Saturday, December 31, 2011

Just you wait...

For nearly six months now, I have smiled as everyone coos over our daughter, compliments her beauty, and comments on how sweet she is.  As her Mommy, I HAVE to agree.  I gush on how big she is and about her milestones.

Then comes the negative...

"Wait until she starts crawling, she'll keep you busy." "When she starts walking, you won't have it so easy."  "Take advantage of the milk only time, when she starts eating solid food, her poos won't be so pleasant." "Just you wait until she hits the terrible twos, she won't be so sweet anymore."  "You think she's big now, just you wait until she gets THIS big (pointing to their child)."  "Just you wait until she hits puberty, she'll be driving you crazy." "Oh, when they hit the age when they are boy crazy,you'll really have your hands full." "Before you know it she will off to college and married, then you'll miss these days".  "Just you wait, she won't always be this cuddly."

Now, I REALIZE that these well meaning comments are indicators of the future realities I MAY face, yet I am bothered by the comments. All of these comments refer to periods in a child's life that is relative to the parent.  We are not there yet.   I am trying to live in the "now", enjoying every coo, noise, sound, peaceful moments, watching her sleep, laughing at her antics, enjoying my daughter where she is right now.  I get it, these days won't last forever and before I know she will be grown and creating a life of her own, but I don't need to focus on it now, worry about it now, think about it now, or even hear about it now.

The only reason I can think of for people to make such comments is that they long for the days that I am experiencing now.  Maybe they didn't treasure these days or maybe they treasured them so much, they wish there were more times like those to come.  The truth is, these moments come once in a child's lifetime.  Why do they rain on my parade by sharing their own struggles?  Why negate my joy in the now, by telling me about the trials to come?  Can't I enjoy these moments that I will never have again with my daughter?  Even better, why can't they?  Why can't they celebrate her with me?

I won't be able to appreciate these memories fully if I am worried about what's to come.  Reminders of the challenges ahead not only rob me of the pride in the  joyous moments I have with my daughter but they are also aimed at stealing my focus away from the beauty of now.  Living in fear of the future will only lead to guilt and regret that I didn't appreciate these days of milestones, learning, progress, love, and cuddles.

I take pride in living in the now, relishing in my child at THIS stage in her life, and appreciating that these times are fleeting and I have to take it all in and hold it close to my heart.  I will strive to put these foreshadowing comments in the back of mind, if they go there at all.  I will continue to enjoy and value every moment of my child's life without fear of obstacles to come.   By doing this, I will be able to look back and remember fondly how I took the time to focus on my daughter during every stage of her life.

Most of all, I will strive not to negate the gushing of others about their own little ones by sharing my own "Just you wait".

Those of you who have made these comments to me or anyone else, I ain't mad atcha!!  Just exercising my free will to speak my mind just as you have done.

I know parenting challenges are eminent, until then, I will take solace in the notion that LL is thriving, growing, and happy.  She's a sweet girl, getting so big, and is the absolute prettiest baby girl I have EVER seen!!!  

Thursday, December 29, 2011

Speaks volumes...

Adrian came home again last summer
Things just haven't been the same around here
People talk
People stare
Oh, Adrian, come out and play

An unfortunate accident in a canoe
Dr. said, 'I'm sorry, not much I can do'
The air was so still
His eyes did not blink
Oh, Adrian, come out and play

Little Mary Epperson liked him
She vowed always to watch after him
Still he did not move
Dr. said it's no use
Oh, Adrian, come out and play

BRIDGE: She sat by his side, watched the years fly by
He looked so fragile, he looked so small
She wondered why he was still alive at all

Everyone in town had that 'I'm so sorry look'
They talked in a whispered hush, said
'I'd turn the machines off'
But still she sat by his side
Said, 'life he won't be denied'
Oh Adrian, come out and play

Yellow flowers decorate his bedroom
Sign above his door says Welcome Home
But he just sits and stares
He's awake but still not there
Oh, Adrian, come out and play


And little Mary Apperson grew up lovely
She still comes to visit him on Sundays
He's like an unused toy
He's got big hands but the mind of a little boy
Oh, Adrian, come out and play

Adrian came home again last summer
Things just haven't been the same around here

Wednesday, December 28, 2011

Into the light

Yesterday, I did something not recommended, but I am glad I did it.  Upon changing my Facebook page to the Timeline format, I was able to view posts from the Trey's birth and passing.  Before I knew it, my face was soaking wet from tears, not about Trey, but from the messages of love and condolences received from all who loved us and even some distant but new friends drawn in by the story of our little boy.

