Butterflies and Bruises

I. Was. Wrong.

2014-10-24T10:50:00.001-05:00

It's been over a year. I can't believe it. I haven't even looked at my blog in over a year let alone write on it. I always think that I am going to do better. I think I will get it all out. I will write it all down. There seem to be a lot of drafts in my saved box. Articles that I started to write and never got around to finishing. That is the story of my life. But back to today.......today two of my children did not have school.....AND I DIDN'T EVEN KNOW! Well actually I found out last night around 8 pm but that is besides the point. I keep wondering how this happened. How did I not know the kids were out of school today? When I very first started working, the mother that sat next to me would always complain that the schools made it impossible for working mothers. I ASSURED her that was not the case. I had been a stay at home mom for 4 years, I had been the PTA president, I had put in countless hours at the school, so I assured her that I KNEW that they did everything possible to let working moms know the happenings of the school. I still stand by that even though I didn't know my kids were out of school today. I told her how we sent home letters, we posted on facebook, we set up virtual calendars, and so forth and so on. I refused the idea that there were people being left in the dark. I was wrong. There are people in the dark. To all the working moms that I offended over the years, I apologize. I work really hard to keep up with my kids and my husband and the house and the dog and my homeschooling efforts and my daughters chronic illness and and and.......

While you were gone.....

2013-10-31T10:48:00.000-05:00

To my ex-husband........ Sometimes I think of how many times you have dropped out of our kids lives only to resurface later. Better and ready so you say. But not this time. Not.This.Time. Sometimes I get mad at you and think of how unfair it all is. I get to shoulder the financial responsibilities, the sickness, and lately their mental health (thank you). I think how unfair it is that you get to skate through life taking no responsibilities for your kids, your actions, or even your financial obligations. But then I remember...... I remember being there for the awards assemblies, the school plays and the class parties. I've been there through the hospital stays and the high fevers and the random sicknesses that have come their way. I helped your daughter dress and sent her off to the formal dance year after year. I take them trick or treating. I make sure their homework is done. I make sure they make it to practice, games, doctors appointments, and school on time, day after day.....year after year. These things are not unfair to me. These things are a BLESSING to me. This day will never come again. This will be the one and only time these girls will participate in Halloween as an 11 and 14 year old. This will be the only year that Carissa will be a freshman in High School. This will be the only time that Shelbie has a first year of middle school. They will both have birthday's soon. Carissa will never turn 15 again. Shelbie will never turn 12 again. Those birthday's will NEVER come again. There will never be a second chance for you to see their childhood. They don't get two. You are missing it. It's not "not fair" to me........it's a blessing to me. I am here. I see the smiles......I hear the laughs......I wipe away the tears. I even get the teenage hate. I wouldn't trade any of it. It is a blessing. You are missing it. This is just a few of life's precious memories that you missed. These are the good times. The times I will look back on......the times I will miss when they leave for college and start families of their own.

What will you look back on?

The first 24 hours....

2012-05-15T22:33:00.001-05:00

I picked up your baby book tonight and thumbed through it. For the most part it is empty. Page after blank page reminds me of all the things you never got to do. When I last wrote about your life, I left off where I was waiting on medi-flight to come and get you. It didn't take them long to arrive. Children's to Baptist isn't much of a drive. They sent me back to my room as they prepared you for transport. They promised to bring you down and they made good on their word. They brought you down in your isolet. Carissa hadn't been able to see you other than that brief moment in the nursery window right after birth. This was her chance to really see you.

