowned hospital~ and as had been everything with this pregnancy~~ *this time* was different. Because there WAS a baby. Yes she was teeny tiny, yes my husband is the only one who saw her for the first 36 hours, yes she was fighting for her very life........BUT SHE WAS HERE AND SHE WAS ALIVE! (take THAT doctor fuckface!)

I was very sad that they would not let me go over and see her: pshawww that I'm not stable enough. Retrospectively, the NICU nurses had enough to do~ what with all of those fragile babies to care for~~ makes sense they couldn't be taking care of the parents~ myself included. So I waited (not so patiently) and I visited with TONS of people who came in to see me. And I shared the picture of the teeny tiny baby girl and the HUGE diaper. Try as I might~ I could not manage to stay awake for long periods ~ I felt like a rag doll~ all of my limbs were heavy~ hard to lift. And so intermittently between visitors~ and sometimes when they were there~ very fitfully~ I slept.

Late that evening~ with all of my visitors gone~ with little more than the familiar sounds of the hospital to keep me company~ I began to really come out of the anesthesia and heavy blood loss fog~~ and I was desperate to see my daughter. I had a very kind nurse that evening and she helped me into a wheelchair and took me to the NICU. It was a supreme effort to stand long enough to scrub up before going in......... and then there I was~ in the darkened and surprisingly quiet calm of the NICU. Monitors beeped, ventilators wooshed, nurses floated around adjusting monitors, ventilators and babies........but it was quiet and calm...and that stilled my nerves.

Now if you don't know let me tell you~ if you or your child are hospitalized: the closer you or your child are to the nurses; the sicker you ARE. And so the kind L&D nurse wheeled me over to a place practically IN the nurses station and said for the NICU to call over when I was ready to go back to my room.

From the seated position in the wheelchair I really could not see very much~ so I stood........and I was *almost* overwhelmed to the point of fainting when first I saw my teeny tiny princess girl. She was SO very SMALL. I mean I *knew* that~ but DAMN! 1# 6.8 oz and 11.75 inches long~ shorter than the length of a ruler~ that is SMALL my friends.

She had a head full of black hair, her eyes were still fused closed, her skin still practically transparent and she was connected to a mind boggling number of tubes, IVs and catheters.

But there she was~ and I was all at once in complete *awe* of this miracle and in complete *love* with my wee tiny princess. It was surreal to stand there peeking into the incubator at this tiny baby that modern medicine had helped us create and hope had helped us keep. Her condition was so critical that I was not even allowed to *touch* the huge incubator in which she fragile was she that she could not handle ANY external stimulation. It would be days before I was even able to touch her teeny, tiny body.

I cried, I cried a LOT.

One of the NICU nurses came over and gently explained what all of the tubes and catheters were connected to. She explained how to read the monitor and not to panic when it alarms. She reiterated that my daughter was in critical condition but stable at the moment. She gave me a few more pictures that they had taken.

I prayed. I prayed a LOT.

The same prayer I had been whispering for weeks now: please let my daughter live and please let her be healthy.

Standing there, shaking~ in the surprisingly quiet calm of the NICU~ I was struck by how far we had come~ 4 long weeks~ with not a single drop of amniotic fluid...........being told there was *no* hope~~ and yet here we were.

In my mommy heart I KNEW that we were still at the very beginning of this rollercoaster ride. We had spent 4 long weeks clickity clacking up that first huge hill. A mere 36 hours ago we had paused briefly at the top~~ and when it was decided that I could hold out no longer~ that she HAD to be delivered via emergency C-Section~ we plummeted hard and fast down that first hill. And that first plunge had very nearly killed us both.......and yet here we were..........both of us......ALIVE.

I remember feeling so very, very tired. Gods I was so tired. I felt as though I had not slept in weeks. In the coming weeks and months I would learn that there is tired~~ and there is barely awake I can't believe I am even surviving much less functioning TIRED. And I would come to know that when your child is in the NICU you push so far past the barely awake I can't believe I am even surviving much less functioning TIRED~~ and STILL you carry on and live to fight another day.

And in that quiet calm of the NICU I could feel baby William with me. I knew in my heart of hearts that he was THERE........I *knew* because I had carried him to this place in my heart and in my soul. And I could feel him there. Watching over us. Protecting his sister and I. Giving us the strength to *fight* and to survive.

There would be other hills to climb soon enough. But for that night I allowed myself to celebrate just how far we had come. I allowed myself to revel in the fact that we had overcome all odds.....that despite my water breaking 4 weeks and 36 hours ago~ despite the fact that she had lived in utero for 4 weeks without a single measurable drop of amniotic fluid~ despite being born into the world at 24 weeks, 3days~ despite the fact that we had BOTH very nearly died in surgery~ WE WERE ALIVE.

