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I Wish I'd Known Then What I Know Now

02/23/2015 09:46 am ET | Updated Apr 25, 2015

Dear Addison,

Five years ago today, we met you for the very first time. Your body was broken. Your cry was weak. Your grasp was nonexistent. Your muscle tone was low.

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I will never forget bending over your bed in the NICU isolation room with my mind full of questions. I didn't know how to be a mother, let alone to a baby who was so sick. I didn't know how to love a baby, let alone a baby with Down syndrome.

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I wish I could say that after 20 weeks of pregnancy worrying about that call from the genetics counselor informing us that "your daughter has Trisomy 21," I held you and all worries fled. I wish I could say that I wrapped my arms around your warm body and knew that your Down syndrome diagnosis meant nothing. But the truth is, I couldn't hold you. I wasn't allowed, and my worries had center stage in my mind.

As I bent over your bed in the NICU, all I had was questions.

My sweet Addison, one day perhaps you will read all of the things that I have written about you. Maybe you will know of my doubts, of my fears. Perhaps you will read about me having to answer my OB/GYN if I just wanted to "let nature take its course since your baby will be handicapped," or if we wanted intervention to save your life. Maybe you will hear that we had no birth plan because we didn't know if you would make it that far... or if you would survive the birth at all. Maybe you will read about the questions in my mind as I, a brand new mom, bent over a NICU bed. Maybe you will read about me shouting, "Why, God? Why us? What did we do to deserve this?" inside my head as I stared at our impossibly sick baby.

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Maybe you will read about your long recovery, your surgeries, your therapies, and your oxygen machine. Maybe you will read that blog post about getting your gastronomy tube finally taken out. Maybe you will see the thousands of pictures that I have snapped of you through these last five years as I worked through my role as your mother.

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But as you read these things, my darling girl, I want you to remember something very important.

On February 6, 2010, the broken thing was not your body, weak and fighting. No, the broken thing was me. The strange thing is? I didn't even know it. You were whole and perfect from the minute you were born. There was never anything wrong with you.

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These last five years I have watched you grow. I watched you go from fighting for your life to typical infant type stuff. I watched you go from infant to toddler. And even though you took your sweet time in each of these phases, and transitioned quite slowly... I have now watched you go from toddler to little girl.

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These last five years have been the best five years of my life.

I know I am supposed to be the teacher, the mother. But the truth is, you have taught me more than I'm sure I have managed to teach you.

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You have taught me that a diagnosis doesn't mean anything. A diagnosis is simply a medical description. You were meant to be this way. You were created this way. You are perfect exactly the way you are. A diagnosis doesn't take away or add to this. A diagnosis doesn't add sparkles to your life or utter a death sentence of gloom. A diagnosis is simply words on a page. Lines and curves that add up to mean something, but really... nothing.

You taught me how to open my heart and love even in the midst of fear. You taught me how to keep loving, and how love eventually sweeps the fear away.

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I can still see the look on your face when you went into your surgeries... and the look on your face when you woke up. I will never be able to forget the furrowing of your brow as you try, try, try again to master that next skill. The grasp of your hand against mine as we walk together, the sound of your footsteps pitter-pattering all throughout our house, the magic of your laugh when you get tickled about something, the joy of a sweet conversation with you, your big blue eyes widening with the intensity of your words -- the imprint that you have made on our lives is the kind of imprint that dreams are made of.

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I have watched you learn to breathe, eat, sit up, roll over, walk, talk, jump, and do all manner of things for yourself. I have watched you learn to feed yourself, drink your own water, and mix up a chocolate cake as mommy's big helper.

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I have watched you slowly and unforgettably fix the broken thing inside of me. You have taught me how to love... how to accept... how to simply be.

You have taught me the value of all life. You have shown me the worth and beauty and personhood that is waiting, hiding under a diagnosis for someone to simply take the time to see it.

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I am so grateful for you. I was right -- I didn't deserve a child with Down syndrome. Having you in my life is far better than I deserve. It is a gift far beyond my wildest dreams.

This morning I watched you jump on my bed. You were laughing, your feet were lifting off the bed's surface, and you were clearly having a great time. This morning you dressed yourself, pulling your shirt on with confidence and then tackling the tights. This morning you fed yourself cereal from a bowl. You didn't spill a drop as you guided your spoon to your mouth. This morning you built a tall tower with blocks, which you informed me was a place for "shopping" and then "shopping ice cream cone." This morning you hugged your brothers and you pushed your brothers and you ran alongside your brothers to the next area of mischief.

I watched you living the life of a happy 5-year-old little girl.

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You are learning your letters and numbers at school. You can already recognize some words! You can follow instructions (when you choose to do so). You pick out super cute matching outfits. You can communicate with us through words all the things you need and want. You can color and paint like a pro, and you are sooo close to being potty trained. But even though you have proven to us over and over again how smart and capable you are... that isn't why I love you. Your accomplishments are amazing, and I am so proud of you. But you don't need to achieve to be loved. I love you for simply being... you.

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I will always remember five years ago and how you stared at us, silently begging us to please, please give you a chance. Never before have we made a more important choice.

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I wish I could have known the things that I know now as I bent over your NICU bed five years ago today. I wish I could have seen into the future for just a moment and glimpsed what an amazing life you had ahead.

Thank you for choosing me to be your mommy.

Happy birthday, baby girl. We are looking forward to many more years with you. Or as you would say,

"HAPPY DAY!!! ICE CREAM CONE!"

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To read more about coping with surprises in motherhood, check out my new novel, Motherhood Unexpected.

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