Puzzel Pieces....

Dear Chloe,
My mind is like a puzzel today sweet girl. I dont really know where to start other than you again are on my mind. After 4 days of trying to sread your message I wonder how far it will get. It is so simple now, to share information by a simple click of a button. It is almost like I am getting spit at, right in my face. So after everything we have gone through, everything this family had to endure as well as losing you in the end. If some body, a doctor, anybody really would have just said- "wash your hands". Wow, I feel like a jack ass.
I am hitting that "share" button so much I dont know what to do with myself. How simple, how easy, how f-ing unbelievable that I had never heard of this virus. I realize after hours upon countless hours of research that this work is never ending. I intend to change some things though. There should and eventually there will be standardized screening for this virus. There are a myraid of other blood tests that are done during the early stages of pregnancy, why not? True there curretnly is no vaccine, but knowledge is power- the power of prevention, the power of planning, and the power of making sure there is time for something to be done.  If only I had known months before Chloe, your story might have turned out differently. The medicine we tried and the different methods of trying them eventually did make a difference. It was just to late to make a difference for your life.
June is upon us baby girl, and that makes it CMV awareness month. Funny but before you I would never have known that. Not anymore my love- and if I have anything to say about it, everyone else within ear shot of me will know it too.
My sweet Chloe I love you, I miss you; until I hold you again......

Mommy

Another Day

Its another day Chloe, not good not bad- just another day.
I am on the verge of complete exhaustion, the weird thing is I am not exactly sure how. Besides the usual sleep deprivation, its another day in my "norm".  Your facebook page was launched a couple of days ago. I am happy so far, we have 40 *likes* :0).  There are so many ideas running through my mind I just hope there are those who are willing to help, to give up their free time to a cause not of their own. For right now I know I must be patient, good things will come when the time is ready.  I just feel there is so much good to do in your name; plus patience has never been my virtue. 
Your brother is behind me making car sounds, he is funny. I imagined when I found out I was pregnant with you how you would both be sitting in the bathtub together playing. I would of course be taking the usual adorable naked baby photos of you two together. So many plans Chloe, camping, fishing, snowboarding, traveling. All those things play over and over in my mind like they are real, but they will never happen. I will never hear you call for me.. reach out to hug me..nor will I be there to coddle you when you fall off your bike and scrape your knee.  So many things I should be doing as your mother- I do not think its fair.
I am content in some things sweet girl, don't get me wrong. I have to find the blessings in this life. Ayden keeps me busy and your Nicolas, Alina, and Bella are growing into beautiful children. They adore you and they have never laid eyes on you, only your pictures. That's how pure and unconditional the love we hold as a family together. Well my love, I will pray for you, our mission and in turn I hope we make a difference. We have to- life is too short, too precious to not at least try. Its sad to think that if you hadn't died, would I still feel this passionate and selfless?  I don't think so, but I guess that's just another way you bring out the best in me, especially during the worst of times.
Sweet Chloe, I love you, I miss you; until I hold you again........

Mommy

Memorial Day

Dear Chloe,
Today is Memorial Day and as your daddy and prepare to have the family over and remember those who have served I cant help but think of you. In your own way you were like a little soldier, fighting for your life, at the mercy of fate, but you were unarmed. I took a long run today and I just couldnt get you out of my mind, I do that allot. Running usually helps me clear my head, to get focused and find some clarity in all the confusion, but today; all I could think about was what it would be like to have you here.
It has been a hard weekend for your daddy and me. Your brother and sisters left the day before yesterday to spend the summer in Las Vegas. Its ironic because the time leading up to getting them on the plane is spent thinking that the break will be nice, what a fun summer they will have and how it is time we can focus on your big brother Ayden. So the day comes and we meet it with anxiety, frustration, loneliness, and anger. We miss them.  The house is too quiet, so quiet that there are eerie sounds the house makes that I never noticed before. The first couple of nights I cant really sleep much, but I havent really had a good nights sleep since you left me. Mommy has been good though, I have gone 4 nights in a row without some sort of sleeping aid. How sad is that Chloe? Mommy measures how good her days are by the amount of sedatives she takes. It is strange to me how my life has taken this different turn. Some days its good, some its bad and other days it is really bad. Luckily your brothers and sisters are here to snap me out of it-by "it" I mean this "funk" that has surrounded me like a dark cloud. I feel uncomfortable in crowds, around strangers and I even feel uncomfortable around those we have known for quite some time. I cant explain it Chloe, I feel alone- like I am on this journey alone and no one else could possibly understand. I know it is not true, but I cant help but think this way about you, us, what could have been.
Well my little soldier, I will have to make this one short.  Sweet Chloe, I love you, I miss you. Until I hold you again.......

