Pulse Ox and more......

If you are following my blog and we are strangers or even distant friends, you will hear me mention things like Pulse Ox and in the future you will hear me mention CHF. I am Oklahoma's advocate for starting the law to require all Oklahoma newborns to be checked with a pulse ox machine before being discharged from the hospital as part of the newborn screening process. You can follow Oklahoma's movements by joining our Facebook page if you have a Facebook account. Find us at https://www.facebook.com/oklahomapulseox. Each state has their own page. You can also learn more here at http://pulseoxadvocacy.com/ as well as find who is taking the initiative in your state.

CHF (Children's Heart Foundation) will come in the future. I have plans to one day start Oklahoma's chapter and if someone else starts it first, then I will at least be a part of it. You can find more information on them at https://www.facebook.com/pages/The-Childrens-Heart-Foundation-Official/127589997307069 or at http://www.childrensheartfoundation.org/

For information's sake, I leave you with this....."Most people are unaware that Congenital Heart Defects (CHDs) are the most common birth defect in America, affecting approximately one in one hundred, or 40,000 newborns each year. CHDs are responsible for one third of all birth defect-related deaths and sadly 20 percent of children who make it through birth will not survive past their first birthday. Although a child is born every 15 minutes with a CHD, research continues to be grossly under-funded in America. Of every dollar the government spends on medical funding, only a fraction of a penny is directed toward congenital heart defect research." (Children's Heart Foundation)

Candy-Coated Misery

It is the middle of the day, the kids are at school and I should be sleeping.....packing!! I meant packing. I am just oh so tired these last 2 days that all I can think about is sleep. I want to write but I can't ever just write. I am strange like that. I have to write when it hits me. Usually it hits me in the middle of the night but I am much to tired and lazy to get up and write. It is too bad though. It would be some really great stuff....and then it's gone by morning. I would like to think that I can use my free time now that the kids are back in school to write...but if I don't have my feeling then I just sit and stare at a blank screen struggling with writers block. Carissa tells me to keep a little journal with me so I can get it out when it hits. She must forget that I am OCD about my handwriting and it would take me an hour to write the first sentence!

So anyways, last night I started through Chloe's books. I started with the funeral book first. I read through the cards that came with the flowers, the cards that were mailed, the hand-written letters, the newspaper clips and the signatures of people that came to the funeral. I was actually quite surprised at the signatures I found there. I am sorry to admit that I can't remember who came and who didn't. I knew both mine and Jason's families were there, but beyond that......I just can't remember. I can't really remember a lot. The first 2 years after she died are blurry. It is sad. People ask me why I chose the funeral home, or cemetery, or what-not that I did. Hmmmm. Good question. I don't know. I really don't. I remember when she died they asked me all sorts of questions. I'll save that for another post. Back to the books. I started with the one from her services and then moved on to her baby book. I picked it up and read the cover. It reads "Welcome Baby" and under that, "Your first five years". In true Shannon style I read that and then quickly sneered, "or your first six months. You know, whichever." I think my ability to be quick with sarcasm has kept me protected for many years. The book actually made me angry. Very very little of it is filled out. There are some ultrasound pictures in there. Many actually. I had 4 ultrasounds! The one that bothered me the most was the picture they took of her heart. I actually am holding in my hand a picture of her heart in utero??! Seriously? Chloe only had the shell of a heart. How could they, the radiologists and crew, knowing what they are supposed to be looking at, miss the fact that she didn't have 4 chambers or anything that even resembled a normal heart?! So being as I was already getting myself worked up, instead of stopping I pushed through and picked up the calendar where I jotted down notes for and about her. This calendar very sweetly reads "Baby's first year. A keepsake calendar". I open it and flip to the back and stare at the sheet of stickers that never got to be used.

