Wednesday, February 29, 2012

Rare Disease Day

Rare Disease Day is an annual, awareness-raising event coordinated by  

EURORDIS at the international level and the National Alliances of Patient 

Organisations at the national level

February 29, 2012 marks the fifth international Rare Disease Day coordinated 
by EURORDIS and organized with rare disease national alliances in 25 European 
countries.On this day hundreds of patient organisations from more than 40 countries
 worldwide are organizing awareness-raising activities converging around the slogan 
“Rare but strong together”.  Activities will take place across Europe, all the way 
to Russia, continuing to China and Japan, in the US and Canada, and as far as 
Australia and New Zealand! Get involved!

The focus of this year's event is Solidarity.

Tuesday, February 28, 2012

Follow Angel Steps on Twitter

Ok, so I said I would NEVER "tweet", but technically my recent decision to add Angel Steps to the Twitter world does not have ME tweeting, but Angel Steps tweeting, the difference is I am not trying to follow everyone and their mother, I am only interested in following those who are Angel Parents, are with support groups, are family members friends of Angel Babies.  If the previous criteria applies to you, please follow me on Twitter at https://twitter.com/#!/Myangelsteps

CHARGE Syndrome

What is CHARGE Syndrome you may ask as we did, blind-sided by the diagnosis the morning after Trey's birth.  Here is some information about the Syndrome from www.chargesyndrome.org. 

"CHARGE syndrome is a recognizable (genetic) pattern of birth defects which occurs in about one in every 9-10,000 births worldwide. It is an extremely complex syndrome, involving extensive medical and physical difficulties that differ from child to child. The vast majority of the time, there is no history of CHARGE syndrome or any other similar conditions in the family. Babies with CHARGE syndrome are often born with life-threatening birth defects, including complex heart defects and breathing problems. They spend many months in the hospital and undergo many surgeries and other treatments. Swallowing and breathing problems make life difficult even when they come home. Most have hearing loss, vision loss, and balance problems which delay their development and communication. All are likely to require medical and educational intervention for many years. Despite these seemingly insurmountable obstacles, children with CHARGE syndrome often far surpass their medical, physical, educational, and social expectations.
Continued research is needed to help us understand the medical and developmental challenges facing individuals with CHARGE. Better understanding will lead the way to interventions, therapies and educational strategies which can help people with CHARGE syndrome overcome many of the obstacles in their lives.
One of the hidden features of CHARGE syndrome is the determination and strong character these children display.


History of the name "CHARGE"

The name "CHARGE" was a clever way (in 1981) to refer to a newly recognized cluster of features seen in a number of children. Over the years, it has become clear that CHARGE is indeed a syndrome and at least one gene causing CHARGE syndrome has been discovered (see below). The letters in CHARGE stand for: Coloboma of the eye, Heart defects, Atresia of the choanae, Retardation of growth and/or development, Genital and/or urinary abnormalities, and Ear abnormalities and deafness. Those features are no longer used in making a diagnosis of CHARGE syndrome, but we're not changing the name.


Clinical Diagnostic Criteria (2005)

Even though a gene for CHARGE syndrome has been discovered, the gene test is very expensive and isn't perfect -only about 2/3 of people with CHARGE have a positive gene test. Therefore, the diagnosis of CHARGE syndrome is still clinical - based on the medical features seen in the child. An evaluation for possible CHARGE syndrome should be made by a medical geneticist who is familiar with CHARGE. The clinical diagnosis is made using a combination of Major and Minor features. Major features are characteristics that are quite common in CHARGE syndrome but relatively rare in other conditions, and are, for the most part, diagnosable in the newborn period. Minor features are characteristics which are also common in CHARGE, but not quite as helpful in distinguishing CHARGE from other syndromes. They either are common in other conditions (e.g. heart defects), harder to diagnose consistently (e.g. typical CHARGE face), or may not be diagnosed until later (e.g. growth deficiency). Finally, there are "Other" features - these may be very important in terms of health and management, but are not very helpful in determining if a child has CHARGE syndrome or something else."