The Beginning....

Dear Chloe,

This is the 3^rd time mommy has tried to write something down on this paper. It has taken a week to at least subside the pain I feel from no hearing you cry from your nursery. I wanted to tell you the world about you, well about “us” really. It’s something I feel like I should shout out to the world because it is unfortunate that the world will not be able to see you grow up; that mommy and daddy won’t be able to see you grow up. No funny Christmas cards with your cheesy mug on them or silly bathtub pictures that would have mysteriously showed up on the projection screen at your high school graduation.  I owe you this much, that the world may imagine you growing through me, my dreams of what should have been. I vow that the world will know who you ARE.

I’m angry Chloe, I’m angry at the world. I feel as if you were taken from me. This was not the plan; I don’t believe this is part of any mother’s plan….definitely not in my plan anyway. There is a part of me that believes I was cheated out of my mother hood with you. Stripped of the right to care for you, raise you and nurture you. I distinctly remember the day I found out about you; Sept 20^th … the day I turned 29. Tears ensued, but the look on your daddy’s face was priceless, he was truly happy. I will admit I was scared. I know that feeling is pretty typical, but I was scared about failing. Not only failing you, but also failing your brothers and sisters. This journey has been so hard on them. Between the abuse they suffered in their mother’s home, moving, court battles, and losing you; I pray every day hoping that I at least I did not fail them. The pain of feeling like I failed you is unbearable.

The look on their faces when we found out you were sick is burned in my memory. It wasn’t supposed to happen that way. They were supposed to be in school, your brother Ayden was a day care. But as fate would have it that happened to be the year’s one snow day, so there we all were stacked into a tiny ultrasound exam room. They were fascinated with you as they watched you move on the monitor. As the woman of the house I know I should have been strong. Nobody likes to hear “I’m sorry Mrs. Perry, but…” from a doctor. All 3 sets of concerned eyes pierced at me waiting for that motherly reassurance that everything was going to be ok. Instead what they saw was a broken mother curled up in a ball sobbing on the exam table. I couldn’t keep it together, I feel as if I failed them there.

Looking back at the myriad of emotions over those 8 months and now the past year, I don’t know how I am making it through the day. If your brothers and sisters were not in my life for some reason, then I honestly cannot say where I would be. I wouldn’t ever “off” myself, but I don’t think I would be functioning on any kind of level. Ok, here it comes, the water works again. I used to never cry or if I did there is not a single soul other than your daddy and my family that try to argue this. With you though, I can’t hide it, I can’t; that’s what you do to me little girl. It’s impossible to even try, you are everywhere. You’re the sweet baby girl in the store on her first shopping trip just days after being born, you’re the whiny 2 year old throwing a tantrum at the toy store because mommy said she won’t buy you’re a toy (for the record I would buy you anything). Your that 9 month old blue eyed angel while I’m waiting in line, I kindly ask the mother what her name is and with a smile beaming with pride she says “Chloe”. (true story) See baby angel, how could I not break down? Who could just act like everything is f@#$ing normal? (mommy will try to watch her F-bombs).