I was reminded of how dark that time was in our lives.  Our lives were in full colorful loving light when we found out we were pregnant with Trey and throughout most of the pregnancy our hearts were bathed in that light which slowly started to dim as we heard more and more issues with our son arise.  The lights fell to half mast when he was born and placed on my bosom not breathing.  In the looming darkness we prayed, begged, waited, hoped, wished, and held each other while the little light of our son tried not to go out.  On April 4th, 2009, our world went black as we said good-bye to the little boy made from love, living solely through love, and being set free by love.  The only light left was a single tinkling star shining down from Heaven down to us that was Trey, a sorrow filled pair of parents holding a wavering flickering candle between us.

As the days and weeks past, the flicker of light from friends and family dimly shown around us.  It seemed like it should have been brighter as we discovered the plethora of people who truly loved us, yet the love that we felt for our son produced still such an overwhelming darkness.  As months passed, more stars appeared in the sky, twinkling lights created by the people and things that Trey's heart had touched.

A year, then two found us with a sky full of stars and a new dawn peeking through, the pregnancy of our daughter.  The sky was still not fully lit, but it brightened with the dark purples and reds that the rising sun brings.  Our healthy little girl shown so much light on our world, but like our very own planet, we know that there is another side to our world that still lay in darkness and we revel in our thriving second child, we know there will still be times of darkness as we long to have watched our son thrive the was she does and be a big brother to her here on Earth.

It is now, that I think of the "the light" that people claim to see when the have a near death experience.  I am convinced that the light is merely the light of love collected over a lifetime, love lost, love given unconditionally, love hidden.  This light of love is showered on a person upon entering Heaven as a reward for a life well lived and well loved.

Grieving can be dark, but I am learning that there is great love in grief, which in itself is solely the price of loving, which is true beauty.  Yet grief can also be light, when the griever is stuck in the darkness, the loving light of others, including the one they grieve for, can brighten their world.

I look forward to a life well lived and loved so that the years will bring much more light into my life.  I will freely and unconditionally give love to all who love me and even those who need to be shown such a love.  Loving my two children, my husband, my family, my friends, yes, even my enemies hopefully will replenish the darkness that living without my son causes.  I long to return to the light of life and love that we had before our son came to us and left us so sudden.  Already, the days, weeks, and months are brighter.  Many, many, many years from now, I hope to enter Heaven feeling the lifetime of loving light from the son we gave to Heaven so lovingly almost three years ago.

Until then, I can only hope that Trey is collecting the unconditional love I give, the love I feel I lose, and the love I hide and that he will shower that love on me when I meet him in Heaven.  I hope to be blinded by the light of love. 

Sunday, December 25, 2011

She's onto us...

So the last month has brought the end of breastfeeding and the beginning of LL's holiday season.  After months of frustration about my supply, I gave in to my need for sanity.  I watched my supply never wane but her appetite grow and grow.  The appetite she gained from her father could not keep up with my supply, which, incidentally comes from an abundance of breast which some might assume a breast milk supply is equally abundant, NOT SO!!! The extreme Mommy's guilt has been thwarted by repeated attempts by my friends and family to assure me I gave her the best of my breast milk in the early months.

Also over the last month she has delved into the world of veggies and fruits.  No more are the days of nasty cereal alone.  The more solid food she gets the more she responds the spoon being "airplane" driven towards her mouth. She loves pickles, she'll suck the color out of them really, whether it's the cold soothing her gums or the new interesting taste, the fact that she loves pickles brings phallic comments from some, but brings nothing but adoration from those who are close to her. 

She has also started "sleeping through the night" more regularly, I put quotation marks around it because the minute I declare it she will wake up  three times a night, but if I disguise it with quotation marks, she won't be able to detect then defect it. I have also dabbled in simply laying her down in her crib to take naps instead of rocking her to sleep and hovering over her to make sure she stays asleep.  She has surprised me by playing a little, crying a little, then crashing out.

She's full of giggles and new noises while she attempts to roll over and put her feet in her mouth.  She enjoys working in her "office" (excersaucer) and insists on be held sitting up.  She knows just how to make us laugh and smile and how to get her way.  Yep, I'd say she's onto us!!