Ok, now I am pissed. The deepness of my anger and the way it quickly rose just by looking at a sheet of stickers, surprised even me. I was very angry at this point. I wonder, why am I doing this to myself? Oh yeah, I remember. Because I need her full and complete story. The health dept. wants me to tell it when I go in to pitch the Pulse Ox plans. In order to tell it I need to remember it accurately. My husband always asks me if I ever really dealt with her death. Of course I've dealt with it! I deal with it every single day! That is always my reply. He will say no.....have you ever REALLY dealt with it. I look at him like he is a moron. He has never had a kid die.....he doesn't know. That is what I always think. I don't have to hide this because he is aware of how my crazy brain functions. But at this point last night I am starting to wonder if maybe he is right. Maybe that is why I never wrote down anything. Maybe that is why her stuff has been shut away in boxes for years. I was busy I tell myself. Jason and I had divorced and I was raising these kids alone. Life moved to quick. I didn't get a chance. It was all I could do just to survive. These are things I have told myself for years. But maybe he's right. He would LOVE to have that one in writing :)  But seriously. Maybe, just maybe, this is where my anger stems from. Or at least it is part of the root? Well......I probably have a BIG root lol. But my root formation is for a different entry as well. SO, I go through her calendar. It was a very sweet pain. It brought back things I had forgotten and made me smile. At the same time, it made me profoundly sad. There is hardly anything in there. I could have sworn I wrote more than that.
When I got pregnant with Chloe, Carissa was one. We lived in Florida at the time. Jason had a traveling job and Carissa and I were just along for the ride. We lived in extended stay hotels and/or rental properties that the company put us up in. Jason worked about 70 hours a week and Carissa and I spent our days shopping and going to the beach. It was a pretty sweet life for us. Jason made good money and I blew it as fast as he made it. We were a happy little family. We had almost lost Carissa when she was born so we were very grateful for her and for her health. We didn't plan on having another child. We didn't plan on having the first child! Ha. I was only 19 at the time and was young and dumb. But we had her and we adored her and were very grateful for our teenage whoops. But she was it. We weren't going to whoops again. Buuuuuutttttttt we did! I had ran out of birth control while in Florida and thought to myself, no biggie because I was going back to Oklahoma (home) within the next few weeks where my insurance would cover it. I thought it would be okay to only be off a few weeks. Young and dumb I tell you. Young and dumb. I ended up pregnant right away. Ummm....what the crap?! That wasn't suppose to happen! My friend Melissa went with me in Florida to have a test done and sure enough it was positive. We laughed at my naiveness. We told Jason that night by having Shimeron (Melissa's son) hand the baby booties that the testing place had given me, to him. Not understanding what was going on Jason tried to explain to Shimeron that those booties probably wouldn't fit him. Shimeron giggled and told him they were for his baby!! Jason was confused saying there was no way these would fit Carissa, so we filled him in. He got excited pretty quick on this one. (With Carissa he had been in shock for hours and just sat silently!) Within a few weeks after finding out, we were transferred to Alabama. I should probably point out that all of my pregnancies were hell on earth. HELL! No joke. Those women that say they have never felt better than when they were pregnant.....well I hate them. My pregnancies were full of non-stop vomiting and constant dehydration. I was sick and I was miserable and I wanted to go home. So after only a few weeks of Alabama, we left. I needed to be horribly ill in the comfort of my own home with my family around for support. Carissa's pregnancy had gone so very very wrong that the doctor went a little overboard in trying to make sure nothing happened to this baby. He was getting on my last nerve with all the extra tests and what not. But after double the ultrasounds and tests and a few hospital observations, it was determined that this baby was going to be okay. So there it was....I was to have a perfectly healthy child. One that was not going to have to be born by emergency c-section 2 months early to save her life. One that wasn't going to spend the first month of her life in the NICU getting blood transfusions and struggling to breathe like my first. What a relief that was for me. Since I was cut up and down during my emergency c-section my first go round, Chloe would automatically be born by c-section as well as any other children I might bear. I was okay with that. I was 21 years old and my whole entire world was about to be flipped upside down.
I will stop here. I will pick back up with her birth and all the details that went a long with that. Some of my posts won't be written as eloquently as others, but that goes back to having to write in THE moment.

Until next time.......

Here we go..........

So, I created this blog to share Chloe's story. I get asked about her all the time and being the woman that I am, I have a very hard time just summing it up. I want to give you every last detail. Problem is I have trouble remembering every last detail. I have been telling myself for the last 10 years that I was going to sit down and write this story before the details slipped away. I never did it and now I fear that some things will never be remembered. It makes me terribly sad. But in order to write this....to take you on this journey through her life...I am going to have to dig. Dig through my memories.....dig through her baby book and calendar.....dig through her box of belongings that I packed away into storage bins shortly after she died. They are very rarely opened. When they are it is like having the wind knocked out of you every single time. But I want to do it. I am ready to do it. I think. It's not going to be easy for me. And I will probably be taking it slow. Writing in segments.

I wrote the top part, saved the draft, then went and started pulling stuff out of her boxes. Stuff that hasn't been touched in years. It was brutal. I have her baby blankets, covered in blood, laying on my bed. 

(You can't see the smaller spatters but you can see one of the bigger spots. This was a very special blanket.)

I have her books, keepsake boxes, calendars, and funeral book all sitting on the couch waiting for me to open them. I went to check my facebook and text one of my besties instead. I am very open with her about the torment of it all. She said maybe I should just put it up. But I can't. Not anymore. I have been putting it up for 10 years. So now I just keep glancing over there, seeing that little stack, knowing they are waiting for me. I know this is going to be part of the journey. So much has slipped away. It's been 10 years. It is time to write it down. 

I will read and I will write as the memories come flooding back. But when things get to be intense, or I feel as though I need a breather, I will write about my living kids and what life is like now. I won't divulge too much though. My husband hates the idea of blogging. He is a very private person and feels that in today's society nothing is held sacred or kept private. I know that every key stroke is recorded. That once I post this, it will forever be out there floating in cyber space. So I will not air dirty laundry. I will, however, discuss topics like step-parenting and blending families because I am currently fresh into it and would love your feedback! 

So.....I am headed to read the books. Here we go..........