FEATURE INCLUDES FREQUENCY
Coloboma of the eye Coloboma (sort of like a cleft) of the iris, retina, choroid, macula or disc (not the eyelid); microphthalmos (small eye) or anophthalmos (missing eye): CAUSES VISION LOSS
Pictures
80%-90%
Choanal atresia or stenosis The choanae are the passages that go from the back of the nose to the throat. They can be narrow (stenosis) or blocked (atresia). It can be unilateral (one-sided) or bilateral (both sides), bony or membranous.
Unilateral atresia or stenosis can be difficult to diagnose
Pictures
50%-60%
Cranial nerve abnormality I - Missing or decreased sense of smell 90-100%
IX/X - Swallowing difficulties, aspiration  - Pictures 70%-90%
VII - Facial palsy (one side or both)  -  Pictures 40%
CHARGE outer ear Short, wide ear with little or no lobe, "snipped off" helix (outer fold), prominent antihelix (inner fold) which is discontinuous with tragus, triangular concha, decreased cartilage (floppy), often stick out, usually asymmetric -  Pictures >50%
CHARGE     middle ear Malformed bones of the middle ear (ossicles): CAUSES CONDUCTIVE HEARING LOSS Common
CHARGE inner ear Malformed cochlea (Mondini defect); small or absent semicircular canals: CAUSE HEARING LOSS AND BALANCE PROBLEMS  -  Pictures
90%

I Am The Face Of CHARGE Syndrome


My Faces of Loss article was published last night.  If you are not familiar with Faces of Loss, Faces of Hope here is an exert explaining the creators' purpose: 

"There are hundreds of women bravely and openly sharing their stories of miscarriage, stillbirth, and infant loss on personal blogs, all over the world, and others who are looking for a way to share their stories with others. Faces of Loss, Faces of Hope is a place for us to come together and share our stories and our faces with others who may be looking for reassurance that they are not alone. My hope is that Faces of Loss, Faces of Hope becomes a place for new members of this “babyloss club” to come and read hundreds of other stories, and see hundreds of other faces like theirs, all in one place.

It is also my hope that Faces of Loss, Faces of Hope brings awareness to the issue of pregnancy/infant loss. I hope that by telling the world we are not afraid to show our faces and tell our stories, barriers will be broken down. Taboos will be broken, and lines of communication will be opened."

Please view, comment,  like, and/or share.  Although it pains me to be the Face of CHARGE Syndrome, I am proud to share my story and bring a face to this Syndrome and get the name out there for other mothers who are affected like myself and other mothers who have no idea what it is.  Click the link below to see my story and see The Face of CHARGE Syndrome of Faces of Loss, Faces of Hope.  Thank you for your support and love!  

http://facesofloss.com/2012/02/4752.html#more-4752

Friday, February 24, 2012

Need You Now (the parent parody)

By: Sharon Chatham 2/2012

The baby's wide awake and I'm pacing round the floor.
She's screaming bloody murder, I can't take it anymore.
And I wonder if I'm gonna lose my mind, I've gotten three hours sleep combined.

It's a quarter after 1, I'm a little tired I need sleep now.
Said I wouldn't yawn but it's not even dawn and I need sleep now.
And I don't know how I can do without, I just need sleep now!!!

Another shot of coffee, my nerves are racked to the core.
Wishing she'd sleep through the night like she did before.
And I wonder if I'm gonna lose my mind, I've gotten three hours sleep combined.

It's a quarter after 1, I'm a little tired I need sleep now.
Said I wouldn't yawn but it's not even dawn and I need sleep now.
And I don't know how I can do without, I just need sleep now!!!

Yes I'd rather sleep, then get no sleep at all...


It's a quarter after 1, I'm a little tired I need sleep now.
Said I wouldn't yawn but it's not even dawn and I need sleep now.
And I don't know how I can do without, I just need sleep now!!!

Oh baby I need sleep now.



Thursday, February 23, 2012

For Angel Parents Looking For Their Rainbow...