And I am enjoying every minute!!!

Monday, December 19, 2011

We fell in love...


Yellow diamonds in the light
And we're standing side by side
As your shadow crosses mine
What it takes to come alive
Because the way I'm feeling I just can't deny
But I gotta let it go

We found love in a hopeless place
We found love in a hopeless place
We found love in a hopeless place
We found love in a hopeless place

Shine a light through an open door
Love and life I will divide
Turn away cause I need you more
Feel the heartbeat in my mind
Because the way I'm feeling I just can't deny
But I gotta let it go

We found love in a hopeless place
We found love in a hopeless place
We found love in a hopeless place
We found love in a hopeless place

Yellow diamonds in the light
And we're standing side by side
As your shadow crosses mine
What it takes to come alive
I because the way I'm feeling I just can't deny
But I gotta let it go

We found love in a hopeless place
We found love in a hopeless place
We found love in a hopeless place
We found love in a hopeless place

Thursday, December 8, 2011

+ 1

Dear Angel Steps blog readers,

At the bottom of all of my blog entries is a +1 button, please press it if you find that my blog is helpful, enjoyable, or by any means favorable.  The more +1 buttons I get, the more popular my blog and the more mothers of angels see it.  Thank you in advance for spreading the word!!!  

Sunday, December 4, 2011

Don't Give Up

in this proud land we grew up strong
we were wanted all along
I was taught to fight, taught to win
I never thought I could fail

no fight left or so it seems
I am a man whose dreams have all deserted
I've changed my face, I've changed my name
but no one wants you when you lose

don't give up
'cos you have friends
don't give up
you're not beaten yet
don't give up
I know you can make it good

though I saw it all around
never thought I could be affected
thought that we'd be the last to go
it is so strange the way things turn

drove the night toward my home
the place that I was born, on the lakeside
as daylight broke, I saw the earth
the trees had burned down to the ground

don't give up
you still have us
don't give up
we don't need much of anything
don't give up
'cause somewhere there's a place
where we belong

rest your head
you worry too much
it's going to be alright
when times get rough
you can fall back on us
don't give up
please don't give up

'got to walk out of here
I can't take anymore
going to stand on that bridge
keep my eyes down below
whatever may come
and whatever may go
that river's flowing
that river's flowing

moved on to another town
tried hard to settle down
for every job, so many men
so many men no-one needs

don't give up
'cause you have friends
don't give up
you're not the only one
don't give up
no reason to be ashamed
don't give up
you still have us
don't give up now
we're proud of who you are
don't give up
you know it's never been easy
don't give up
'cause I believe there's the a place
there's a place where we belong

Thank you to my cousin who passed on this song by Peter Gabriel and Kate Bush...

Wednesday, November 30, 2011

Disturbing Dream

I had a dream the other night that has haunted me ever since, causing me to have trouble falling asleep in contemplation and interpretation of the dream.  It bothered me so, that I debated whether to write about it or not.  So enter my dreamworld at your own risk...

In the dream I was taking a "Scope" class...literally.  We spent our class time looking through microscopes, periscopes, telescopes, orthoscopes, and probably looking at horoscopes and listening to stethoscopes were on the syllabus too. 

In my dream, I was attending one of my "Scope" classes which happened to be held at the mall, not sure why, maybe we were supposed to "scope" out good deals while we were there.  We had a choice on whether to go to one classroom and view a comet through a telescope or witness the anatomy and physiological process of a miscarriage.  I gravitated towards the microscope room with my heart filled determination, as I am a life long learner, and maybe what I would see would help me figure out how to prevent miscarriages in the future.  I wanted a "cure".

As I went into the microscope classroom, which thinking back it should have been an orthoscopic type viewing, so I think it's ironic that this tragic event would be viewed under a microscope when in reality, it's often something considered taboo to discuss.  I was the only one in the class, the professor motioned me forward to view the slide and I approached the microscope viewer and peered in.  There I saw a little bean shaped human, much like I had seen in my own early ultrasounds and a flittering object I could only assume was the heart.   I smiled at the professor knowing that this little human "bean" was just fine, but he motioned me to look on.  As I watched, I realized things were going south, not quite sure how and I predicted the horror I was about to witness.  I ran from the room in fear, sorrow, anxiety, panic, and maybe even disgust and ran straight to the room where most of my classmates were staring with wonder and amazement at the comet they saw using the telescope.  I waited nervously, thinking back on the other classroom, and fearing what was going on while I waited to see a wonder of the universe that always brought pleasure, never heartache.