And so it was in this mindset that I returned to my room.......and I allowed myself to sleep~ I mean REALLY sleep~ the sleep of the dead......the sleep of one who had not really slept in weeks~~~ I knew my baby girl was alive and safe~~ I knew I had done my very best to ensure her survival~~ and for that night I allowed myself to sleep ~~~ in PEACE.

Sunday, July 7, 2013

The Story of A Boy and His Brand New baby Sister Part 18: Finding Answers

If you are reading this episode in the journey~ I hope that you have found your way through parts 1-17.........the journey to get *here* started wayyyyyyyyy back in March of 2007~ over a year ago.......

THANK YOU for sharing in my telling of the story and thank you for sharing the hope.

27 April 2008

A mere 4 hours after my husband had left the hospital room~ left me clutching the very first picture of our wee tiny princess and a teeny tiny diaper~ all of the sudden I was fully AWAKE. And I could feel my legs.....and I thought I was going to scratch the skin right off of my whole body. The nurse who never seemed to leave my bedside throughout that long night explained that they had given me something call 'duramorph' (a combination of Morphine and I don't know what else) in the epidural space in my spine before taking the epidural out ~ the injection is meant to control post operative pain~ and a very common side effect is itching. She said that she had to go and give the oncoming nurse report and did I want a shot of Benadryl to help with the itching??? OH LORD YES, YES PLEASE! She smiled~ she left the room and was back in a flash with the IV Benadryl. As she was injecting it I thanked her for taking such good care of me throughout the night. I said what I thought was a joke "you never seemed to leave my bedside" and she smiled again and she said "that's because I really didn't, not for very long anyway". And as the IV Benadryl began to make me sleepy once again~ it occurred to me just how badly the C-Section had gone for me. I thanked her again through sleepy eyes....she squeezed my hand~ wished me luck~ and was gone before my eyes closed fully.

I awoke sometime later that morning to a new nurse~ who was also very kind. The itching was still there (and I would later discover that I actually *had* scratched off some of my skin in several locations during my anesthesia/ Benadryl induced fog).......the new nurse checked my vital signs, mashed on my belly (which I could feel~ but it didn't hurt per say) and checked the status of my bleeding.

I asked immediately if there had been any word from the NICU. She said none so far but promised to call over and let me know as soon as she could. She explained that she would be removing the catheter from my bladder and soon she wanted me to sit up on the edge of the bed. She was very strong in her cautioning of me to NOT EVEN TRY to sit up or to get out of bed myself (which at the time I thought was pretty silly). I had been lying almost completely flat to try to avoid what they refer to as an 'epidural headache' since leaving the operating room.

I dozed in and out and about 9am she came back in with news. She had spoken to the NICU nurse and my daughter remained in critical condition; but stable. Critical; but stable. Some days that's the BEST you can hope for in the NICU~ and today was one of those days.

She asked if I was ready to sit on the edge of the bed and if I felt like I needed to go to the bathroom?  Yes~ ready to sit up. No~ I don't have to pee.

Now~ I *thought* I was prepared for how difficult sitting up would be ~ after all I had 5 babies and several abdominal surgeries .......and yes sitting up the first time afterward was always difficult~ but holymotherfuckinghell I was so so so unprepared for what happened next...... a second nurse came in to help her help me sit up....and I thought again "well that's just silly"......right up until I **tried** to sit up. I had almost blacked out when I was hemorrhaging after my first son was born~~ nearly 2 and a half years ago~~~ and I had almost blacked out after William was born~~~ but this time there was no "almost"......the room closed in and the tunnel vision came~ and then everything went dark.

Some time later I woke up to some gross smell being waved under my nose. The nurse on the right taking my blood pressure, the nurse on the left turning the IV fluids to maximum flow. I was a bit alarmed~ but neither of them seemed to be overly alarmed~ they were calm and deliberate yes, but not alarmed. I smiled weakly and muttered "well *that* didn't go very well did it now?" They both actually managed a small laugh. The nurse on the right (my primary nurse for the day) asked me how much of my C-Section did I remember? Again shaking my head to try to clear the fog~ I said I remembered that after my daughter was born things did not go well and based on what the surgeons were saying before I was put completely under I gathered that I had lost a fair amount of blood. And with a small smile she said "well, that would be a huge understatement". The nurse said the OB doc was due in shortly and she would explain more what had happened and what they knew. Before leaving the room she set the BP cuff to check my blood pressure every 5 minutes and put up all 4 of the side rails on the I was even going to attempt to get up~ GAH!