 Lorelei enjoys me singing Disney songs to her and I sang this one from to her and it made me think of all of the Angel Parents yearning for Rainbow Babies or just a little more happiness to replace the grief.  It also makes me think of my own desire before Lorelei and even now, as I hope to have a third child. 

 A Dream is a Wish Your Heart Makes  from Cinderella
A dream is a wish your heart makes
When you're fast asleep
In dreams you lose your heartaches
Whatever you wish for, you keep
Have faith in your dreams and someday
Your rainbow will come smiling thru
No matter how your heart is grieving
If you keep on believing
the dream that you wish will come true

Saturday, February 18, 2012

From Trey...

This poem reminds me that it took 2 years for me to realize that God didn't kill my baby, nature did, 


God saved my baby from a life of pain.  I hope one day not to hurt so much about losing Trey, but 


until I will hold him close to my heart and ask him for peace in my heart.  I believe HE is the only one 


who can guide me to peace.




"Why did you take my child, Lord?

I cannot understand!


No longer can I touch his face


Or hold his tiny hand."


he said "Mommy, I'm an angel now,


My spirit will be free;


I'm an angel now in heaven,


So please don't cry for me."

It Must Be Difficult



‎"It must be very difficult

To be a man in grief,

Since "men don't cry"

and "men are strong".

No tears can bring relief.

It must be very difficult

To stand up to the test

And field the calls and visitors

So she can get some rest.

They always ask if she's all right

And what she's going through.

But seldom take his hand and ask,

"My friend, but how are you?"

He hears her crying in the night

And thinks his heart will break.

He dries her tears and comforts her,

But "stays strong" for her sake .

It must be very difficult

To start each day a new .

And try to be so very brave-

He lost his baby too."



- Author Unknown (but appreciated)

Friday, February 17, 2012

I Will Not Say Good-Bye


I Will Not Say Good-Bye
By: Danny Gokey

Sometimes the road just ends
It changes everything you've been
And all that's left to be
Is empty, broken, lonely, hopin'
I'm supposed to be strong
I'm supposed to find a way to carry on

I don't wanna feel better
I don't wanna not remember
I will always see your face
In the shadows of this haunted place
I will laugh
I will cry
Shake my fist at the sky
But I will not say goodbye

They keep saying time will heal
But the pain just gets more real
The sun comes up each day
Finds me waiting, fading, hating, praying
If I can keep on holding on
Maybe I can keep my heart from knowing that you're gone

I don't wanna feel better
I don't wanna not remember
I will always see your face
In the shadows of this haunted place
I will laugh
I will cry
Shake my fist at the sky
But I will not say goodbye

I will curse
I will pray
I'll relive everyday
I will shoulder the blame
I'll shout out your name

I will laugh
I will cry
Shake my fist at the sky
But I will not say
Will not say goodbye
Will not say goodbye
Will not say 
ooooohhhhh

Thursday, February 16, 2012

End of Discussion


Dear You (You know who you are):

For 12 years I have watched you erratically come in and out of my life in flights of rage and depression.  I have listened to your insensitive words about my weight, my hair, my decorative choices, my lack of southern heritage, taking your son away from you, my wedding plan choices, my lack of culinary skills, and coming to my house and "Baby Love" after Trey died all day.  I watched as my words and experiences, seemingly bonding moments, were thrown in my face and led to judgment and shared with my parents.   I listened to my mom cry at your ugly words written in a letter to her, words I told you in confidence that were never meant for her ears, ESPECIALLY by you.  They were MY words to say and I didn't ever want her to hear them.

In horror, I watched how you manhandled my son in the NICU insisting that his tubes be moved for your comfort and squeezing his four pound body with blatant disrespect for his condition, not to mention I let you be the first person to hold him besides his my husband and I as an olive branch in our relationship.  I waited with my husband in the hospital for your arrival, the very place we didn't want to be when our son died and you never showed, not even a call to tell us you couldn't come.  You performed another no show at Trey's Memorial, claiming I never told you about it when I planned it around YOU.  I told you that it would be the last Sunday in April, if you had ANY question, all you had to do was look at a calendar or call the three cell numbers you have for the boys and myself.   My hubby needed you BOTH of those days and you chose not to be there for him.

