So......How many kids do you have?

Sounds like a pretty simple question, right? Should be one of the easiest question a person ever answers, but it is one I struggle with all the time. I honestly never know what to say. I usually end up giving a big long story and people usually end up looking at me like geeze lady, I just wanted a number! How do I even begin to explain my kid situation? If I try to make it simple and just say 4 then not only do I feel guilty but I usually have people tell me I look really good for having 4 kids. Grrrr. Then I have to explain that I didn't give birth to four kids.....only three......but two of my four are step-kids. Then I get that confused wtf look. So, I start from the beginning. I gave birth to three daughters. The middle one died at 6 months of age. I later remarried gaining two more kids that I raise on a daily basis......that I hate to refer to as step because it feels as though they are very much mine. I often wonder how calling them step makes them feel. Also, I wonder how it makes their biological mom feel when I claim them and don't refer to them as step. I am sure she is thinking those are MY kids! And rightfully so. She DID carry them for 9 months and give birth to them. They are hers. But where does that leave me? Between a dead daughter, two step-kids, and two biological kids......what am I to say?

Another constantly need to be explained situation......Why I have 2 daughters the same age, same grade, same teacher, with two different last names. Before the last names are said it's, Oh....you have twins? Then it is usually followed by that person trying to figure out how I have two kids, with two different baby daddy's that are mine. Same age. I am just good like that people (:

Dear Chloe,

Hi baby girl. Mommy misses you. I think about you every single day. I can't believe that in two months you will be turning 11. I keep thinking about things I want to tell you....words I want to say. I wish you were here. I wish I knew what you would be like. I am learning Chloe. I am learning so much! About what your defects really were and how serious of a case you were. I knew you were serious....but I really had no idea. You see today, 10 years later, there is so much more information and technology available. If only you were born now instead of then, maybe they could help you. I've learned about Heterotaxy. You had right atrial isomerism. Turns out it is the most rare and complex congenital heart disease you can have. One of the studies said that for every 1,000,000 babies born, 4 of them will have Heterotaxy syndrome. It also said most children with Heterotaxy syndrome and significant heart problems will not survive beyond the first year of life. When you died they told me I should be grateful that I got the 6 months and 5 days that I did. But it wasn't enough for me. I can't imagine that it would be for any parent. Turns out the majority of doctors are confused by the syndrome and vary rarely know what they are doing when it comes to dealing with it. Although, you will never hear any of them admit that. As I learn more about your heart defects (TAPVR, DORV, and AV Canal), I figure out that you actually had so much more going on besides that. I think the doctors were trying to be as simplistic with me as possible. I was so young and they assumed that meant I was stupid. Or maybe they just didn't really know. I wish you had lived during the digital age. What I wouldn't give to have a full album of photos. Because of you, I now take thousands and thousands of photos constantly. I get a little out of hand with my picture taking but I would rather have too many than too little. I learned my lesson. I have met a couple of mom's that have living sons that have your exact same defects. I read their blogs and I think of you. One little boy, Logan, has become very special to me. He nor his mom probably have a clue. I don't say anything usually. I just read. I actually had to start at the beginning of his blog because I want to see what his whole life has been like. I take it slow because I can't help but think of you. Would you have gone through the same things he does? I am jealous of the fact his mom documents it all. I wanted to do that but I didn't. Why oh why did I not write as it was going on?! I hate that baby girl....I really really do. I can relate to so much of what she talks about. It's like this girl understands. Like she REALLY gets it! All the conflicting opinions and the mass bulk of opinions always coming from a million different doctors and nurses. I wish I had taken you to Boston when you were alive. I wish I had known half of the stuff I know now. I was so naive....so trusting. I hate myself for that. It is a cross I bear every single day. I wish I knew how to forgive myself. I wish I knew how to live life without the what if's and maybes. As much as I wish that i could, I cannot turn back time. It marches on. And even though when you died I didn't think it would be possible, I kept on living. I remembered the first time I laughed after you died.....I felt guilty. How could anything possibly ever be funny again? But eventually I got past that and now laughter plays a huge part in mommy's life. I have to laugh. It gets me through. Some people think that since it has been ten years that I should be over you. I don't think I will ever be over you and I think those people are insensitive morons. Grief has no time table. It became a cycle I will repeat until the day I die. You were mine and I miss you. It does not matter that I only had you for 6 months. Apparently people associate the allotted grief allowed to a child's age. What a crock! It does not hurt less because you were younger! Sheesh people! I've learned that a lot of today's heart babies are diagnosed in utero. I wonder if it would have made a difference if we knew what we were about to encounter. Maybe. Maybe not. I will never know. What I do know is that I did my best with what I had and what I knew at that time. I am so sorry it wasn't more. If I could do it all over again.........well.....I won't even entertain that thought. We both know it would be different. I miss you. Every.Single.Day. And Carissa misses you. And even Shelbie misses you! She is mad that Carissa got to meet you and she didn't. Your sisters love you and I know you would have loved them. You and Carissa were so close when you were alive. She was 2 and half when you died. She blamed me. She was oh so mad at mom when "her" baby was gone. We don't let your memory die. We try to do good things in your name. I don't wish this on any parent and if I can help save even one child's life by using what I learned for you......well then I guess it will be worth it. Only that's kind of a double edged saying because I don't know if losing you is worth anything. That's a tough one to word properly. I don't know how to wrap this letter up or if I even said everything that I set out to write. I just started typing and my fingers sort of took over. I want to show you something.....