About an hour and 1000 milliliters of IV fluid later my blood pressure climbed back to an acceptable level and the nurses once again asked if I would try to sit up? I said rather trepidatiously "uh, ok. sure". And this second attempt was much slower and was much more successful~ raise the head of the bed a little....check BP......raise the bed a little more.....check BP.....raised bed to sitting upright....check BP......gently my raise back off the bed....check BP......swing one leg over the side of the bed....check both legs over the side of the bed and sit up, a nurse on each side....check BP......this whole process was ridiculously frustrating and SLOOOOWWWWWWW. But retrospectively~ it was better than passing out again.

So there I sat on the edge of the bed~ silently willing the room to stop spinning........and when it did....the two nurses helped me stand up and ever so slowly helped me walk to the bathroom.

Being a labor and delivery nurse~ and this being my 5th child delivered~ I knew very well that the first time out of bed there would be blood. A LOT of blood. And yet knowing that it still seemed to me that I was experiencing an excessive amount of bleeding.

Getting back to bed was the same just in reverse......and they didn't want me to lay flat anymore~ so with the help of the bed I sat up a little for awhile ~~~no idea how long~ did you know that in L&D rooms the wall clock is purposely placed at the head of the bed? So unless one is a skilled contortionist~ the patient can't really see the clock.

After a few more up to the bathroom trips and eating some food (no idea what) my vital signs stabilized and my bleeding slowed. Just as I was being transferred back to the post-partum unit (to the same room in which I had lived for over 3 weeks now) my husband came in.

He said that he had been in to see our daughter and he was told the same as I was~ no real changes, critical but stable.

Over on the post-partum side the doctor who had performed the C-section came in to see me.

It was then that we found out the real truth of what had happened both the night before and what had likely caused my hemorrhaging after each of the last 3 deliveries.

It was then that the question of "why did this happen to me twice" was answered.  The doctor explained that I had was is known as 'placenta accreta'. During my surgery the night before (my first and only C-Section) it was revealed that the placenta had not just attached *to* the uterine wall but had grown *through* the uterine wall.

They say hindsight is 20/20 and just as if a camera had clicked into focus it all made sense......medically at least.

It is likely that I had a mild to moderate placenta accreta with my first dear son~ that led to hemorrhaging after delivery and needing 2 blood transfusions.

It is likely that with William the placenta accreta was larger~ and that it at least contributed to or more likely caused my amniotic sac to rupture so early and the hemorrhaging afterward.

It was known that the placenta accreta with this pregnancy was so severe that I almost had to have a hysterectomy with my C-section and I very nearly bled to death.

So there it was: a medical reason why William had been born so early and why Faith was now fighting for her life in the NICU. I had begged, pleaded and bargained with doctors and God alike for a reason. Why, why, why had this happened?

Oddly, knowing the answer did very little to comfort me or help with my grief.

Just before the OB left the room she said: I try never to tell anyone to NOT have any more babies but, if I was going to tell someone~ it would be you. If you get pregnant again it will almost assuredly lead to your death and the death of your child. It was lucky that you had the C-Section~ because if we had not known why you were hemorrhaging and you were not already anesthetized and we were *right there* to control the blood loss~ well any delay and you would not be here today.

BAM~ ton of bricks

and seeing as how we were just beginning our NICU fight to save Faith from the clutches of death......getting pregnant again: EVER, EVER, EVER again was something I knew with my whole heart I would not, could not ever do~ because I knew for *certain* that even on the very remote chance I would survive *physically* I would never, ever, ever, ever be able to survive it *emotionally*.

Coming next: The NICU Rollercoaster

Wednesday, May 29, 2013

Coincidence? I think not....... on losing my way and finding Faith and Hope again.

29 May 2013

Hello gentle readers. First off I would like to thank the wonderful and talented DeBie Hive for inviting me to do a guest post. I am humbled and honored that she chose me to be part of this amazing opportunity of sharing. It is in large part because of her and the support she has given me that I am part of this beautiful blogging world today.

The enormity of coming up with something worthy of sharing has weighed on me since Kelly first asked me if I'd like to be part of her guest blog feature. Without sounding like a crazed stalker~ I will say that SHE sets the bar pretty high with her knowledge and amazing writing abilities. So here I effort and all......

As is usually the case with me, I have an idea of the subject about which I will write and then 27 things happen and the idea changes a hundred times and when I actually sit down to write (or type in this case) the words just flow freely.........

Today happens to be the birthday of my dear son William. It also happens to be the anniversary of the day he died. One might think that what I would choose to write would be completely about him~ his legacy, his loss and what he means to me. Although *this* post is heavily influenced by his brief but profound life~ like his short life~ the impact and this post is about far more than that.

