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