She, of course, wanted you out of that plastic box. She had been waiting on you for 9 long months and she was ready to play! But they had to go. They needed to get you to Children's and get you settled and prepped for surgery. Your dad went, your papa went, and your aunt nini went. I was stuck at Baptist because I had just had a c-section less than 24 hours ago. Granny stayed with me. If I had to guess I would say she probably thought there was a good chance that I might fall apart if left alone. I still had yet to even get to hold you. My arms were empty and my heart was heavy. I tried not to think about what you were about to encounter. Open heart surgery? On a brand new infant? I was so lost and so confused.They told me that they had never had a case like yours before. They needed to do a video conference with other top doctors from across the nation to determine what would be the best plan for you. If I had known then what I know now, I would have asked better questions. I would have demanded a transport to Boston. I wouldn't have been so naive and trusting. I didn't know every hospital wasn't equal. I didn't realize the importance of having the right doctor. I busied myself by starting to pack up and demand my own release. My doctor was basically like heck no you crazy lady! You just had surgery! But I was persistent. He and I made a deal, I spend the night in the hospital and he would release me first thing in the morning if I promised to take care of myself and take it easy. Sure doc.....whatever you ssay. I told him that if he wasn't there to release me then I was walking out. I didn't care. He stayed true to his word and was there bright and early to release me. Granny rushed me over to the PICU at Children's where my baby lay waiting to be taken into the OR. I had never seen so many tubes and wires on such a tiny human. I cried. The nurse told me that you would be going back any time now and Granny told her that I hadn't even gotten to hold you yet. The wonderful nurses came in there and gathered all the tubes and wires and gently placed you in my arms.

It was one of the most precious moments of my life. You had brown hair. Not much, it was more like brown fuzz. You would be my only dark headed daughter. You have beautiful dark blue-gray eyes, although you do not open them. I didn't get to hold you long because your team of doctors came to take you away. They escort us to a personal waiting room to wait. I know why they gave us our own waiting room. There is a chance you might not make it through and they want us separate from the normal people in case that happens. They prepare us for the 6 hour wait we are about to encounter. They promise to call out with updates at least once per hour. I don't even know what I am feeling at this moment. I think shock is carrying me through. But dread is filling my soul. Please Lord don't let that short 5 minutes that I had with her be all that I get. The surgery begins. And so we wait........

Mother's Day and More

2012-05-13T23:26:00.000-05:00

This sucks. Mother's day sucks. I don't know why, it just does. It's not that I am not grateful for my living children because I am. I really honestly, truly, pinky swear that I am. I love them more than life. It is just that a piece of me is missing. And it will always be missing. You should be 11. You should be in the 5th grade. When I pour hours into volunteering at the school, I should catch a glimpse of your face every now and then in the hall as the 5th graders shuffle past. But I don't. And I never will. And people will always look at me and wonder why I am not "over it" yet. Why I still feel the sting. There are very few people that really understand. There are very few times when I will willingly admit that I put off the grief process for many years. I went over it, under it, around it, but never through it. Because, let's be honest, that wasn't any fun. In fact, it down right sucked. Like worse than this (or any other) holiday. I don't know where I am at on this journey. I'm lost. This whole feeling it thing is.....is......I don't know. There was a reason I didn't allow myself to "feel" any of it for so long. Maybe I'm not as strong as I want to think I am. Maybe I am just as lost as the next person.....