It’s hard to not have this feeling in the pit of my stomach like it is my fault or that I could have done something different. It’s hard to keep the rage under control when a doctor tells me that the virus we had is common, so common that 80% of the population will have it by age 40. So common that it is contracted through urine and bodily fluids.  If I had been made aware of this “common” virus, I could have even prevented it by simply wearing gloves while changing your brother’s diaper, washing my hands 20 million times more than I already do. That I could have done something to stop this before it ever started. “Oh, but we don’t screen pregnant women for it because there is no vaccine! Sure, yeah I get it, you don’t screen for it. But why the f@ck was it never even mentioned! If it is so common, why is it that after 5 children, my husband had never heard of it? Riddle me that, Dr. “Im Sorry”. But what do I know? I’m just another who lost their child to CMV, another mother who had to bury their child.

I’m sorry Chloe; mommy is trying to keep it under control for you. You really couldn’t possibly imagine the impact you have left on my soul. I still walk through the baby girl section at stores. There are so many cute clothes you would have looked so precious in. I believe pink would have been your signature color, but mommy would have thrown a little purple and blue in there because there is no doubt in my mind that as my daughter, you would have been a tomboy. No silly fluffy, lacey dresses for you. No ma’am, my baby girl will have the pink fishing pole with carhart bibs and shit kickers on her feet.  ;0)

I tried to be strong for you. I tried so hard. At times I think I was too strong, maybe numb from all my senses. When we watched your heartbeat fade away on the monitor, it was just like I was in a movie. Like it was some jack ass ER tv show. So surreal, George Clooney wasn’t going to save the dy ad you weren’t going to magically wake up and then we walk happily out of the hospital on an hour after the show started. Your sweet daddy couldn't watch it, what an amazing daddy he is baby girl. But me, I don’t know what was wrong with me; I couldn’t take my eyes off of it. Even after you were gone, I stared at the flat line for what seemed like hours, but it must have only been minutes after the doctor had to snap me back into reality. 

That's when it hit hard, knowing that you were on the way, but that I would never hear your cry, coo or a sigh from that sweet tiny little mouth of yours. The very place inside of my body that was supposed to bring you life, to birth you into this world turned into your tomb, your coffin in a matter of seconds. What a ass backwards universe Chloe. I hated my universe at that point. Your daddy had all the hope in the world, he believed to his very core that you would pull through, that the damage could be reversed, that the months of treatments, ultrasounds, infusions, and pills would make this nightmare stop. Oh how I was envious I was of his hope. But I think you and I had a connection, we both knew, I felt you.

We talked a about it every night, you and me. I know I told you it would be ok, and mommy really didn’t lie. You are ok now, safe unharmed by the virus. But it was just not how I planned it. In the end after months, days, hours of IV's, experimental drugs, and pills the size of my thumb it wasn’t meant to be. Even then your father tried to combat the negative with hope. Your final ultrasound revealed that all the meds had done their job, the virus had stopped progressing, but it had done so much damage that there was no recovery. Nothing could repair or reverse the many problems that horrible virus inflicted on you. You were called "incompatible with life", those words left me incapacitated; like my life had been sucked out of me. It was almost like you were being referred to as a accident, like an abortion waiting to happen. I wanted to scream at all of them, tell them- "She has a name! Call her Chloe!" You were not just any baby, not just any pregnancy, you are my daughter. On paper you were just another statistic, another child that would not survive the labor, or live outside of the womb. Thank you for that kicks in the nuts fate.

I will never forget the day you were born. January 25, 2012, only 4 months ago, but yet it seems like a lifetime since I have touched your face or held your tiny finger in mine. This would be the best and worst day of my life. Life and death happened without a single breathe that day…you were not given a chance for that breathe. I will probably be angry about that for the rest of my life. I know your father is, it tears him apart. I wish there was more I could do.  When you were born, I held you first (an understanding with your daddy and me since I did all the work ;0) He selflessly agrees). You just laid there, lifeless- the hospital room was silent. The labor was hard yet easy at the same time. I had easy labor with your big brother too, but this killed me at the same time. I exceeded all the staffs' expectations of when you were to be born. I credit that to our gym time together. You loved to work out and too. You enjoyed running, your brother Ayden enjoyed lap swimming.