I have been thinking a LOT lately about platitudes, latitude and attitude. When one suffers a loss or tragedy of any kind~ one expects that it will make other folks very uncomfortable. Many~ in an honest effort to be 'helpful' ~ offer age old platitudes: 'it's God's will', 'God doesn't give you more than you can handle', 'this too shall pass', 'when one door closes another opens' and so forth and so on.

Speaking from a place of having been through several unhappy but  normal life events and what I consider to be more than my fair share of tragedies~~~ I can say I have heard just about every single platitude at one point or another. And mostly (if I am being honest) they don't help me. And sometimes they even piss me right the F*<K off.

Now I am not generally an ungrateful person~ and generally I give folks a fair amount of latitude when it comes to accepting their support and love for what it is..... even when I find their words not especially helpful and in some cases actually *hurtful* to me.

My true friends know this about me~ and they grant me the same latitude~ they know if I snap at them, or say something unkind in response, or simply burst into tears~ they KNOW it's me and my emotional reaction~ it's not them.

I cannot choose what other folks say. I cannot choose how *they* will respond to what I say. Often times (much to my dismay) I cannot choose what tragedies befall me. What I CAN choose is my attitude toward all of the above.

In a life filled with even the most 'normal' amount of chaos and heartache~ one could easily become a very pessimistic and nonbelieving soul. Add in a few extraordinary tragedies~ and one could almost certainly cave under the pressure ~ and be doomed to a bitter and resentful existence.

One thing I have held onto throughout many a difficult time is my belief that everything *does in fact* happen for a reason~~ even if it takes days, weeks, months or even years for me to *see* the reason and understand it's purpose.

 I could name countless personal examples of how just when I needed something it appeared as if from nowhere. I could name countless personal examples of how just when I needed someONE *they* appeared as if from nowhere. I could name countless personal examples of how just when I needed financial or spiritual help *it* appeared as if from nowhere. But unless *I* chose to believe that it is some sort of divine intervention it will mean nothing more to me than simple coincidence.

I am not by nature a religious person.......however, I do consider myself to be a very spiritual person. You see I have to believe that there is something more than just this earthly physical existence. I have to believe that my mother, father, sister, nephew and son are in a better place. I have to believe that I will meet them there eventually.

And the reason I have to believe these things is this:
I spent some time in the land of bitter and resentful ~ and it almost killed me.

Today~ I TRY to always choose hope. I TRY to believe that I am exactly where I am supposed to be. I may not always understand *why* I have to be here~ but I can choose my attitude about the situation. It is no coincidence that the people in my life that I need the most are here when I need them. It is no coincidence that when I need love and strength the most~ I find it. It is no coincidence that losing my son gave me the strength to fight for and save the life of my daughter.

Six years ago today when my Son died~ it was almost my undoing~ I lost my way~ I lost the faith that things would ever be better~ I lost the hope that I would be able to survive with my wits intact.

Today~ though I wonder what he would look like? would he have his father's blue eyes? would he like to play baseball like his big brother? would he be tall like his brother or tiny like his sister? what would his voice sound like? though I wonder these things and a thousand others.......though I grieve his loss still......though there is a part of me that will never be whole until I am reunited with him......though my love for him grows every day and my longing to hold him makes it hard to breathe sometimes........

I look into the eyes of his baby sister Faith~ and I cannot imagine my life without her. I look into the eyes of my grown daughters and of my only living son~ and I see William there~ I see him~ alive and well and whole.

I remember him and I celebrate what he means to me. And in honor of his life and his legacy I do my very, very best to always choose HOPE. Every. Single. Day.

Happy Birthday my dear son.  Thank you for helping me to become a better mother and a better person. Thank you for restoring my Faith and my Hope. I love you.

and to Kelly~ thank you for always believing in me and encouraging me to share my story even when it hurts.

Love and Light,
~ the Ginger herself, mother of 5, learning every day,

Wednesday, May 22, 2013

It's All About Perspective

Okay~ so we will get back to Part 18 in The Story of A Boy......but as I am wont to do ~I have gotten distracted and I need to get some other stuff out of my please bear with me.

It's ALL About Perspective

May 22, 2013

This thought began begging an audience on Sunday. As is usually the case~ I get sidetracked and the best of my intentions go by the wayside. My mama (gods rest her soul) used to say "the road to hell is paved with good intentions" here we are at Wednesday already.....and mother nature has reigned her terror down on the good folks of Oklahoma. So this blog post has changed focus ~ all the while with an acute awareness of the eye of the storm~ at least 12 times.