Once again, I heard of your ugly words after his death and your accusations of my health choices while I was pregnant with him.  You made assumptions based on what you heard someone else say, and instead of coming to us us, you wrote a nasty email to my parents regarding our lifestyle and hid it from my husband when he explained that the accusations you heard were not true.

I held my husband as he cried at the ugly words you spewed at him, things no one should EVER hear from someone like you and then ignore his birthday while contacting his brother on his.

I read texts from you and heard constantly how my husband spent EVERY holiday with me which is NOT true, I was alone for Trey's first Christmas and just about every other Christmas.  Plans are hardly ever made in advance so the boys come up with their own plans, even though you say the plan is the same every year, they don't seem to know the plan.  The last time about plans during the holidays were texted to me, you cursed at me and said you never wanted to be contacted by me ever again.    Months later, when we found out Lorelei was a girl, I texted you because I thought you deserved to know.  When she was born and you didn't think it was important to come meet her in the hospital, I sent a picture to you out of consideration featuring my husband holding her, thinking maybe it would soften your heart.

5 weeks later you STILL had not met our daughter so I texted you and invited you to meet her, invited you back into our lives, the very lives that you had such disdain for.  Inviting you back into our lives was not an easy decision or process, but it was necessary for Lorelei, how could I live with myself as a mother not making the effort? My husband was pissed at me but quickly had a change of heart when he saw how sweet LL and you were together, he thanked me after every visit for letting you back in and treating you with such hospitality.

Through out these sporadic periods of tension between us, you have done many wonderful things, though they are overshadowed by the hurt you have caused my family, my husband, and myself.  You have helped provide for our daughter, helped us around the house after Trey died, visited us while Trey was at the children's hospital, you've cooked wonderful meals for us, welcomed us into your home, and spent quality time with us.

I too have done MANY MANY MANY things to foster at least a peaceful relationship between you and I, including extending olive branches when you CERTAINLY did not deserve them, giving you chance after chance to redeem yourself,  taking care of you in the hospital after your accident, purchasing special sentimental gifts for holidays, taking EVERY precaution to be civil, if not polite to you, brushed off things you said and did that boiled my blood, helping you recover from your back injury, loaning you my dog for company, welcoming you into my home, keping you updated on Lorelei's progress and milestones, providing pictures of both children, and most of all, I have bending over backwards to be respectful to you even though you have never earned my respect. 

I spent YEARS trying to get you to love me, then settled for trying to get your to like me.  After that, I just tried to respect me and my position in my husband's life.  Finally I just resolved to hope that one day your would respect me, now I know that I will never be good enough in your eyes and I don't feel like trying anymore. 

You have NEVER respected me as John's partner in life or as the mother of his children.  You come into EVERY situation like you're in charge, no matter who you trample over.  Our volatile relationship has affected my marriage, driving a wedge between my husband and I.  And, even though he won't stand up for me and say that it is not right for you to treat me this way, I still honor your relationship with him and try to be civil if only for make him happy, sacrificing pieces of myself along the way, breaking me down slowly and painfully.

I have been guilty of blowing up at you when I am past my boiling point, THAT I will own.  I have also vented about my trials with you, mainly to find out if I am doing the right thing by you.  Many people in my life think that I have extended WAY too much in regards to you, but they understand that I do this because it is important to my husband and for our daughter. 

My husband cannot come up with ANYTHING I have done in rudeness, he can only recall all of the ways that I have reached out to you.  I begged him to tell my offenses toward you so that I could make it right, and he said that he would DEFINITELY confront me if I was offensive in any way, I wish he would stand up to you in my defense the same way.

That brings us to the present, we are once again in dire straights after only a few months of interaction if ONLY because of our daughter.  You have waltzed back into our lives and once again tried to dominate over me in my relationship with my daughter AND husband.