Let's just call this one...About Me

If you are here then you probably already know me. If not then here are a few little fun facts to make you feel as though you know me. I have 4 living children & 1 angel in heaven. I love to take pictures. I love to swim. Writing is my passion although I very rarely do it. I love my family. It is huge and sometimes annoying and definitely the best thing that ever happened to me. I am strong and mean and yet I am very tender hearted and willing to help almost anyone. It's a crazy mix, I know. I love to camp. I appreciate when people spell their words correctly. I am not a fan of Ebonics. I like to surround myself with smart people because I love to learn. I love God. That should have been put in the beginning. I have strong opinions but I respect yours even when they are not the same and hope you can do the same for me. I'm not always as confident as I seem. I have sporadic mood swings. When I'm hurt, I withdraw. I threaten to run away from the situation that is causing me pain. I hate the doctor. I wear a lot of black. When I am down, I will often get something pierced. The physical pain reminds me that I am, in fact, still alive. I don't claim to be normal. I wouldn't even know what normal is. I love office supplies and makeup. I buy a lot of those things even though I have a ton of both. I love smell good hand soap. My kids drive me nuts but I wouldn't trade them for the world! And don't cross them because I am a mean momma bear. I have amazing friends. Amazing. I love the sun, the ocean, being warm. I love to travel. I wish someone would pay me to do it. I love a good sandwich. I admire integrity and honesty. I don't like drugs or what they do to people. I like to sleep when it rains. I probably waste to much of my life sleeping. I want to help people. I have lived through so much that I know that God could use me in a really big way if I was ever comfortable enough to share my testimony. I don't do it though, because it still bothers me to be judged to such a harsh degree. I am extremely hard on myself. I am my own worst enemy for sure. I care to much what other people think even though I don't want to. That is a work in progress. I am a tank top and flip flops kind of girl. I am a sentimental freak. I have had my heart broken. I am on my second (and last) marriage. My husband is way beyond amazing. Most days I feel as though he deserves so much better than a nut like me. Words can't describe how much I love him. My house is always messy and I don't care. I like for it to be clean, but we only get one life and I don't try to stress over the house to much. I cry. A lot. I think it comes from my deep sense of loss. I am a grudge holder even though I don't want to be. I suck at cooking, but am fantastic when it comes to sarcasm. I hate, DESPISE talking on the phone. Good luck getting me to answer it.....unless you are one of my kids. If you wanna talk to me, text me. IF i get a spare second i will text you back. I can't stand Christmas. It is all way too much. I have no patience. When I want something or want something done, I want it or want it done right then! I am a hard person to love. I have a short temper. I loathe people that try to tell people that have had children die when they should or shouldn't be over it and how they should or shouldn't feel. Until your child is dead, keep your mouth shut about us and ours. You have no idea and you should thank God everyday that you don't! I held my daughter in my arms as she died and it is an experience that I will never forget. I am always scared that I might forget what she looked like so I look at her picture daily. I never want to forget because it reminds me to quit taking life for granted. I often dream of running away, changing my name, and starting from scratch somewhere brand new....where nobody knows me or the billions of mistakes I have made. I am the most least perfect person you will ever find. I love, love, love to see people from my youth and talk about the good ol days. I am anal about my handwriting so therefore it takes me forever to write anything out. I am a music lover. Blending a family has been one of the biggest challenges of my life!! Honoring our soldiers is important to me. I should probably stop here. But if you are reading this then welcome to my blog!! In the following months I hope to share lots with you.

A day of HOPE.......

I am depressing. I will admit it. People don't like to talk to me sometimes because I am a living breathing reminder of the worst fear any parent could face. My daughter died at 6 months and 5 days. The problem is, is that I will talk about it. Go ahead....ask me. I am not afraid to tell you about the unspeakable anguish and pain that comes along with this ordeal. The reality is, is that other parents don't want to hear it. They don't even want to think it! Don't speak about the fact that children die too. It is too hard for most parents to even fathom that thought. I agree, it is hard. But so is losing your child and having everyone around you scared to mention their name for fear of hurting you. What hurts is you not saying anything. Pretending my child never existed. That hurts a million times more than you asking me about her. I know it is painful for you to listen. My child has been gone ten years and I still feel the pain of losing her. The grief isn't as fresh as it was ten years ago. Time has scabbed over the never to be healed wounds. But the pain and reality of life is there. Everyday. And I think about her with each passing occasion. Every year when school starts, I toy with the idea of what she would be like, look like, act like. Every holiday, birthday, death day, and every single day in between. I live with the very real finality of death. Women that suffer miscarriages and stillbirths often do so silently. Carrying that pain around and never sharing it with anyone. The pain is just as real for them. Their dreams shattered, their hopes crushed. It is a heavy burden to bear. Don't discount their pain.

I lobby for change in my daughters memory. One thing parents that lose a child is most fearful of is that you actually WILL forget our child. To people that did not know me ten years ago, my child probably doesn't seem real. She didn't mean anything to you. To you she is a cold hard piece of black granite with a name inscribed. So in hopes that her short time on earth brought with it some positive for the whole world, I push for change. I also speak out. Baby/Child loss is not a taboo subject. It is very real. So grab some tissues and suck it up. If you want to be a good friend to someone who has lost their child....don't disappear, don't expect her to be the same person she was before the loss, and least of all never assume she doesn't want you to mention her child because it is just to painful. Often you will find that it is quite the opposite.