I have recently had the rare privilege of having a member of my born in, biological family come to visit me for a reason other than a wedding or a funeral.......AND it went very, very well. Much better than I had even allowed myself to hope for. On Sunday this woman, who as a child I wished WAS my mother, decided to return home. And it hit me like a ton of bricks how much I was going to miss her when she was gone. You know that 'you can't think about it more than 2 seconds without collapsing into a puddle of tears' feeling? Yeah. That.

Staring at myself in the mirror I realized I was *very* jealous that she was going to return home to her own daughter. I felt like a little kid~ stomping my foot whining "I don't want you to leave".

I have often mentioned that I have very few **happy** childhood memories. In fact at one point I seriously considered writing a book~ so strange and uniquely tragic was my life....or so I thought.

And then as I grew up and ventured into the big bad world at the ripe old age of 14........and I suffered quite a few more tragedies along the way... my perspective began to change. Anyone who knows anything at all about my life knows that it has not been what one would refer to as an easy life. And I think *most* folks would agree that what happened to me as a child and as a young woman was, in fact, difficult to endure and in some cases tragic.

However~ I have learned that my mother was wise beyond her years (gods rest her soul) when she would preach to us about 'no matter how bad you have it, someone has it worse...... no matter how good you have it, someone has it better'. As I have grown, loved, lost, married, welcomed children into my home, divorced, married again, attended the funerals of relatives with alarming regularity and sunk so low into a depression I literally felt like I was drowning.....I have realized the wisdom of my mother's words. And the life lessons she was talking about have been demonstrated to me over and over and over again.

Each and every single time I allow myself to think that I have cornered the market on tragedy and loss~ it has been shown to me that although it is uniquely human phenomenon it is NOT unique to ME. Although MY reality is what **I** perceive it to be~ it is also true that every other human has their own reality the way **they** perceive it to be.

So back to the visiting relative~~ many times over the course of the 11 days that she was here we found ourselves talking for hours on end. Talking and laughing. Talking and crying. Talking and happy. Talking and sad. Many times over the course of the 11 days we discussed how various members of my born in family 'have it way worse' than I do. But that comparison is a slippery slope.....and I have always tried to pride myself in my desire to NOT engage in the "Pain Olympics" with other folks.

I truly believe that reality is unique to the person who is living it. I cannot possibly ever fully know what another human being is feeling. I cannot compare *my* pain to *their* pain. Well~ let me rephrase that: I ****should not**** even try to compare my pain to theirs if the reason for the comparison is to determine "who had/has it worse". And every damn time I try to do THAT it ends very badly. Every. Single. Time.

So~ with the newest world tragedies weighing heavily on my mind~ I will attempt to share with you how I am choosing (or at least trying very, very hard to CHOOSE) an attitude of gratitude. Not for the sake of proving I have it worse (and MOST definitely NOT to rub what I have in other's faces)~ but for the sake of the knowledge that even when I have it (what I consider briefly to be) bad~ someone ELSE has it far worse.....

I can choose to see the glass as half empty or I can fill that bitch up the REST of the way with a little gratitude.

It is with that knowledge that I make the following observations:

**My wee Ginger family is by far not the richest of the people I know personally
                BUT we are also by far NOT the poorest.
                Here's to middle class~ which overall is WAY richer than I ever thought I'd be.

**My adult daughters and I do not have the perfectly fabulous relationship, meeting all of the ridiculous criteria I so foolishly set for years
               BUT we **have** a better relationship that we did a year ago.....and even when we struggle in our relationships I never doubt for a moment their love for me.
               Here's to new definitions of what a good mother/daughter relationship is...and to the hope that together we will keep learning and growing.

**I have no job
               BUT I have a husband who DOES and I have unemployment coming in.
               Here's to feeling grateful for all of the glorious things I have been able to do with my time since being unemployed...... like being able to volunteer at my kids school,  being able to go swimming and take an afternoon nap,  not being too tired after working all day~ so that when my kids want to play a game I can almost always say YES.....and a whole host of other things I could not do when I worked 50 hours a week.

**My car has been laid up in the garage for almost 6 weeks....and it has caused some pretty frustrating transportation scenarios
              BUT I am so very fortunate that we are a two car family and I still have a means of transportation.
              Here's to being grateful I am not walking or taking the city bus everywhere I need to go.

**My husband almost never has the same day to day priorities as I do
              BUT he is hardworking, loving, an amazing father and husband AND  we, his family, are always a top priority for him.
              Here's to the grace and learned patience that comes with not always getting my way.

**My mother died when I was 14 and my father when I was 19. The pain of doing most of my "growing up" without the guidance of a good parental role model is very real
             BUT I am very fortunate indeed to have had MANY good role models and I have never been without the love of someone.
             Here's to appreciating that I had parents who despite their faults and early deaths LOVED me and to the gratitude I have for always having someone in my life who believes in me.