When my turn finally came, I stared into the telescope and was disappointed with what I saw.  There in front of me in the night sky, was a poorly, pixelated, stretched out version of a comet clipart.  I looked back at the people congregating outside of the classroom and wondered what they viewed that was so awesome to them, it was a sham to me.  I left frustrated and dared to return to the other room out of curiosity, the room was empty.

I woke up from that dream in a cold sweat, feeling guilty for leaving that little embryo to die alone, guilty for wanting to watch in the first place, guilty for not sticking around to try to learn something so I could save the world from miscarriages.  But most of all I questioned my choices, my choice to choose the microscope room first, then to flee, then to return if only to ogle.

After pining over this dream for a couple of nights, I had some interesting thoughts.

As I stated, most of the class was looking through the telescope at something that amazed them and essentially made them happy, no one wanted to look through the microscope and witness a tragedy to human nature.  The same is true with most things, we can talk about the wonders of the world and our universe, but when it comes to tragedies, no matter how small, if we can't fix them before they happen, there is a tendency to avoid them all together, not so much true for the sufferer, but those unaffected tend to move forward or even away.

In the dream, I was all excited to see the microscope slide and was lost in the possibilities that it might provide me, that I might provide to the world.  But when my brain wrapped around the solemn circumstances about to unfold, I turned away, my perseverance wavered, well down fell out from under me and I didn't want to be anywhere but in the awesome light of the comet.  Whether it was that I didn't want to experience the "demise" (as my OB so eloquently put it) of another human in my life or that I didn't want to experience someone else's pain when I had so much pain piled on my shoulders already.

The truth is, not many of us would have chosen to look through that microscope, but there are doctors, med students, and professionals that do, to observe, to learn, to try to prevent.  I guess that's not my lot in life and I am ok with it. 

I realized that I am like the ironic microscope, I can shed light on these tragedies that effect women by the minute, shine a light for them to see and know that they are not in the darkness of grief alone, and shine a light on those professionals trying to make a difference trying to prevent these horrific ends.  Anyone can look through the telescope to see the beauty of the universe, but looking at beauty all of the time can make your view "pixelated", out dated, unclear, guarded, out of focus. 

I am proud of my fellow "microscopes", whatever their cause.  They shine lights on their causes and through their pain and their passion, they strive to learn, grow, raise funds and awareness, support, and make a difference in the lives of those who are affected. 

As for my dream and what it means to me, I might not want to delve into the big, bad and ugly, but I also don't want to spend my life pretending it's not there.  Pieces of my heart, soul, and mind will always fight for the cause, advocate, educate, and fund organizations that support families with CHARGE, families who have lost children to CHARGE, or organizations that promote awareness and support for Baby Loss and Baby Loss families. I will continue to use my own "scope" to view the world around me, the "things" that matter, the people who count, and the love and lives that make the world looking at in the first place.

Monday, November 28, 2011

Holiday Ideas for Grieving Parents

From: Holiday Ideas for Grieving Parents, Child Loss, Christmas ideas, Angel Hugs Grief:

I WILL BE THERE Sharon J. Bryant

Mom, tomorrow I will be there
Though you may not see
I'll smile and remember
The last Christmas, with you and me

Don't be sad mom
I'm never far away
Your heart has hidden sight
My memory will always stay

I watched as you touched the ornaments
Sometimes a tear was shed as you did
I touched you gently on your shoulder
And on tiptoes I proudly stood

I'm only gone for a little while mom
I'm waiting for the day to be
When God calls out your name mom
We'll be together, just you wait and see

But until that time comes
Carry on as you did when I was there
I tell the angels how much I love you
There are angels here everywhere!

I stand behind you some days
When I know that you are sad
I want you to be happy mom
It would make my heart so glad

So on this Christmas Eve, Mom
Think of me as I will be thinking of you
And touch that special ornament
That I once made for you

I love you mom and dad, also
I know you know I do
And I'll be waiting here for you
When your earthly life is through

Your child in Heaven

'via Blog this'

So This Is Christmas....