Monday Morning Memories

2012-04-30T15:06:00.000-05:00

I have been wanting to find the time and energy to sit down and write a new post for days now. But now that I have the opportunity, my mind is blank. I went back through my old posts and decided that I should write the next part of Chloe's story. I has been months since I wrote the first part, but I can't do that today. I don't know why. So I started thinking about all the things that came along with her death. All the emotions, all the hurt, all the inconsiderate things that people say. I started thinking about Chloe's older sister and what she went through. We have had a lot of kids in our community die this school year and I keep thinking about the siblings they left behind. When Chloe died, my oldest daughter was two and a half years old. A super smart kid. Very observant and very loyal to her sister. Chloe was HER baby. That is truly how she felt. When Chloe died, nobody had to tell Carissa....she already knew. She could feel it inside of her. She wasn't even at the hospital with us when it happened. I decided that she should be able to attend her sisters viewing and funeral. I thought it the right thing to do. It sucked to try to make a 2 1/2 year old understand death and I felt angry as I realized that some of my daughters innocence was being stripped away right before my eyes. At such a young age she was already learning how cold and unfair this life can be. The viewing and funeral went okay for her. Or so I thought. I will never forget one of the most heart wrenching experiences that I encountered after Chloe's funeral. It was probably a couple of weeks after. We had been visiting the cemetery daily and I though my daughter had done pretty well at grasping it all. She kept wanting to go get Chloe and I would patiently explain every day that we could not. That she was gone and going to get her was impossible. One day I was speaking with someone when really loudly and really angrily, Carissa informed this person that "MOMMY PUT CHLOE IN THE DIRT!!!" I was taken aback. I sat there stunned, with tears filling my eyes as I asked her what she meant. "YOU PUT CHLOE IN THE DIRT AND YOU LEFT HER THERE!" I tried explaining to her that we bury our dead, but she was two and there was no hope. She didn't get it. In her mind, this was all my fault. I had put Chloe in the dirt and left her there and refused to go get her. Carissa was ticked. And she remained mad at me for a long time. So now I had one daughter that was dead and one that was furious with me. Looking back on it, I can see that in her little mind she must have been wondering if I was going to put her in the dirt too. She was probably scared to do a single thing wrong for fear of what might have happened. I have never experienced such gut wrenching emotion as I did that year. Carissa eventually quit telling everyone that I left her sister in the dirt. What a relief the end of that phase was! I can honestly say that I thought I might have a breakdown every time I heard those words. I never wanted my baby to go in the dirt. Carissa is wise beyond her years and I know that is in part because her childhood didn't give her much time to be innocent and unburdened by the world. I still have my days of anger and sorrow that even words cannot accurately describe. My heart goes out to every child who has ever lost their sibling, their mother, or their father due to death. I know there is a grand plan. I just wish that I could see it. I made a video of Chloe earlier this year. I can't post it here but I can share with you the link. Please feel free to watch it. https://www.facebook.com/photo.php?v=10150700029472317
I won't leave it "public" forever, but I will for now. Until next time.......

The Storage Bucket

2012-04-12T14:30:00.001-05:00

It has been 4330 days since she left this earth. 4330. That seems like a huge number! It will be 11 years come June. Today I am washing her clothes. It took me that long. I have pulled out her huge storage tub several times over the years but could never make myself rifle through it and pull out all the clothing. This is probably because I put the pillow she died on right on top. That was a dumb move. So every time I open the bucket, I see the blood splotched pillow and I just return the lid. Today, I picked up the pillow and sat it to the side. I pulled out each item of clothing, piece by piece, and slowly placed it in the washer. The smell of being stored away has long since replaced her smell. I didn't open the bag that contained the clothes that I sent her to the funeral home in. I will save that bag for another date. But everything that I managed to keep throughout my many moves is all tucked away in there. Stuffed animals, blankets, crib set, her lock of hair, a bible the hospital gave me when she died, and on and on. I don't even know why I am writing about this. I just felt the need to share it with someone. Or maybe document this step for myself. Who knows. I'm kind of crazy like that. Maybe it is because so many of my friends are in the newer stages of grief and I want to let them know that it is okay if it takes you many, many years to make a small step. Society is quick to judge us, thinking we should be over that by now or wondering what the big deal is. They don't know and I pray for their sake that they never will. But I am sick to death of the stigma that surrounds us. It is frequently said that the grief of bereaved parents is the most intense grief known. When a child dies, parents feel that a part of them has died, that a vital and core part of themselves has been ripped away. And it is true. So what if it took me over ten years to wash my daughter clothes? And why does it matter to you anyways? Are you upset because I am not "better" already? I will never be better. And you will probably never stop being uncomfortable. You don't want to be faced with the fact that if it happened to us, then it could happen to you too. You would like to remain in that world where all is good and safe and that children outlive their parents. We are a horrible reminder to you that life doesn't give anybody what is fair. I will always be Chloe's mom. She will always be my middle daughter. When people ask me how many times I have given birth, the answer will always be three. Let's say I just magically got over it...what would you think if I never mentioned my child's name again? If I just let the grief completely go? Would it make you feel better. Would you deem me as normal at that point? Because I am pretty sure that if I just magically got over it then I would be the farthest thing from normal. Whatever "normal" is. Us parents are on a long, sad journey that can be very frightening and extremely lonely- a journey that never really ends. I will say it again, there is no timetable for grief's duration; there are no rules, boundaries, or protocols for grieving. Each parent will almost always become a new and different person. This is not a bad or wrong thing. Parents never forget a child who dies. The bond they formed with their child extends beyond death. We are survivors and have been strong enough to endure what is probably life's harshest blow. Don't judge us. We know why you encourage us to get over the loss. Grief due to losing a child is so painful that you just want it to go away. If only it were that easy! This message (rant?) could go on forever but I should probably stop here. I'll leave you with a few quotes and try to quit going months between writings. Until next time.....