**For nearly10 years I experienced the very real pain of wanting a child with a man who wants one and not being able to and it hurt so badly that it almost ruined our marriage
             BUT thorough the miracle and black magic of modern medicine~ we HAVE been able to have 3 beautiful and amazing children together.
             Here's to focusing on and appreciating the children I have. Here's to being acutely aware that there are many women who *never* get to fulfill their dream of being a mother.

**I have experienced the very real tragedy of having a child of mine die.
             BUT he taught me as much about mothering and life as any of my living children AND I HAVE living children.
              Here's to surviving what some women don' the profound connection I have been able to make with others who have also lost a child....and to being able to appreciate my children more than I ever could have imagined.

**I have some very real and very painful medical and emotional conditions
             BUT I am fortunate to have decent healthcare and access to medications and procedures that treat and help my various conditions.
             Here's to focusing on what I *can* do rather than what I *cannot*.

**The house we live in is small and we may outgrow it very soon
             BUT ~ even the fact that I HAVE a house ~ with MY name on the deed is miraculous to be sure.
             Here's to remembering what it was like to be homeless.....and to the profound gratitude that no matter how small the house I live in today~ it is ALWAYS filled with love.

**I have recently had the painful experience of having people I *genuinely* thought were my friends reveal themselves to be selfish assholes and users of people.
             BUT I do HAVE genuine friends. I am most fortunate to have many people who truly love me and I know are there for me when I need them.
              Here's to the knowledge that it can be really healthy to find out who your true friends knowing that I HAVE true friends and the security that comes from knowing that when I need them~ they are there~ always.

**It has been in the high 80's where I live for almost a week now. The heat really fucks with my health and comfort.
            BUT the 'severity' of the weather here is in no human way comparable to the severity and devastation of the weather in many other parts of the country RIGHT NOW.
           Here's to sucking it UP and getting over myself and my "discomfort" with the very painful knowledge that so many families have lost homes, lives, children and life as they know it will never be the same.

So there you have it my friends. With a profound sense of true G*R*A*T*I*T*U*D*E I will go about this week...trying to be the best possible version of myself....making amends when I am wrong.... sending love, light and hope to those suffering so badly.

Peace to you and yours,

Monday, May 13, 2013

The Story of A Boy and his brand new baby Sister: Part 17: Welcome to the NICU

If you have found your way to this chapter I hope that you have first found your way to parts was a very long journey to get to that cold April night in the OR.

Thank you for reading, for your kind and gentle comments and for sharing in the hope and legacy of my dear Son William.

27 April 2008

in the wee hours of the morning.....

I remember waking up feeling like I was having an out of body experience. It was similar to the experience of going under~ only in reverse. At first the voices sounded very far away.....and I wasn't sure if someone was holding my hand....and my legs felt odd and heavy.

Slowly but surely I returned to consciousness......and my husband was holding my hand....and my legs were still numb. The curt and efficient doctor was standing at my bedside talking to my husband. And I could hear what she was saying but it still felt sort of dreamlike. She was talking about the reason my water broke....and I was all wait, what the what? We know why? I shook my head several times to try to clear the cobwebs of anesthesia from my brain. She told my husband that I wasn't out of the woods yet. She said I'd have to stay over on the labor side so they could keep a close eye on me. She told my husband we would talk more when she rounded in the morning. I remember thinking: well thank the gods for that, since I really have NO IDEA what she just said.

I looked over to see my husband looking more tired and more worried than I had ever seen him. It was like he had aged 10 years in the hours I was in the OR. I told him that he should go home and get some rest and he promised that he would~ but said we were waiting for the neonatologist to come over and talk to us.

Now I am not the most patient of women by nature.....and I was immediately filled with dread but felt an extreme sense of urgency for the neonatologist to come: RIGHT NOW. Now my husband IS the most patient of men by nature and he reassured me that they had been waiting for me to wake up and that he had asked the dr to wait and talk to us both at the same time. It was then that I learned that after the incubator and my husband had been whisked from the OR I was in surgery for nearly 2 more hours. And then I was crying and apologizing and I felt like a big jackass because he had been waiting all that time~ not knowing the medical condition of his wife or his daughter.

He was calm and reassuring, he wiped my tears and held my hand. I looked at him and I knew there was resolve and desperation on my face and in my voice. But I felt compelled to say: No matter how this turns out, I can NOT do this again....there is no way that I could survive *this* again. He said: I know honey, you told me that in the OR. Funny, I didn't remember saying it to him in the OR. And at this point I still had no clue as to just HOW true my words were.

