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.