The sorrow for the dead is the only sorrow from which we refuse to be divorced. Every other wound we seek to heal, every other affliction to forget; but this wound we consider it a duty to keep open; this affliction we cherish and brood over in solitude. - WASHINGTON IRVING, THE SKETCH BOOK , IN MOFFAT 1992, 270

and....

Parental grief is boundless. It touches every aspect of [a] parent's being...When a baby dies, parents grieve for the rest of their lives. Their grief becomes part of them...As time passes, parents come to appreciate that grief is [their] link to the child, [their] grief keeps [them] connected to the child. - ARNOLD AND GEMMA, IN CORR ET AL. 1996, 50-51

and lastly....

There is a need to talk, without trying to give reasons. No reason is going to be acceptable when you hurt so much. A hug, the touch of a hand, expressions of concern, a willing listener were and still are the things that have helped the most...The people who [were] the greatest help... [were] not judgmental. It's most helpful when people understand that [what is needed] is to talk about it and that this is part of the grief process. - DEFRAIN ET AL. 1991, 158, 163

Those little life lessons....

2012-01-11T10:06:00.001-06:00

Things I have learned in the last two days:
People will never cease to amaze me.
Sometimes no matter how badly you want to fix a bad situation, in the end it's better to just let it go completely.
I don't tolerate people that are rude just to be rude. I don't have to and I won't.
Deep breaths and the phrase just let it go repeated in my head works for me.
Love is an action and a choice you make every day :)

THESE are the people that matter most no matter what!!!

IT'S 2012 BABY!!!

2012-01-06T10:13:00.000-06:00

So I haven't been here since the beginning of November. Wow. I started the story and then just left you all hanging. I never really feel like my life is THAT interesting. Not enough to have people actually WAITING for me to post again. But I guess I am wrong. I know at least two people that want to read it :) This past year was rough for me. I don't know why, it just was. I always have Chloe days every now and then, but this past year seemed to be a Chloe YEAR. Or at least a few months anyways. Please don't tell me that it has been 10 years and I should be over it. It makes my blood literally boil. And I am really bad on holding grudges. It is one thing that I resolved to do this year. Let go of grudges. I say that through gritted teeth as there is some that will be particularly difficult. The new year has me feeling better mentally. We ARE only 6 days in though ;) I have picked back up my Pulse Ox project and have embraced my Heterotaxy family. I will start Chloe's story back and also start on those quilts....maybe. Until next time.......

Sweet November Rain......