And so we waited. And the nurse who never seemed to leave my bedside was **constantly** mashing on my stomach, checking my blood pressure and checking the amount of bleeding I was having. It was actually rather irritating and I really wanted her to stop~ but at the same time knew that she could not.

Then in trudged the neonatologist and a NICU nurse. I could tell immediately that the news was grave. The doctor had a very thick accent. I remember struggling to understand what he was saying and most of my questions were answered with sighs and him repeating the words he had just said only slower.

So this is the news that fellow and the nurse brought to my bedside that night: Our daughter was alive, despite great odds that she was not expected to live in utero for 4 weeks without any measurable amniotic fluid and the fact that she almost did not survive the delivery. They had successfully intubated her and she was on a ventilator. They had gotten IVs started and already given her what seemed to me like lots of medications. The biggest problem (and largest indicator of her eventual survivability) were her VASTLY premature lungs. He went on to explain that one of the main functions amniotic fluid was to help with fetal lung maturation ~~paying no mind to the fact that we had been listening to that song and dance for 4 weeks now: starting with good ole Dr. Fuckface in the world renowned hospital in Pittsburgh what felt like half a lifetime ago. He ended his tale of woe by listing all of the things our daughter might face in the next 24-48 hours....brain hemorrhaging being the most deadly. I asked when we could see her (I mean THAT'S a *normal* question RIGHT?) He looked at me as if I had three heads. He said they would let my husband in to see her for a moment and he could bring me back a picture. I would not be able to physically see her until I was stable enough to be transported via wheelchair.

And with that he and the nurse left the room and said that he would talk to us in the morning. WTH is with all of this "we'll talk more in the morning" bullshit? Incidentally: THAT doctor and THAT nurse became my  two *least* favorite staff members of the NICU. But having absolutely ZERO control over the situation~~ my husband and I chose to try to focus on the positives: she *had* survived delivery, she *was* successfully intubated, she *had already* received medications meant to save her life and also reduce her risks of long term catastrophic health issues.

My husband was ushered to the NICU where it was explained to him that he would need to 'scrub up' and put on a gown and a mask each and every time he wanted to enter the NICU. And they taught him how to do those things. Just after 2 in the morning he returned to my bedside with a picture of the tiniest living baby I had ever seen. She was perfect in every single way: just really, really, really small. To demonstrate the point further my husband had been given a teeny tiny diaper to show me. And he said it was the smallest preemie diapers that were made and it was HUGE on her little body.

I clutched that photo and that teeny tiny diaper like my life depended on it. She looked so very frail, her skin still almost transparent. Her left leg was twisted at an odd angle~ my husband said that the staff had told him that this was a result of her being essentially "stuck" in the same position for four long weeks. And they did not know if it would resolve or be a permanent disfigurement....and truthfully that was the *least* of our worries.

And so it was then that my husband went home to rest and to snuggle our dear living son at home enough for the both of us.

And there in the labor room I stared at the first picture of my miracle daughter until I had memorized each and every single one of her teeny tiny features. It occurred to me that she very strongly resembled my husband and both of my sons....and that thought made me smile.

Throughout that long night I would awaken many times and clutch the photo anew. And each time I would ask the nurse who never seemed to leave my bedside if there had been any word from the NICU. Each time she would say "no" and tell me to rest. And I would clutch the photo and drift off again. Praying, praying, praying to the gods, to William, to the universe ........a prayer now said aloud literally thousands of times in the last 4 weeks:

Please let my daughter survive and please let her be healthy.

Thursday, May 2, 2013

The Story of a Boy and His Sister Part 16: The Delivery; ready or not here she comes

This is the 16th in the series....hopefully if you are here you have found your way to parts 1 thru 15.

Thank you for sharing the journey and the hope.

26 April 2008

24 weeks 3 days

Saturday came..... and I felt crampy...and during my 5 minute shower I had the first 'bring me to my knees' contraction. I timed the contractions for a bit....and then when they were about 3 minutes apart I told the nurse. Well at first they were very doubting "we are not picking up any contractions on the monitor". WELL DUH I have no amniotic fluid and the baby is tiny. And I don't care what your damn machine says~ I'm telling ya lady~ this is my FIFTH go round here~ I KNOW a contraction when I feel it DAMN IT!

Annnndddd then I was bustled over to the labor unit~ where the babies are born.

And there was a nurse who picked up both the contractions and my daughter's heartbeat. And the contractions were indeed about 2 minutes apart now. And the most efficient and curt member of my five doctor team was on call. We would learn later that she has the reputation for being an excellent surgeon~ and I'd have to say I agree.

