To My Daughter With Smith-Magenis Syndrome on Your 10th Birthday

My daughter, Sienna, was diagnosed with Smith-Magenis syndrome (SMS) when she was 4 weeks old and just days after undergoing open-heart surgery to save her life. As I searched for more information about this rare chromosomal abnormality, I came across a lengthy list of characteristics associated with it, including global developmental delay, cognitive delay, sleep disorder, self-injurious behavior, aggression and attention-seeking behaviors.

I wrestled daily with the fears I had for my daughter’s future during those first few years of her life. Smith-Magenis syndrome is a lifelong disorder that has no cure and can be an extremely difficult syndrome to manage.

However, nothing I ever read about SMS told me anything about who my daughter is, who she would become or what a privilege it would be to be a part of her life, which inspired me to write this letter to her for her 10th birthday:

Dear Sienna,

As we close out the first decade of your life, I can’t help but feel so many mixed emotions about hitting this milestone. It’s a birthday I have both feared and hoped for. As always when it comes to you, I’m overcome by a web of paradoxes. But with all of these conflicting feelings, I also have a sense of clarity about our life together, and there are some things I need you to know and some promises I need to make to you.

I’m sorry.

I have made many mistakes, and I’m certain I will make more. They began at the time of your diagnosis. I’m sorry I paid more attention to the label you were given than I did to you. I’m sorry I allowed myself to believe that life would be anything but wonderful simply because you came with a list of genetic predispositions. I’m sorry I was sad more than I was happy during that time. I have so many regrets, my darling girl. I wish I could relive those days and tell you, and myself, that it really is going to be OK and the joy you would bring to our family would surpass any heartache we ever felt.

Thank you.

For letting me learn as I go. For accepting me as the imperfect mother that I am. For giving me the chance to start fresh everyday. For teaching me how to be more sensitive and for showing me what it means to love unconditionally. I see the world through your eyes now, and I have such a deeper understanding of all that is important. And with this new perspective, I’ve been able to trim out all that is insignificant. You’ve added a richness and a depth to my life I know I would never have discovered without you.

I’m so proud of you.

You’ve fought for your place in this world since your very first breath. You’ve overcome the insurmountable. You love freely and you enjoy your life in spite of all of the challenges you face. You judge no one and are a friend to all. Your heart is good and pure. You work so hard to do what comes so easily to others. You bring joy to the people with whom you come in contact, even total strangers. You have exceeded every expectation I’ve ever had of you. You’re my hero. I can say with overwhelming peace and confidence today that I don’t need you to be anyone else but you.

I’m ready for whatever’s next.

These last 10 years have taught me we can handle whatever comes our way. I have no idea what the future holds, and I have grown tired of trying to predict it, especially since most of my predictions have turned out wrong. I’m done with being fearful of every new stage in life, every new behavior and every what-if that crosses my mind. I’m committed to staying present with you. You lead the way, and I will follow your cue. And when challenges arise, we’ll face them together. I will always be at your side.

I love you.

More and more with each passing year. Always and forever. My precious angel. My beautiful daughter. My love.

Follow this journey on SMS Research Foundation. 

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