Last year at this time, I had everything to feel hopeful for, with our Rainbow Baby in my belly and our Angel Baby in my heart.  My entire being was beaming in the anticipation of our beautiful blessing I was carrying and the pride I felt that our son has picked her out and sent her down to us.  Now, as she stares at blinking lights with wonder, and dons cute holiday outfits and beautiful Christmas dresses and giggles at our attempts to sing Christmas carols, an emptiness continues to dig at me, one she has no idea exists, at least I hope she can't read it in my eyes.  Her eyes twinkle with the lights of the season and the wonders that exist in her life right now, holiday season or not.  Everyday is a celebration with her, but this holiday season is extra special for our family now that she's in it.  Yet why do I still feel like every Christmas since my son has been gone finds me with the symbolic coal that naughty children are supposed to receive.  Trey's absence is like a bag of coal in my stocking every year.  Will I ever feel different?  How could I?  One of my children is missing from the festivities.  Even worse, does my precious daughter sense my pain, my sorrow? Will she understand?  What am I stealing from her, because of my grief, that she rightly deserves? Will she ever forgive me? Will Trey? Will I?

I long for the "happy" to be put back in our Holidays...

Tuesday, November 22, 2011

Monday, November 21, 2011

What Do They See

I spend so much time swimming in my own head and drowning in my own heart, but I have often wondered what others see.

Do they see a happier couple raising their daughter?  Or do they look at three of us and remember there should be four? Do they imagine a little boy running around? Does anyone see the void in the family picture? Do believe our family is whole?

I bet their hearts warm at the blessing that is our little girl. But do they quickly remember the little boy that also blessed our lives? Do they worry about something happening to our daughter too? Do they cringe at that thought and what would happen to us in that sad event? Are they sad that LL will never know her big brother in the flesh?  Do they marvel at what a good big brother he would have been?  Do they pour over our children's pictures searching for similarities? Do they wish they could've seen Trey's sweet face as they look upon our daughter's? Is there a longing to have been able to hold our first born as they hold our second born? Do they thank whatever higher being they recognize that this one is healthy? Do they think that now that we have her, we can move on?

No doubt that they see a couple who has been through hell finally get the healthy baby they have always dreamed of.  But do they see a husband and a wife struggling with their new parental roles when the second time around should prove them a little more experienced? Do they see the evolved grief that comes with having a rainbow baby?  Do they see how hard it is to express an evolved grief that involves a blessing in the midst of a nightmare?  Do they think she will bring us closer the way he did? Do they think we are less sad now that we have her? Do they think she makes it all better?

I am sure they see our smiles and hear our laughter. Yet do they see the tears waiting to pour out? Do they hear the song lyrics they way we do now? Do our faces show the stress of trying to hold ourselves up for our little girl and each other?  Do they see the toll that holding our chins up has taken? Do they see the pride we feel for our little girl and feel the longing we feel to be with our son as well? Are they glad they're not us? Will we forever be known as the couple who lost a baby?  Will they ever look at us without thinking of Trey? Do they still hurt for us? Do they wish we would just move on? Do they secretly hope he never comes up in conversation? Do they realize that we hope he comes up in conversation sometimes just so we know he hasn't been forgotten? Have they forgotten him? Will they?

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Sunday, November 13, 2011


I want one more, one more child.  I have always wanted two boys and a girl and at this point I am 2/3 there.  I am conflicted in believing that I am entitled to have one more after all we've been through, yet I know none of us are ever entitled to anything in this life, no matter what we've been through.  I also know that just because it's in YOUR plan doesn't mean it's in THE plan, whether one believes in God's plan, nature's plan, karma, or fate.  And even when you get what you want, it's not always in the pretty package that you wanted. I know this all too well.  I wanted Trey, but my want wasn't enough to save him.  My head knows now that I was never meant to have my son here on earth for a lifetime, my heart has a harder time accepting it.  My heart has been in love with my children since I dreamt them up and placed them in my plan, all three of them.  I've had my heart broken, shattered really, by the reality of my first born.  Now, with my rainbow baby I get to realize how shattered my heart actually is.  She's amazing and doing beyond amazing things and I enjoy them all. I am really trying to steer myself away from getting caught in wondering how all of these amazing milestones would have played out with Trey, but I find it just as impossible as thinking about my living child without thinking of BOTH of my children.  I am the mother to two children, some wouldn't recognize that about me, it sounds strange saying it to myself, cause it's not what I see when I look at our family photos, three smiles, but where is the fourth heart.