2011-11-04T10:32:00.000-05:00

It is creeping closer. There are 25 days left until you turn(ed) 11. Eleven! Wow. Where do the years go? They keep slipping by so fast. Well at least when I use you as a reference point. Being a part of this blended family makes everything agonizingly slow. It's weird how depending on what you are looking at depends on how you view time. I remember the night before you were born. I took a belly picture. It is so weird because you are the only pregnancy that I did that with. Looking back on it I wish that I had done that with the other girls, but I always felt so big and awkward and well....just gross. I had hyperemesis gravidarum with all of you girls and it left me feeling the farthest thing from attractive. It was the least severe with you. Funny how that worked out. You know how all those women just "glow" when they are pregnant? Well that wasn't me. At all. Unless I was glowing from the sweat of the constant vomiting. But even then I was usually to dehydrated to sweat. Carrying a baby was literally hell on earth for me! And my brilliant self did it 3 times!!! People used to question why I had my tubes cut, tied and burned at only 22 years of age. I knew if I ever attempted another child that I would end up dead. Between you 3 girls, I had already covered all the bases in the "things that could go wrong" department. So the night before you were born, I proudly held up my shirt, standing there in a pair of your dads boxers and an over sized shirt, and I smiled. I had no idea that in less than 24 hours my world was going to be thrust upside down and shaken. My smile.....it's so naive.....so innocent. I was proud. I had made it dang near the full 9 months with you. I had extra ultrasounds and extra testing and everything said you were going to be perfect. It wasn't going to be a fight for you to live like it was for Carissa. We wasn't going to have to spend the first month of your life in the hospital. I was nervous but in all I was really excited to meet you. After all, you and I MADE IT! So at around 5am on Wednesday, November 29th, 2000, we headed in to Baptist Hospital where you were scheduled to make your appearance into this world at 8am via c-section. It was still dark outside. We discussed names. You were the only one that had a name when you were born. The other girls took awhile. Agreeing on something was never me and your daddy's strong point :) But you had a name. We were going to name you Chloe. But here you were about to be born and you still didn't have a middle name. So on the cold dark ride to the hospital that morning we tossed back and forth ideas until we finally agreed. You would be Chloe Mae Walker. It was so beautiful. I loved your name from the moment it was all pieced together. We got there and I shook with anticipation and fear. I was going to be awake for your c-section. This was all new to me. They gave me my epidural and piled on the warm blankets as I shook like a leaf. The doctor was a little late so you weren't born at 8am straight up as planned. They took me back. They prepped me. They made sure I was numb. I could feel them doing stuff to me but there was no pain. I just laid there quivering and silently praying. I locked eyes with Jason because I was to nervous to keep looking around. I felt exposed laying there on that table. Finally the doctor walked in, all scrubbed and ready to go. He started cutting. I could feel it but it didn't hurt. I guess my traumatic birth with Carissa had left behind some good scar tissue that needed to be cut through. It seemed to take forever although I am sure in reality it was probably only minutes. Finally at 8:23am, they pulled you out. You didn't cry right away. I only got to see you for a split second as the doctor held you over the divider. I thought he was going to drop you! Ha! You were all purple and slimy. They put you under the heater thing and made you cry. It was a sweet little weak cry but to me it was music. You were here and you were safe. I could close my eyes now. I think your daddy panicked for a moment as he tried to figure out how he was going to stay with me and go with you at the same time. He knew I would kill him if he didn't go with you so that was his final choice. It was a good one. He and the nurse took you down to the nursery where a bunch of people were waiting on the other side of the window to see you, including your sister. You were still purple. You had yet to turn pink. Not even close actually. You were more a shade of blue than anything. I wasn't there for all of this because I was still in the OR being sewed back up. But I guess your dad must of got to hold you up for everyone to see before being whisked away to the NICU. I guess during that brief glimpse your Aunt NiNi already knew something was seriously wrong and the look she gave my mom let my mom know too. Only they didn't know what. It would be a few hours before the doctors pinpoint what is wrong at this point. Also at this point, I was finally being taken into the recovery room where they pile more warm blankets on me and talk about my newborn. She was beautiful with her dark fuzz for hair. She weighed 6 lbs and 5 ozs and was 19 inches long. She would be my first and only daughter to have my dark hair. She had these dark bluish gray eyes and a whimper that was sweet instead of nerve wracking. I was laying there laughing with the recovery nurse when Jason and the other nurse came back.....without my baby. I got confused and serious real quick. They explained to me that they had to take you to NICU but to not worry because a lot of c-section babies had to go to the NICU. I guess they can get fluid and stuff trapped in their lungs. Something about not going through vaginal birth, and fluid and common......It was all supposed to make me feel better. But it didn't. I wanted to go to you right then. Jason went back. I had to wait until they moved me to my room