You have taken liberties and not considered my protection of my daughter such as wanting to wait a year to give her dairy products.  I had a milk allergy when I was a baby, who knows if I passed it on to her, even if I didn't, pediatricians TODAY recommend waiting a year.  There is NOTHING wrong with the precaution we are taking with Lorelei, ti might sound silly to you, but I would rather be silly about something then end up with a child with a bad reaction.  You change her diapers on our furniture without any protection despite my indication that we have a changing table you can use.  In YOUR house you can change her where ever you want, but in our house, we don't have time for the extra hassle to clean our couch if she has an accident, not to mention not protecting our furniture presents a health hazard.  You question my worry that my child is cold when you take her outside on blustery days.  You took it upon yourself to try to spike our child's hair for her Baptism just because Lilly did it to your kids, that is NOT your place. Parenting is NOT the same as it was when you were raising your children yet I get constantly reminded of how you did things as a parent.

T here are more offenses, most of which I turn a blind eye to as they are not worth broaching, as I have to pick my battles to keep in an attempt to keep the peace.  I try to be as dignified as possible in stating my wishes yet you get offended at MOST attempts, not realizing that though we are very much alike in personality,  I am different than you.  I do things different, I think differently,  and I see life differently than you do.  I try to pass off the things that bother me about you as part of your charm, part of what makes you YOU.  Most of the time my differences offend you, which leads me to thinking you don't have respect for my differences.  You are frequently arguing with me about my decisions in life such as when you asked me when I was going to stop getting degrees and start raising your grand kids, not acknowledging that education is important to me, that unlike you, I don't want to be a stay at home mom.  I want my children to have the example of TWO educated parents in careers that fulfill their happiness.  

Through all of this, you have wanted me to sugar coat my requests and have a discussion with you about my concerns regarding my daughter, stating I am rude and controlling.  I seems that you see your lack of control in situations is equivalent to disrespect from me to you.   You interpret my directness as hurting your feelings when you have had NO problem speaking the same way to me all of these years.  Well, I have knew for you....

You are NOT in control of me, my marriage, or my parenting, END of discussion.

I am not going to sugar coat ANYTHING in my regards to our daughter, END of discussion!!!!

I do NOT owe you an explanation when my actions and words protect my daughter, END of discussion!!!

She is NOT your child, END of discussion!!!

You are NOT her parent, END of discussion!!!

I am NOT here to do you bidding, END of discussion!!!

Our daughter's health and well being trump your feelings being hurt, END of discussion!!!

I have EARNED the right to be a control freak in regards to my daughter's life and I own and take responsibility for this trait as a mother, END of the discussion!!!

In OUR home, OUR wishes are paramount, ANY other guests are respectful of how we run our home, END of discussion!!!!

I don't have to have this discussion or disagreement with ANYONE else but you, that should tell you something, END of discussion!!!


Finally, in regards to our daughter's care, there will be no discussion, END of discussion!!!

Wednesday, February 15, 2012

The D Word

Yesterday I was sharing my story on www.facesofloss.com where parents share their stories of losing their child and share resources and blogs.  Under each parent's picture above the story they submitted, they are labeled "Face of___________", the blank could be filled in NICU death like me, or SIDS, miscarriage,etc.  Each person can choose the wording of their picture's caption and some chose the terms NICU "death" or Neonatal "death".  I KNOW they ARE actually deaths and their babies died, but those "D Words" always seem so rigid and cold.

Soon after we lost Trey, (notice I didn't say "Trey died") I had to get out into the world to go to various doctor's appointments and such.  People who knew me would ask about the baby and I would lower my head and say "he's dead" or "he died" with slight annoyance and a whole lot of crassness.  I then would offer no more conversation, leaving them stunned and aghast.   People were only asking because they knew I was pregnant and no one expects to hear that someone's baby went to Heaven (notice I did not say "the death of a baby").  The wounds of grief were so fresh and wide open that I wasn't quite prepared to be forthcoming to every Tom, Dick, and Harry about my loss (notice I did not say "my baby dying") and I DEFINITELY was not prepared for their horrified yet embarrassed reaction when they learned of Trey going to Heaven. Their immediate sympathy put an anvil of emotional weight on my already heavily burdened shoulders and heart.