Loving our daughter is the antithesis of loving our son, the love for both if them is more grandiose than I can express but loving my daughter doesn't hurt.   Now I can only hope as we smile, giggle, cuddle, coo, sing, babble, soothe, and love our way through each day with her that this is not the end of the line for us in the kid department.  I am officially addicted to loving my children in their own special yet equal ways. I want one more shot at this Earthly motherhood thing, I want the third child I have always dreamt I would have. I talk to Trey all the time about it.  I hope that as soon as he sent his little sister down to bless our lives that he went on a hunt for a little boy who would complete our family. For our daughter to have a sibling would mean so much, someone to go through life with, my heart wants her to be able to call him brother.

I will be beyond grateful to have another child, daughter OR son.  One might think I only want a boy so I can have the experiences I missed with our son, and that would be selfish, just to have a child to fulfill a void.  But I want a second boy to fulfill the dream I have had since childhood, before I married my best friend, before we spent our fourth wedding anniversary talking about our son's quality of life, or lack thereof, and how our love had to set him free, to go to heaven and not suffer anymore.  A third child will not make me or my life complete, nothing will, without Trey there will always be a void.  A third child would complete my dream, I would be able to beam about the three children I always wanted, a small concession for the sacrifice made for the love of our first born son. 

So I will keep hoping that Trey has a little one standing beside him in Heaven, waiting for the right time to send him...or her down just as our daughter waited with him until her time came.  I might not be entitled to my dreams, but I AM entitled to dream.

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Tuesday, November 8, 2011

Metaphor cures for writer's block...

So when I finally get to a point where I have time to gather my thoughts and write, all I am thinking about is marshmallows, they're white, fluffy, soft, and sweet, but like most anything in life, too many of them will leave one feeling saturated and weighed down...that's how I've been feeling lately.  I have enjoyed the white, fluffy, soft, and sweet aspects of life with our Rainbow Baby, but I feel weighed down and saturated with the sick feelings that come along with not having her brother here.

Living in the smiling, cooing, gurgling, giggling, peaceful, happily active moments with our daughter is easy.  It's when the sweet saturation is over, whether she's asleep or I am without her, that the sickness sets in.  I start wondering how those same moments I enjoy so much with her would play out with Trey, I'll never know, hence the sickly stomach feeling anyone can get after diving into too much sweetness.  I am so grateful for our daughter and the marshmallow goodness she feeds to my heart and soul, I used to have that solely with Trey, I still do remember him fondly, but I don't have the sweet living moments that I have with his sister...and that creates a sickly sadness.

Someone once said to me that now that I have our little girl, I can create new dreams, that the nightmare of losing our son is in the past.  I beg to differ, it is ever present and ever changing with each new day, especially with each new milestone we get enjoy with LL.  Losing him will ALWAYS be a nightmare, but having her proves that even in nightmares, there is a point when we are awakened to find that it is only a nightmare and not all encompassing. 

Such is the truth with my marshmallow metaphor, or lame attempt at one diving into the sweet moments with our daughter, there's bound to be some not so sweet moments of remembering Trey as he was, never enjoying those same moments with him. 

I can only hope I am not robbing LL of anything by lamenting over her big brother, I can't help it, he still is my child, and doesn't every parent think on their child, not matter what state of life? 

I am immediately reminded of that pendulum concept, which me not remembering what it's called would drive my husband nuts, but it's when they say "each action has and equal and opposite reaction", that's what it's like.  As much as we enjoy and love our daughter and all of her growth and health, when the pendulum swings back to Trey, it's an equal reaction, just a different feeling, and opposite feeling.  Whereas my heart warms and fills with our daughter, it seems like it breaks all over again for my son.  The silence in mid swing is deafening, I wish I could enjoy them both the same...maybe 100 years from now in Heaven, when I hold all of my babies together, until then I am the pendulum, or is it the marshmallow?

Thursday, October 27, 2011


Since the birth of our Rainbow Baby, I have fallen into a new grief, a new mourning, a new sadness over the loss of our first born.  I have fallen heart hard that I can't find the words nor the time to write, the latter being somewhat of a blessing, because when I am with my Rainbow Baby, the sadness has a hard time creeping's in my alone time, whether in the car, the shower, while she's napping and I am rushing around trying to get ANYTHING done in the house, and sleeping, that the sorrow rears it's ugly head, and those are the times my mind is trying to focus on those activities so the expression of my sadness takes a back seat.  It's definitely a new world and I hope to he able to get time write it out of my system.  In the mean time, I heard the song below this morning and the tears made their way from my heart to my eyes.  Literally, it doesn't mean much to me, but in a figurative sense, it represents this new grief I am traveling through, a life that goes on, while his passing stands still...I have changed the color of the words and phrases to blue that catch my tears every time I hear them...