and brought me a wheelchair. I probably would have just gotten up and gone down there if I could move my legs. I started staring at my legs, willing them in my mind to MOVE as the tears welled up in my eyes. This was supposed to be the baby that didn't have to go to the NICU!!!!! What seemed like days later (although reality says maybe an hour or so) they took me to my room. I demanded a trip down to the NICU. I can't tell you who all was there or what else was going on. I was confused. I sat in the NICU staring at you laying under your oxygen hood with a ng tube already ran. Sigh. I keep my cool as the nightmares of Carissa in the same place flashed through my head. We were asked to go back to our room so that doctors could come and talk to us. They came and said they had doctors come over from Children's hospital to come over and run some tests on you. Something was wrong but they didn't know what yet. The excitement of the morning was starting to fall away a little piece at a time. Shortly after, a doctor from Children's hospital was standing in my room. "We think your daughter might have a heart defect. It's pretty bad. We aren't sure what yet so we more doctors coming over to look and test now". I don't know what I felt at this point. I just remember staring at that doctor with my blank stare....willing myself to understand. I said ok and waited patiently for the next round of doctors. I was confused. Where was that healthy baby that I was supposed to have? There was an eerie quietness inside me as I waited. It's almost as though I was trying to convince myself this was all going to be ok while preparing myself on the inside for whatever was about to come. Hours passed and then finally there was a pediatric cardiologist standing before us. He was ready to talk now. "Remember how earlier we said we thought your daughter had a heart defect and that it was pretty bad?" "Yeah" was my very weak reply as I could feel that his next words were going to change our lives forever. "Well....your daughter does have a heart defect but it is about 3 times worse than what we originally thought. She actually has 3 major defects." He goes on to explain that in most of the cases they get one really major defect and then a bunch of other smaller defects that go along with it but in Chloe's case she had 3 MAJOR defects. He made sure to stress that to me. Explained to me that she also had no spleen at all and her liver was completely in the wrong spot. It functioned, but wasn't where it should be. As she grew there was a chance that her intestines could fall and rotate and if that happened then that would be intestinal surgery in the future. But for now they needed to take her back to Childrens with them because she needed open heart surgery. NOW. Only problem is, he explained, they had never had a case like hers before. They weren't sure how to proceed. All they did know was that if they didn't move quick, she would die. They already had the medi-flight ambulance on its way to pick her up and he was headed back to the hospital to pull together a team so that they could video conference with some of the best doctors in the world and come up with a plan for my baby. The room is spinning at this point and I am just staring at the doctor as he asks if I understand. Yes i said. And no. What the hell just happened??! I ask him about a heart transplant (how the hell did I move into survival mode so quick?! Heart transplant?! What?!) (P.S. remember this question for wayyy later down the line). He said no. That her best chance would be to fix the heart she was born with. I said ok, signed some forms, and quickly made my way back to where Chloe lay in the NICU. A nice nurse looks at me with deep sympathy. She snaps a couple of Polaroids for me and leaves them. Medi-flight will be there soon to take her away. She's not even half a day old! There wasn't even time for picture taking during the chaos of the morning. I stand by her bed with my hands on her, big giant tears sliding silently down my face. The doctor that delivered her slips in and watches the scene for about half a minute before putting his hand on my shoulder, turning me to face him and explaining that I didn't do anything wrong. Sometimes, he said, women that do everything right have sick babies. And sometimes women that do crack have healthy babies. There is no explaining it. It just happened. And it wasn't my fault. He asked me if I understood and I said yes. But in the days to come I would categorize every single thing I ate, drank or did while pregnant in an effort to understand. I would also learn that the missing spleen and organ displacement had a name. Heterotaxy. I won't learn how rare and fatal heterotaxy is for many years. There is no information on it and doctors don't know how to treat it. They consider you a CCHD baby and that is what I go off of for all the months that you live. I will leave you with me standing at her bedside with big giant tears of shock, terror and sorrow streaming down my face. My entire world has been drop kicked . From this point on, life is never the same. Now we just wait. They will be here to take you soon.........

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

2011-09-26T10:01:00.000-05:00

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,

2011-09-15T14:18:00.000-05:00

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)

2011-09-13T11:49:00.000-05:00

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......

2011-08-30T14:55:00.001-05:00

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

2011-08-30T14:40:00.001-05:00

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..........

2011-08-28T22:51:00.002-05:00

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

2011-08-27T13:45:00.000-05:00

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.......

2011-08-26T22:27:00.000-05:00

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.