The doctor's I saw regarding fertility and Trey's CHARGE and fight for life called his passing an "event", like it was the Super Bowl or something.  When I had my six week check-up, the nurse asked me if I was breast or bottle feeding, once again the d word came up but only because I was INCREDIBLY annoyed that this staff had NO knowledge of our loss and the doctors in charge of my care during my pregnancy had obviously not informed the staff  leading to this nurse's question.  When I went back into the room after giving a urine sample, my medical file was wide open on the counter with a read piece of paper on top of it that read "BABY DEMISE".  I wanted to scream and throw the folder across the room.  The OBGYN office that I went to for my pregnancy with Lorelei had entered the terms "Poor Obstetrics" which I eventually had to ask what it meant and why is it written in my record if not every doctor is going to take note of it, leading to the uncomfortable questions followed by the same horrified/embarrassed reaction that I have become accustomed to.

I guess almost three years later, with a little healing under my belt, I am no longer annoyed when someone asks me questions regarding Trey, my icy responses have softened and I use terms like "passed away", "gone to Heaven", "we lost Trey" or "became an Angel".  I rarely use the "d words" to describe my son's fate, I might use them in reference to losing a child in general.  When I am communicating with other Angel Mommies, I RARELY use the dreaded "d words".

I started using these more gentle terms as to soften the blow of my listener and when they say "I am so sorry", I respond, "It's ok, it's our reality, he's our Guardian Angel".  They might leave the conversation embarrassed and engulfed in sympathy, but at least I put up a strong front and made an attempt at making them feel better about accidentally and unknowingly putting their proverbial foot in their mouth.   These terms also comfort me as the "d words" have a cold connotation for me, although they flow freely in moments of extreme emotionality, I am sure because I need to hear their harshness to let grief flow through me more freely.  Of course sometimes in these fits of emotions, I find myself angry amongst my tears and those words represent all that is cold and bitter about grieving.

I wish there were a better way to say neonatal "death" or NICU "death", but until that day, we'll have to come to terms with the terms I call the "d words" just like we have become to terms with our grief daily.  

I'm a New Member of BlogHer



I just added my blog to BlogHer.com which is a 

site for women to share their blogs.  Click the link
 
below to check out my profile! 

Saturday, February 11, 2012

Angel Steps is going GLOBAL!



I am SUPER excited to share that the Angel Steps blog will be moving to a new domain name.  The new domain name is www.angelsteps.net.  I look forward to the transition to the new site, maybe a new look, new features, more resources, and ultimately more exposure and help for grieving parents world-wide.  I have my work cut out for me but I am ready to dive in!!!  Be looking for an Angel Steps logo as well!  Thank you to all of my followers, readers, friends, and family for your love and support of this site, my heart and soul, my tribute to our son and Angel Babies and Parents everywhere!

Do not judge...

The image of this grieving mother was constructed out of white marble to commemorate the  victims of Tajikistan’s 1949 Khait (Hoyit) earthquake and landslide (20km long and 1km wide). As many as 28,000 people may have died and the bodies that could be recovered are in a mass grave behind the statue.
Now, this is no 1,500 year old Buddha, but it was by Soviet standards a beautiful and meaningful monument. And the locals likely had a lot of emotions tied into this memorial.
Unfortunately, this monument was located in the Karategin (Rasht) valley, next to the Yarhich River between Jirgitol and Gharm where field commanders of the Islamic Rebirth Party held territory during the Tajik Civil War. Unfortunately, the Grieving Mother of Hoyit was “unIslamic” and had to go. So they destroyed it. I thought at first that the Islamic Movement of Uzbekistan may have had a hand in this, but I can’t quite match the timelines with the available info. I’ll ask when I go there (and get an “honest” answer, I’m sure).
For more info you will need to google “Скорбящая мать Хаита,” (lit. “Bereaved Mother of Khait”) as most of the writing is in Russian.