 Round Here by Counting Crows

Step out the front door like a ghost into the fog
Where no one notices the contrast of white on white
And in between the moon and you, angels get a better view
Of the crumbling difference between wrong and right

Well, I walk in the air between the rain
Through myself and back again
Where? I don't know

Maria says she's dying
Through the door, I hear her crying
Why? I don't know

Round here we always stand up straight
Round here something radiates

Maria came from Nashville with a suitcase in her hand
She said she'd like to meet a boy who looks like Elvis
And she walks along the edge of where the ocean meets the land
Just like she's walking on a wire in the circus

She parks her car outside of my house and
Takes her clothes off, says she's close to understanding Jesus
And she knows she's more than just a little misunderstood
She has trouble acting normal when she's nervous

Round here we're carving out our names
Round here we all look the same
Round here we talk just like lions but we sacrifice like lambs
Round here she's slipping though my hands
sleeping children better run like the wind
Out of the lightning dream
Mama's little baby better get herself in
Out of the lightning

She says, "It's only in my head"
She says, "Shh, I know it's only in my head"

But the girl on the car in the parking lot
Says, "Man, you should try to take a shot
Can't you see my walls are crumbling?"

Then she looks up at the building
And says she's thinking of jumping
She says she's tired of life
She must be tired of something

Round here she's always on my mind
Round here, hey man, got lots of time
Round here we're never sent to bed early and nobody makes us wait
Round here we stay up very, very, very, very late

I, I can't see nothing, nothing round here
You catch me if I'm falling, you catch me if I'm falling
Will you catch me? 'Cause I'm falling down on you

I said I'm under the gun round here
Oh man, I said I'm under the gun round here
Well I can't see nothing, nothing round here

Sunday, October 23, 2011


She smiles,
she coos,
she sings,
she takes everything in,
she holds me just as tight and snuggly as I hold her,
she wiggles,
she giggles,
she grows,
she sighs,
she makes bubbles,
she enjoys,
she finds wonder,
she holds my hand,
she listens,
she learns,
she exudes a sense of humor,
she loves,
she knows,
she chills,
she snoozes,
she lives...

I missed ALL of that with him...

Friday, October 14, 2011

I NEED to blog...

...just having trouble focusing, thinking, finding time, staying awake...but I NEED to expel...there's lot's going through my mind but more going through my heart and if I could reign it in...but preferably let it out...

Sunday, October 2, 2011

Baby Loss Awareness Month

Thought this is the third Baby Loss Awareness Month I have been through, this one seems to be the hardest...

Saturday, September 24, 2011

Never Is a Promise

This is another song I feel a strong connection to.  To me, it's an honest answer to someone claiming that they know what you are going through and how you're feeling.  I find myself UBER glad that there are more people who don't have to live this loss than not.  I wouldn't wish this journey on anyone, but at the same time, it's a journey of love and it's mine!  I will walk with pride!

Never is a Promise by Fiona Apple

You'll never see the courage I know
Its colors' richness won't appear within your view
I'll never glow the way that you glow
Your presence dominates the judgements made on you

But as the scenery grows I see in different lights
The shades and shadows undulate in my perception
My feelings swell and stretch I see from greater heights
I understand what I am still to proud to mention, to you

You'll say you understand
But you don't understand
You'll say you'll never give up seeing eye to eye
But never is a promise and you can't afford to lie

You'll never touch these things that I hold
The skin of my emotions lies beneath my own
You'll never feel the heat of this soul
My fever burns me deeper than I've ever shown to you

You'll say "don't fear your dreams"
It's easier than it seems
You'll say you'd never let me fall from hopes so high
But never is a promise and you can't afford to lie

You'll never live this life that I live
I'll never live the life that wakes me in the night
You'll never hear the message I give
You'll say it looks as though I might give up this fight

But as the scenery grows I see in different lights
The shades and shadows undulate in my perception
My feelings swell and stretch I see from greater heights
I realize what I am now too smart to mention, to you

You'll say you understand
You'll never understand
I'll say I'll never wake up knowing how or why
I don't know what to believe in
You don't know who I am
You'll say I need appeasing when I start to cry
But never is a promise and I'll never need a lie

Basket Case

I was driving home last night from my good friend's birthday celebration and for some reason I was WAY deep in my head about Trey so I decided to seek some music therapy via my ipod.  I selected a playlist, but ended up listening to Sara Bereilles and heard this song for the first time.  I think EVER Baby Loss Parent can identify with this song.  I didn't sing along last night, I just listened...

