Welcome. These are letters to my unborn daughter, Lily Grace Smith. She has a rare chromosomal disorder called, Trisomy 18 or Edwards Syndrome, and is not expected to live through infancy. These letters are my attempt to communicate with her all the things a father wants his daughter to know. They represent the conversations and the advise that I want to share with her. Please feel free to read the letters and to comment. In return, I only ask that you make sure your children know how much you love them.
Hey little girl. We have been busy getting ready for you to enter the world. Some of the things have been bitter, but most have been sweet. The sweetest of all was getting to see you all grown up at the ultrasound yesterday. It was great to see you smile, stick out your tongue, and even growl. It's so hard for me to see you on there and not get my hopes up that everything will be "normal" after your delivery. You are smaller than you should be, and you may have something going on in your little brain, but you seem so active. It's baffling. People say, "Watch. She'll prove everybody wrong." God, I hope so. But in my mind, I know that you are like a loaf of bread with double the salt. You can use the best oven, but it will still not come out right. The funny thing is that I would open my arms wide for a baby that was not normal. I just hope that you had that little talk with God, like I suggested. I hope he hears all the prayers everyone is saying, and he lets you stay with us for a long, long time. Only time will tell. That's the problem, though -- the unknown. I'm excited though. I will not let fear rob me of my joy! Do you hear that? No matter how much it may hurt, I will not drown out this emotion just to feel safe.
I watched a very inspiring movie the other day -- August Rush. I hope you heard it -- felt it. It is a story about how music is the tissue that connects all of us. In your honor, I have put a couple of the songs on my playlist. I was fascinated by the little boy's relentless search for his parents. Everyone told him to give up. The odds were to great, yet he believed. He had no doubt that he could connect with his parents with the music that was living inside him. It is one of those movies that allow you to believe in the impossible. I was touched. I was able to set aside my scientific mind and believe that maybe . . . maybe. Get some rest and keep growing strong. You have a great journey ahead, my girl. Just follow the music coming from my heart. I will find you.
I love you without knowing how, or when, or from where.
Daddy
PS Here is one of my favorite poems, alluded to above. It will let you know just how much I love you.
Love Sonnet XVII
I don't love you as if you were the salt-rose, topaz
or arrow of carnations that propagate fire:
I love you as certain dark things are loved,
secretly, between the shadow and the soul.
I love you as the plant that doesn't bloom and carries
hidden within itself the light of those flowers,
and thanks to your love, darkly in my body
lives the dense fragrance that rises from the earth.
I love you without knowing how, or when, or from where,
I love you simply, without problems or pride:
I love you in this way because I don't know any other way of loving
but this, in which there is no I or you,
so intimate that your hand upon my chest is my hand,
so intimate that when I fall asleep it is your eyes that close.
I thought a lot about you today. You woke me up last night, kicking me in the back. That's OK, I don't mind. I feel like I have been walking on eggshells. I want to be excited for you to get here. I want to imagine bringing you home. I want to envision your smile, your wondering eyes, your little hands and feet. Trust me, I would rather think about all of that than to think about where we will lay you down, and in what casket. Some defense mechanism keep me from daydreaming about all the happy days we might have. Today, I let in one thought that maybe you are that one-half of one percent (or whatever it is) that has a false positive or that your case isn't as severe as others and you will be fine. I am not a superstitious person, but it is as if me thinking about those happy times will keep them from happening. I can hear you saying, "You're silly, Daddy." I know. I'm working on it, OK? What I can say with certainty is that there has never been a father who loves his daughter more than I love you. As Paul Simon says, "As long as one and one is two . . . woo-hoo."
So, you have about five weeks left to grow in there. Can you believe how quickly time has passed? I actually wonder how time passes for you. I mean, there is no clock for you to read. I bet it is getting a little crowded in there though (I hope, because that means that you are getting big). Sit tight little one. Mommy worries that you are not as safe in there, near the due date. I know better. There is no one on earth (me included) who could take such great care of you. She has a sacrificial heart, and she will do and has done absolutely anything and everything she can for you. She amazes me every day. I just hope you get to feel that love from the outside. If not, I know you can already feel it.
I love you little girl,
Daddy
PS Please feel free to wake me any night.
How are you little one? You gave mommy quite a scare the other night. She thought that you were on your way. You will come when it is time, we know that; but I want you to stay in there, safe and warm for as long as you can. Trust me, it is the safest place you will ever be. This world can be cruel, especially to those who are "different." You are fighting right now, and when you do come into this world, I will protect you. Just know that the longer you are with us, the more you will have to fight. I, and everyone who loves you, are in your corner. We will savagely defend you, but we can't protect you from every ugly thing. Some will think of you as less than they are. There are some pungent words -- retarded, defective, and others. They are like a hiss from a snake. Some will wonder why we ever let you come into this world. They will say, "How can you call that living?" To them, I will say, "Someone let you come into this world, and if you have that much hate in your heart, maybe I should be asking that person why they brought you into this world." Don't get down though. Most people in this world will love you. Know that we outweigh those who will turn away in disgust. Keep your focus on us. We will be sending love your way.
So, take your time. I can't remember what it was like in there, but I bet it's cozy and I know your mommy is taking great care of you. I make sure she eats her vegetables ;). I will see you in a few weeks. I can't wait to meet you, but don't hurry.
Love to the googolplex power,
Daddy
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