We were on the beach in Mexico recently and I really wanted a picture of your name in the sand with a heart around it. We would draw it and before I could snap a picture the waves would rush up and wash it away. We tried several times, moving to several different spots on the beach....all to no avail. It was crazy! We had managed to write everyone elses names in the sand and get a picture. I finally got one and it was super sloppy and the heart was deformed. So I gave up and I let the ocean wash it away. It seemed fitting anyways. Turns out, I love this picture. It fits so well. I want you to know that anyone that ever met you will always remember you. At least I think and hope they will. You have even touched people you never knew. Stay with me baby girl and help mommy on those bad days that seem to creep up when I least expect it. I miss you and will see you soon. Until then..................

I Love You,

Mom

Fake(ness)

I haven't been on here in awhile. When I left for vacation I had a total of 430 page views. When I came back after about 10 days, my page views number was sitting somewhere around 750. WOW! Now I feel guilty for being away for so long. Like I just left all of my readers hanging or something. None the less, I am home. We took our first ever vacation as a blended family. We cruised with Carnival down to Mexico. First port was Progreso. Second port was Cozumel. In Cozumel we swam with the Dolphins. SO FUN! They are incredibly soft. I don't know what I expected. I think by looking at them that I assumed they would be all rubbery and that wasn't the case at all. Anyways, the trip was.....memorable. That's a good word. And I look forward to sailing on the Carnival Magic next year!!

(View from my room. The ocean is my favorite!) I returned from my vacation to immediately head up to Kansas City, Missouri with some of my favorite girls to celebrate one of my close friends upcoming wedding. Fun times with the girls! I came home sick. I spent my entire first day back, in bed and unable to swallow. I guess the tons of traveling and millions of germs didn't agree with my immune system. So, that brings us to today. I am not 100% but I am a little better. I am up at least! And since I am awake and aware and not on the road, my mind has been wandering all over the place. That brings us to the title of this blog. Are you wondering why I titled the blog about my vacation as fake? Me too. But I guess that it is because this blog has nothing to do with my vacation. That was merely an introduction and a brief explanation of my absence. I came home from vacation to find the heart community that I am a part of, in a state of disharmony. It is unsettling. I love being a part of this group! There are about 600 of us that laugh, cry and pray with and for each other. We all understand. We have all been there. Our children were born with heart defects. We face(d) the open heart surgeries and countless medications and things that nobody can possibly understand unless you lived it. This online support community did not exist when my daughter was alive. My how I wish it had!!! But we talk about important things and we push for things to be better for the heart babies of the future. So it goes without saying that I love this group! And these men and women that talk of their experiences freely in hopes of helping another. Upon arriving home, I caught the tail end of the scandalous activity that was going on. It seems there was a fake amongst us. Now why people make up profiles and pretend to have a dead daughter or son is way beyond anything I can comprehend. All I know is that this is the second time I have let a fake person have access to my information unwillingly. I don't give a lot of personal info but I do have pictures. I don't ever think about the dark side of the internet. I have this blog open for all to read. I guess that is a scary thing. These women stole pictures of other peoples infants and posed them as their own. WHAT??! I am still floored by the most recent accusation. The first girl I had been friends with for over a year. She had befriended me online because she noticed that her and I shared a common bond. Our babies had the same death date. We talked often. I grieved for this girl. I had never met her in real life, yet a piece of my heart laid with her and her dead babies. I was in disbelief when someone posted in the community that it had come to light that her profile was fake. How could it be fake? Our babies had the same death anniversary. Not the year, just the day. It had to be true. People wouldn't make something like that up. I wanted to give her the benefit of the doubt. I went to talk to her and she was gone. Everything deleted. It bothered me. I still didn't want to believe it. Regardless of what I did or didn't want to believe, I decided to take precautions. I went through my "friends" and deleted at least 75 people. They were people I didn't really "know" or rarely, if ever, talked to. This newest fake was deleted during that sweep of mine. So this newest discovery didn't hit me as hard. I had deleted her months ago. But it has shaken my faith in people. You see when I took on the position of advocate for Oklahoma Pulse Ox, my friends number grew. Over the last few months I have added back tons of people for the sake of spreading the word and gaining support. Now I sit and look at it all, dumbfounded. Should I delete people again.....should I close my account (again).....should I let 2 bad apples ruin it all for me......should I set this blog to private??! How am I going to reach people that need help if they can't view it? Why in the world would someone fake the death of their child?! I realize that mental illness is at the core of both of the situations but it deeply disturbs me. I don't like the dark side of the internet. I don't like drama. I don't like fake. And I don't know what to do.

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.