Letter to Lucy at one year

Dear Lucy,

Baby girl, I love you. You are the daughter I always dreamed of. In some ways, you are so like me. You have my eyes and my hair (although you were born with yours!) and my long fingers and toes. But you are so much more.

You are so many things I want to be and you are only a year old. You are feisty and sweet and strong. You are loud and have been since the beginning. You let people know when you need something or are not happy with something. You know how to stand up for yourself. I hope you never lose that. Your first night at home, your father and I just kept saying, “She’s so LOUD”. We secretly loved it.

You are so sweet and dear. You have the sweetest smile that chubs up your cheeks and shows off your one dimple (again, like mine) and lights up your eyes. It shows all of your teeth. You don’t give away the smiles or laughs. People have to earn them, but you’re not snotty about it. It just makes people feel good when they do make you smile or laugh.

You have such a funny, unique laugh. It didn’t even sound like a laugh at first, but I was sure that was what it was. No one believed me, but I turned out to be right. I’m sorry to make this comparison, but it is somewhat reminiscent of Pee-Wee Herman’s laugh. It sounds like it’s being forced out of you. You don’t always smile at the same time. One can never be sure whether you’re really happy or about to burst into tears. But that’s just you. You’ve kept us guessing since the beginning.

You are an Aquarius and a Dragon baby. My friend and acupuncturist Dixie was thrilled when she found out you were going to be a Dragon baby and even more thrilled to find out that your Daddy is one, too. You came 11 days after your due date. Even though everyone thought you looked like a perfect, forty-week baby, I like to believe you chose to be a Dragon baby. You are going to need all of those Dragon and Aquarius traits and all of the Lucy feistiness we have seen so far. You’ve had some really unfair challenges thrown at you. But you will be fine. You will rise to every challenge. I know it. And I will be with you every step of the way. We are learning and becoming stronger together, even if somewhat against our will (against mine anyway), but we are going to be better and stronger and closer because of it. We will appreciate everything we have all the more.

You say three words – “mama”, “dada”, and “no”. Your “no” is very strong and determined. And adorable. I can’t help laughing every time you do it and egging you on. You make the cutest face when you say it. You pull such a long face and round your mouth. Sometimes, you also cross your arms across your chest when you say it. You’re already a little diva. J

You don’t crawl or walk yet, but it seems like you might skip crawling altogether. You try very hard to pull up and can take steps behind a push-toy with help.

I really don’t know how to express how amazing you are. You have such a sweet, resilient spirit. You are so beautiful and smart and funny and strong. You make us all laugh. It is wonderful to watch you grow and interact with you more. I can’t wait to see more of the person you’re becoming.

I’ve been dancing around the most shocking development in your life this year. I wasn’t sure I wanted it to be part of this letter. I didn’t know if it needed to be. Hopefully, whenever you read this, you’ll nod your head and think, “Oh, yeah. I had a serious heart condition as a baby. Thank goodness that went away/is under control with medication. Really dodged a bullet there.” The truth is, I don’t know where you’ll be with that when you read this. I believe you still have a very good chance of getting better. I believe it will, at the very least, be a condition fairly easily controlled, so you can live a normal life.

There have been some developments since I first started writing this letter. You ended up spending three weeks in two different hospitals, Dell and Dallas Children’s, and we were terrified we were going to lose you. You showed signs of a dangerous arrhythmia the night before you were to be discharged from Dell and you and I took a helicopter ride to downtown Dallas the next morning.

I never thought I would have to stand there and hear doctors repeatedly tell me my daughter could die at any moment. I never thought I would be in a situation where I would go to sleep at night and be afraid you wouldn’t be there in the morning. I never thought I would be sitting next to a bed in the cardiac ICU of a children’s hospital, crying over all of the clothing I bought for you in bigger sizes that I was afraid you would never get to wear. I never thought I would have a daughter on the heart transplant list.

A new rhythm doctor finally came to us and told us she didn’t think you were likely to have a serious episode. I still can’t believe that really happened. I hadn’t even dared to hope that would happen. I was just hoping you wouldn’t have a serious episode. To be told suddenly that the situation probably wasn’t dangerous after all … I was stunned and then more grateful than I have ever been in my life.

I go back and forth between feeling cursed and blessed by this situation. I have been forced to be ok with uncertainty and to live in the now. Those things are gifts. But I don’t want the price to be your health or your life. But I’ve started to think that this was your destiny. And God or Fate or whatever you want to call it, knew we had the resources to make sure you got the best medical care. He knew that I’m OCD and detail-oriented and have a great memory. He knew I find medicine fascinating. He knew I would be crazy enough to sometimes think getting a heart transplant could be a big adventure. I don’t want it, but if it has to happen, we will embrace it. We will rock the shit out of this life and this adventure and these obstacles. We will sometimes collapse and cry, but we will get back up together. I want to be your mother. If being your mother means medicines and endless doctor appointments and paperwork, then that is a dream come true. I just want you.

Right now, you are stable. You’ve had a fever this week. A low one, off and on. But we’ve managed to sidestep the hospital so far. We are all tired and under the weather. I’ve felt low at times. But I look at your face and it makes it all better. We are all alive and at home and together in this moment. That is really all that matters. I truly feel that way. We are winning our way through to an amazing future and our troubles are allowing us to appreciate what truly matters. In a way, we are the luckiest family in the world.

I love you so much. You have made life richer and helped me to be stronger. I will strive everyday to be the mother you deserve. Happy birthday, sweet girl.

Love, Mama (or Uuuuh-ma, as you say it sometimes)


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