From the doorway of the big spacious delivery room~ after listening to my daughter's heart rate through several contractions: she looked me straight in the face and said: "you have done all you can....I think we need to call it here. She has to be delivered". And I quietly agreed. And she checked me and I was dilated to 6 centimeters (take THAT doubting nurses!). My self affirming moment was just that: a moment.

And then all of the sudden things began happening faster than I could keep up with. The baby's heart rate dropped dramatically with each contraction...... and with each contraction her heart rate was slower to recover. That one nurse and that one doctor stood next to my bed~~~ and they exchanged a look that was NOT good. And the efficient and curt doctor said: I don't think she will survive through many more contractions. How far are you willing to go with this?"

calmly and collectively
I said
with MORE resolve than I had ever had before or have ever had since
I said:
And she said that even still~ the baby may not live. And did I want to risk surgery knowing that?
And I said: yes
And she began listing possible complications and risks for me.
And I said: I do not care.
And she held my hand and she said: I know but I have to tell you anyway.
And I said: I understand.

And consents were signed and orders given and a deluge of nurses descended upon me....and I was prepped for surgery...tubes and catheters were epidural was inserted....and I prayed and I prayed and I prayed and all the while that one nurse held the monitor and I could hear my daughter's heart beat.

In the middle of this chaos they asked my husband to leave the room~ and I don't know if my friend just happened to call him at that moment~~ or if he had begun making calls. But before I knew it I heard her voice outside of the delivery room~ asking to see me. And I said "please let her in" and they did. I do not think that it coincidence that she came. We prayed. She held my hand~ she said she believed that everything was going to be ok. And she helped me to believe it too. She just so happened to have her camera in her purse and had the foresight to give it to my husband.

It seemed like 30 seconds but surely it was longer than that~ and I was in the cold, sterile room of the OR staring up at the ceiling. The anesthesiologist explained that he would at least try to keep me awake until they got the baby out~ but he could not promise. And I knew that he was thinking if I did not see her in the OR, I may never see her alive. The fact that they let my husband come in gave me hope. And then we waited....the efficient and curt doctor said that she wanted the neonatologist to be present for the delivery~ said that it would be the best chance ~ so the epidural was turned up and the contractions stopped...and I could hear the steady and rhythmic beat of her heart. And I prayed.

In these sorts of situations I am not sure if it is good to have first hand knowledge of what was happening on the other side of the big blue sheet....or if it brought me more worry.

In any case~ I did know....and as soon as the neonatologist arrived they delivered my daughter into the world....their was no reassuring indication accept for the doctor telling the nurse the time of delivery and the nurse repeating the time back to her. When my husband stood up to try to see her he was quickly commanded to sit back down.

I did not know where my daughter had been taken~ but then my husband said that he could see that they were working on her in a small room adjacent to the OR....all he could see were the backs of the nurses and doctors......nothing to give hint as to what was happening.

And on the other side of the big blue sheet I could hear that things were not going well. Calm voices asking for instruments became strong commands demanding action. I could hear the tell tale signs: we need more sponges, clamp here, cautery, DAMN IT cautery, get me the Hemabate NOW. And there in the OR on a cold April night it was surreal to realize that both mine and my daughter's lives hung in the balance....and I could tell that the anesthesiologist had given me more sedation~ I wanted to say : NO, NOT YET.....but I was unable.

And then as if in slow motion the HUGE incubator holding our very tiny and LIVING daughter was wheeled up to my face. My husband~ openly sobbing now said: she is SO much bigger than William, my God she is beautiful. And just that fast the incubator was whisked away and so was my husband.

Very sleepy now~ hearing voices as if they were very far away.

The efficient and curt doctor said to the doctor who was assisting~ who's name I did not even know~  in a clipped and self assured way "I know damn it, but I am trying to save her uterus too".

And I remember thinking 2 things:
1. while it was refreshing that the efficient and curt doctor was human and used the swears when frustrated: it was alarming that she WAS frustrated.
2. I did not give a flying fuck if she saved my uterus or not~ or even if she saved me. I just wanted to scream that it did not matter.

My very last thought before going under was:
please do not worry about me or my uterus.....please dear god...please just go and save my baby.

And meanwhile in a NICU not so far away a team (a LITERAL TEAM) of doctors, nurses and technicians using all of the tools and medications available at the time~ worked feverishly to save one very tiny baby girl~
with dark hair and green eyes
weighing in at a whopping 1 pound and 6.7 ounces
measuring 11.75 inches
this miracle child of ours~ that science had helped us make and Hope had helped us keep
having gone 4 full weeks exactly without any measurable amniotic fluid

was our very own Wee Tiny Princess and her name is Faith