12-18-13
Dear Sofia,
I'm writing this letter and giving it to you on your 5th birthday. How much you will understand now is uncertain to me, but that's ok. It's as much for adult Sofia as it is for 5 year old Sofia. I tear up every time I think about writing it (I think pregnancy hormones are only partially to blame), but I hope when you're old enough to read it and understand it, that it will make you smile. You are such an amazing child and you're so loved.
Five years is a remarkable milestone. Of course all babies are miracles, but you are extra miraculous given your beginnings and the things you faced in your first 5 years. Most of them occurred in your first few months. It was a turbulent time for us. While other moms I knew who had just their first babies too were worrying about their little one's first colds or first round of shots, which is a normal and reasonable worry, I was focused on how you'd recover from your first heart surgery and then how you'd handle your second heart surgery (which you sailed through, by the way). That was a surreal place for us. We were blindsided by your diagnosis and we had a very steep learning curve in the world of all things cardiology. My maternity leave seemed so short, but after your first month in the hospital you came home and things went smoothly. We got to just enjoy you. We were lucky enough to have grandma to watch you when it was time to go back and I knew you'd be in good hands.
I'm not really good with words of wisdom or saying profound things, but I do want to tell you that I think one of the things that I have learned a little bit more about since you were born, and what I hope you will also have one day is perspective. When you were born, it was without a doubt the happiest day of my life and you and Adelaide (and this new little one coming soon) are the things in my life for which I am the most proud. When we found out that your heart was sick and that you needed surgery, it was a scary time and I couldn't imagine our days being "normal" ever again. But, as you did better, we did better. You grew, and we grew. I came to meet more and more moms and families and children with heart conditions and I started to appreciate that as rough as you think you have it, that there is probably someone out there with worse news to cope with. It doesn't always make what you're dealing with easy, but it there is a bit of appreciation that things could be worse. I learned that although we felt at one point in the beginning that our world had crashed down on top of us, some are right in the thick of things, and some kids don't get a fair shot. That you were given a great chance to live a happy and normal life is a gift. I hope that when you have your lows, which we all do, you let yourself feel that way, but then take account of all the things that make you fortunate. We faced lows when you were in the hospital over a month, when recovery was slow, filled with ups and downs, and you were feeling lousy. Then we learned you had neighbor on your hospital floor, a little boy who was probably 3 or 4 who had already been there several months waiting for a new heart. We could only imagine the difficult time he and his family were going through. (After we discharged, we heard he got his new heart). It was hard for us when you were admitted, discharged, and readmitted to the hospital more than once, but overall we knew we were very fortunate.
What I know, Sofia, is that nothing can stop you. Without even realizing it, you've been through more than most do in their lifetimes. You probably won't remember your surgeries, and now you handle your frequent blood draws, check ups and daily medicine in stride. It has been so rewarding to see you grow up over the past 5 years. Nothing can bring a smile faster to my own face than watching your excitement as you make friends, go to school, look forward to Christmas, learn new things, and experience all things that other kids your age are experiencing. I wish there were things that 34 year old me could have told 29 year old me when you were born. If I could have just seen you as you are today, so much worry could have been eased. I remember in the early days after you were born, when you were teeny tiny, we trekked back and forth from the Cleveland Clinic everyday. As I was leaving one day, I passed a mom and her daughter, who was about your age now. They were holding hands. I was stricken with fear that we might not get that chance to experience something simple like that. You have pleased all your doctors with how bright you are and how well you are doing, and we know that day in and day out. You are smart, curious, and rambuncous. Yet, you are a sensitive little soul. I am so lucky to by your mom. I love you, baby, and hope you have the happiest 5th birthday and many, many, many more we share together.
Love,
Mom
You've come a long way Sofia!
Happy 5th Birthday!!