Do not judge the bereaved mother.

She comes in many forms. 


She is breathing, but she is dying.

She may look young, but inside she has become ancient.

She smiles, but her heart sobs.

She walks, she talks, she cooks, she cleans, she works, she IS, but 


she IS NOT, all at once. 


She is here, but part of her is elsewhere for eternity..

♥ Jodes

Thursday, February 9, 2012

When You Lose a Baby

Courtesy of: Small Bird Studios

You don’t know what to expect.

People surround you. For a couple of weeks. Making sure you are not going to kill yourself, refuse to get out of bed, or start rocking a baby doll like the crazy lady they heard about from a friend.
You get lots of sympathy cards, clearly written and designed to be sent to console a daughter losing her father. Not the other way around.
You get free baby formula in the mail. For months and months and months.
And free baby magazines. And free baby coupons.
You secretly envy every pregnant woman. But not without a tinge of guilt, because you know all too well that she might be one in four- expecting her rainbow child.
It seems like the whole world is expecting a baby.
You have baby stuff around your home. Because you never imagined you wouldn’t need it.
You feel jarred. In the grocery store. At a birthday party. At the dinner table. At Christmas. Driving.
The baby you never knew, but lost changes every part of your life. Every. single. part.
Forever.
You see baby clothes and it brings tears to your eyes.
You get sick and tired of crying. You never knew it was possible to cry this much.
You find yourself angry at God. Angry at yourself. Just angry.
You sware you can feel them kick but they’re gone. They call them phantom kicks. I call them painful, all kinds of painful. But sweet too.
You know, or you have a strong feeling of knowing what your child would have looked like, and been like. You see a child in the store, or on the street. Their hair color, dimples, smile, their personality and suddenly you are reminded of your child. You miss your child even more, if that’s even possible.
Your Babies R’ Us Registry is still active. There is no delete button on their site. The babies r’ us people don’t make a dime on people like us. Why bother right? You have to call them, plead with them to remove your freaking’ registry, because there will be no baby shower. There is an awkward silence. There is sadness. There will be no baby.
You get hospital bills about 3-4 months after you buried your child. You have to pay for the baby you delivered but didn’t bring home.
You find that moment of happiness in life for the first time, but the guilt swallows it up almost immediately.
You remember the size of the casket. The size of the plot. The face of the funeral director. The expression of those that attended the funeral. The feeling of raw pain, like your chest has literally been ripped open.
Somehow you convince yourself that you deserve happiness. Because you really do. But in the happiest, purest moment, there is still that hole that only they were meant to fill.
People compare your pain to their own pain. The loss of their grandmother, husband, their failed marriage, rebellious teenagers. Somehow this comparing leaves you stranded. If they can compare their pain of a situation to the loss of your BABY, they will likely never get it. Babies are not supposed to die. End of story.
You lost a dream. And it almost feels like you imagined their entire existence up. Their name becomes a distant memory on the lips of others.
There is awkwardness when you talk about your child in a crowd. No one knows whether to cry, walk away or pretend you never brought him or her up.
You lose friends. You find new ones.
You can’t believe that women have actually survived this and you never knew about it. Not really, anyway.
You would do anything for another minute with your child.
You cry when others bring up your child, not so much because it hurts but more so because it such a precious and rare gift.
You long for the rewind button, even after many many instances of acceptance.
You want to know what went wrong, and why…
You find a new appreciation for moments in life that make you laugh… you laugh harder and love stronger.
You know that you can die bitter, or die thankful. There is no in between.
You never ever, EVER get over your child. The one you hoped for, prayed for, carried and loved for the weeks and months they were with you.
You learn to live with the pain.
You are better for having known them at all.

Sunday, February 5, 2012

Tribute to Trey

This is the tattoo Trey's Godfather got in honor of his Godson, three stars, just like me!

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