Lyrics | Sara Bareilles lyrics - Basket Case lyrics

Tuesday, September 20, 2011

Matters of the Heart

So LL has to go to a Pediatric Cardiologist on Friday to have a heart murmur checked out.  Part of me isn't worried, as she probably has the same thing I do.  Every few months, I am going about my normal day, my chest will suddenly hurt when I take a breath.  I slowly breathe through the discomfort and in moments it is over until another few months passes.  I have never had treatment for my irregular heartbeat but it is noticed and monitored when I am under medical care.  Trey also inherited an irregular heartbeat from me, though that was the least of his problems.  So, I am pretty much in good spirits about this development, until the wheels in my head start turning...

All of the ultrasounds of our daughter that were taken by the neonatal specialist whose main specialty was neonatal cardiology.  I am sure he was chosen to take care of us during our pregnancy due to all of the heart complications that Trey had.  He spent LOADS of time searching every nook and cranny looking for any abnormalities, whether Trey had them or not.  He also listened to her heartbeat from different angles.  I bet we have more pictures of her heart than any other body part.  He also looked for other signs of CHARGE such as a clef palate or deformed ear.  We were beyond relieved every time he told us that everything he was seeing in her was healthy.  So you can imagine my surprise when, with all the time he spent looking at her heart, that a murmur could be missed.  Maybe they can't tell about stuff like that in utero?  Maybe the murmur is so minute, that it was impossible to detect, even with the best medical equipment.  Maybe the murmur has developed since the last ultrasound.  These are the thoughts that run through my head, but the last one ESPECIALLY scares me.  

Our daughter hasn't presented with any breathing difficulties or chest pains, yet who knows what's coming.  Trey's CHARGE diagnosis slapped us upside the face and downside the other.  

I remember the panic in the midwife's reaction that I had not yet been seen by the neonatal cardiologist after suspicions of a heart problem arose.   I remember the two hours I had to lay on the ultrasound table in pain (that I would later learn were contractions) while one neonatal cardiologist after another came in to look at Trey's heart only to not be able to see all four chambers of his heart.  I remember the flood of tears as the head NC Specialist telling us the extent of his heart problems, that it was so serious we were going to have to go to a special hospital for further testing, although I am sure I have blocked out the name, it was THAT severe.  I remember scouring the internet with my husband that night looking for ANY information on the heart condition that Trey had, which was also blocked out when CHARGE was diagnosed.  I remember the brave face I put on when I went into work and tried to explain to my co-workers why I had missed the baby shower they were supposed to throw for me the day we were at the NC.  Then I remember the next day...being admitted six weeks from my due date into the hospital.  I remember the specialists checking Trey's heart rate more frequently than my contractions were.  I remember wondering if their visits were THAT frequent, why didn't they just take him out of me via C-Section.  I remember him not breathing when he was born and screaming at everyone in the room to make him breathe.  I remember never seeing him without breathing equipment.  I remember the doctor telling us about CHARGE.  I remember hoping for machines to slowly not be needed anymore as we waited for a bed at the children's hospital.  I remember the day they called us and told us he was being transferred and I remember being told by the Dean of Medicine of the children's hospital telling us "I'm afraid you haven't been told the whole story", yes, I quoted him.

So this brings me to Friday's appointment, I am going solo as John did the two month shots.  For some odd reason, I can't talk to Trey about this one.  I know he is with her, always looking out for her, but he can't change the wheels that are already in motion in her physiology.  I suppose Friday I will ask for his strength, it just hurts so much to reach out to him, when his heart... had so many problems (I won't EVER say his heart was weak).  

So for now I exhale, and hold onto hope that our little girl's murmur is nothing more than what I have and that she WILL grow out of it as the pediatrician says.  Bless her little heart!