My (Actual) Darling Daughter

I have been neglecting this blog for a long time. I'm not 100% sure why, since I have been learning a lot of great life lessons I would want to pass down to my daughter someday. Oh yeah, and I have AN ACTUAL DAUGHTER now!! Her name is Joyce Eden and she is perfect. 

Joyce, I knew from the moment I met you that you were meant to be my baby. I have never felt so deeply about another person before, and I cannot imagine loving you more than I already do (though I know you'll do something later that will explode my heart even bigger and I will somehow manage to love you more). You're almost a year and a half old now and you are the most perfect child. I mean, you have your moments, as all kids do, but there is just something about you that is so sweet and so special.

When you were born, I was completely amazed by you, but the doctors were concerned about some of your features. Your ears were tiny. One stuck out, and the other was pretty flat against your head. They were also lower than normal. Your lower lip would also droop to one side when you cried, or yawned, or opened it in any way. And you had two small holes in your heart, so periodically a nurse would have to take you away from me and run some tests to make sure there wasn't too much strain on your tiny heart. To me, though, you were the most beautiful child I had ever seen. Everything about you was perfection. Your pediatrician dropped a bomb on us before we left the hospital, though. She was concerned you had Down Syndrome or another chromosomal abnormality. We had some blood work done, but we would have to wait a week before finding out. I was so grateful you were a healthy baby, but so worried about the results. You were our first child and we weren't expecting any complications. Your dad and I felt completely in over our heads. We had never raised a child before, let alone a child who would need extra care. It was daunting. We prayed a lot. 

The week went by and your test results come back. No extra chromosomes, everything looked good. We still had to see special doctors for your heart and to figure out what was causing the abnormal structure of your head. You were finally diagnosed with a hemifacial microsomia (more generally known as a craniofacial microsomia). What that means for you is that the shape and structure of your head and the lower half of one side of your face is underdeveloped. We were living in Indiana when you got the diagnosis and I'm not positive the doctor had ever seen a case like yours before. We didn't have a solid plan for how to take care of you. I kind of figured you would just keep growing normally, but your face would always be a little crooked.  

When you were about 8 months old, we moved to Utah. We lost our health insurance and it took me some time to get it back. Then your dad got a full-time job with benefits. We waited to take you back to the doctor until you could be insured through his work. Your pediatrician here hooked us up with some really great resources. We finally met yesterday with a plastic surgeon who specializes in facial abnormalities. He gave us more information in a short period of time than anyone else had given to us in your lifetime. It was overwhelming for me. There was so much more that needed to be done than I had ever expected. First, he told me that your forehead had a ridge-line in it that can happen with children like you, but isn't entirely normal. Since your head narrows a bit behind the line, as you grow, your skull could start putting pressure on your optic nerves (causing damage to your vision) and it could hinder the proper development of your brain. NO ONE TOLD ME THIS BEFORE!! I had no idea that by letting you grow normally, I would have done so much more damage. This news shook me. I don't want you to go blind or have brain damage. We have to get a head CT scan for you and we can move forward from there, but there may have to be a surgery to ensure your brain has room to grow. This makes me very nervous, because you are so tiny. 

Of course, that wasn't the only news. When you get to be about 5 or 6, they will have to take a section of bone from one of your ribs and use it to reconstruct the side of your jaw that is underdeveloped (they have to wait that long for your ribs to be the right size). If they didn't do that, your face would develop completely lopsided, since one side would continue to grow and the other wouldn't. I also hate the idea of this surgery, since you will still be so small and they will be working on more than one part of your body. Plus, they might have to do surgery on your ears, but that would probably be the last thing they would tackle. 

It breaks my heart so much that you're going to have to go through this. I feel very lucky that we currently live in a place where there is an entire team of doctors who are dedicated to working with children like you. They will help us to create a plan and get you on track to be as healthy and developed as possible. That is only a very small silver lining right now, though. I have cried multiple times thinking about you and how special you are and how this life is not what I wanted for you. You will constantly be seen by doctors. You will be operated on more than once. You will have to go through tests and scans. And you're not even two! You deserve a better life than this. You bring so much light and joy to the people around you. You are so small, yet already so gifted. But even though this is not going to be an easy journey, I promise to be with you the whole way. As you get older, and we find out more about your condition, I know with increased surety that you and I were meant to be together. I have already learned so much from you, and I hope that I can be the best mom for you when times get even harder. You are the most precious thing to me, and I will always love you more than I can even say. 

Forever Loved. 

-Mom

(P.S. if there are any other craniofacial parents out there, please feel free to share your experiences. Now that I have a darling daughter, I'm going to dedicate this blog to telling her about her life and struggles. I want her to know how tough and amazing she has been since day 1, and I would love to share her journey with parents who may be facing similar challenges.)