Dear Diagnosis Day self:
I know it wasn't really official diagnosis day, but it's when you knew. When they handed her to you and you looked at her eyes and you started to say "Does she...?" And you stopped yourself. Because just barely 3 minutes after they said "It's a girl!" and your heart soared, you looked into her beautiful eyes and your stomach dropped. That was the day your life changed forever.
I know you feel incredible sadness and incredible shame *because* you feel that sadness. I am happy to say that almost all of that sadness is gone more than 2 and a half years later - in fact it pretty much only reappears when I think of you, having to experience such pain when you expected such happiness.. But I am so happy to say, it has been replaced with the blinding burst of light and neverending geyser of joy that is your daughter.
I know you are Googling like you're a New York Times researcher right now. It's your nature, I get it. The information is valuable and being prepared will help to ease your mind in the coming days and weeks, so keep at it. But don't dismiss other people when you come across blogs and websites where they say their child with Down syndrome is the best thing that ever happened to them. Don't disbelieve that mom who says she loves her son as he is. Or that dad who says he is proud of his daughter every day. Don't think they're delusional or they're overcompensating. You're still not ready to believe it, but a child with Down syndrome is not less than or broken - she is more alike than different. Soon enough you will know exactly what that means and you will be one of those parents, championing and advocating for not only your daughter, but for thousands like her.
Speaking of Miss Francesca...I don't even have the words to tell you how gorgeous she is. She is love and light and starshine personified. Her temper is fierce, but her laughter is musical. She is infinitely curious, sharp and quick, with a drive that will surprise you again and again. As she grows you will find that old saying that every child has his or her own strengths and weaknesses is completely true. Right now you think yes, that will be true within the confines of her diagnosis. But sometime soon, you will stare in disbelief as she eats with a fork better than her 7 year old brother, or stacks rings better than some of her typical peers, or gets up over and over again when others around her have no energy left!
And you...you will learn such valuable lessons that you didn't even know you lacked. You will be more patient, more kind, less judgmental. You will find a voice to advocate and educate and a new understanding of disability. And perhaps most importantly, you will learn to live in the moment. To appreciate each day, not dwelling on the past or anticipating the future.
I know you will cry so many tears for that baby, I wish you didn't have to. But, I promise, you will come out the other end a better, stronger person with a perfect little sidekick who is every inch the little girl you always dreamed of.
Bio: Farah Lyner is mom to 8 year old Tristan and 2.5 year old Francesca. They live in New York City. You can read more of their story at www.eyeslikesapphires.com
This letter is part of DSDN's October Down Syndrome Awareness Month campaign. We asked our members to write a letter to themselves during the time they received the diagnosis. Do you know a parent with a child under the age of 4 who needs connections and support? Let DSDN help and get started here.