You were taken from me promptly, the family got to hold you- it was a full house, everyone except for your big brothers and sisters. I wanted the memory of you to be a peaceful memory, not stricken with heartache and sadness.  I wish I could have held you more. The virus did a pretty bad number on me too baby girl. Mommy drifted in and out of consciousness, I guess my fever spiked to 104. I vaguely remember waking up with ice packs surrounding my body. What I do remember is waking up frantically searching for you. Your grandma Chris would rush over and assure me that you were in her arms or with the nurse getting you hand and feet molds. By the time I came to, I screamed for you more. I was awoken by the chilling scream of another poor mother, a little boy she had; born sleeping. She was two doors down from us Chloe. In a fog, I kept trying to listen for your cry, but all I heard was silence- dead silence. Finally placed in my arms I felt that sudden rush of comfort as a mom holding her child and in the moment it came it left just as quickly. Reality again hit me; my newborn baby is ice cold. Oh yeah, that’s because she is dead. Some mother you are, get your head out of your ass.

For the 15 hours we had you- never were you not in either my arms, your daddy's arms or your grandmother's arms. When I could finally move around, the first place I took you was to the rocking chair by the window. I sang to you as if you could hear me, I stroked your cheeks and held your hands, so perfect. Your daddy and I took turns sleeping with you in our arms. At one point your daddy curled up next to me in the hospital bed and we cuddled with you.  In the morning a photographer came and took photos of you and us holding you. You are all over the house Chloe. You hang proudly in all four corners of the house. I glance over at you and I wish I could smile, but it's hard. My arms long to hold you still; that is my job as your mother. The pictures were of course bittersweet. I can only look so "soft and sensitive" when all I can think about is how can this be happening to me?

We finished our time with you telling you stories about your siblings. We laughed- you would have loved them probably more than they love you. That last hour was so special. When the funeral home came to pick you up, I could barely control my anger. Two men dressed in suits came and offered to carry you out in a carrier for privacy. I agreed, sounded like the right thing to do. I was ok until one of the men brought what appeared to be a gym bay with a blanket inside. Ok, I can wrap her in it. But the bag is so damn cold! Is this another sick joke from the universe? How will she stay warm?  What if she gets sick? What about a car seat? Who will hold her? What a horrible mother I am!! Wait! It doesn’t matter, I'm sorry for my cold stand-offish attitude towards you and my cold shoulder after you have told me the ten-thousandth "I'm sorry for your loss". My child is dead, thank you for coming.

Hugs and kisses went around the room. Your Auntie Samie came back to help 'gussy' me up for our pictures with you as well as say goodbye to you. I was the first and the last to hold you as I tried to muster the strength to place you in that bag. You looked so tiny in it, so sweet as if you were just sleeping. In my last ditch attempt to try to be a mother to you, I swaddled you in that ice cold blanket and watched as you were zipped up like a pair of shoes and two men carried you out of that room, around the corner and away from my arms. To this day I still hate those men. I hate that moment, I hate everything I didn’t say, and everything I should have done. Sometimes I just hate me…. It's very confusing Chloe. I know my thoughts are irrational, but you are my child, my dead child. I think I have earned my insanity.

So this was a glimpse baby girl of what is brewing in my head. It can be a scary place, but it is balanced our by my love for you and your brothers and sisters. There is so much more I could say- I have imagined and created in my mind memories of our life with you. I will get there baby, second by second, hour by hour, day by day. As long as I have you as my driving force I will make a change for you and for others Chloe. I will do whatever it takes because this is how I feel closer to you. We can make a difference baby girl, we have to.

I will forever wonder, ponder, and beat myself up over why you are not in my arms as you should be. I hate it! I have come to the realization that I will have to live in this life without you; I realize it is because you were just too pure for this earth. Sweet Chloe, I love you, I miss you. Until I hold you again…..