An Open Letter to my Daughter with Down Syndrome

Dear sweet Hannah Grace,

My beautiful daughter, my life-changer, my literal gift from God.

I want you to know some things about yourself that others may not know. I want to tell you how you’ve impacted not only mine, but so many lives around this whole big world. I want to tell you about the special way your Creator knitted you together. I know you’re only 3 years old at the time I write this, but when you’re older you will understand just how amazing you really are. One day I may not be here to tell you how proud I am of you. So I’ll write it down and put it in a book for you to read when you’re older so you never forget how special you are. I want to tell you…your story.

I want to tell you how you’ve impacted not only mine, but so many lives around this whole big world.

I want to start by telling you about the day you were born. We came all the way from Maui, HI back to TN so we could be around family. The big day came and I was so excited to meet you! I had you all natural, so yeah, ouch! Nothing in this world could’ve prepared me for the moment they laid you on my chest. I knew that I loved you already, but when I saw you look at me with those almond shaped eyes… I knew. 

It’s as if you said, ‘Mommy, it’s me, your baby. I hope you love me. I’m the heartbeat you heard that you were so excited about. I’m the same baby who curled up safely inside you. I’m the same one who fell asleep to your heartbeat lullaby. I heard you sing to me in my cozy darkened world. You told me you loved me so much. I will change your life if you will accept mine. I am fearfully and wonderfully made. I am different, but that’s ok Mommy, that’s how God wanted me. I will do amazing things if given the chance. I will make you smile everyday. God made me especially for you. He said you needed me, and I am all yours now.’ 

Yes my gorgeous girl, I knew you were an angel. You see, when Jesus made you, he gave you something very rare. It’s a gift to this world though some may not realize it. And the people who choose to see what a beautiful gift you are know for certain they have been touched by something bigger than themselves, and they will never be the same after seeing your heart.

The people who choose to see what a beautiful gift you are know for certain they have been touched by something bigger than themselves, and they will never be the same after seeing your heart.

This gift is called Trisomy 21. God gave you one extra copy of your 21st chromosome. I don’t know how he packed so much love in that tiny microscopic chromosome, but he did. He’s just God like that. He wanted you to stand out, to teach, to love, and to show others to love unconditionally. He made you on purpose and for a purpose. However, every story seems to have some sad parts in it and ours is no exception. All parts of your story are necessary to tell so that you can truly see just how bright you shine. It’s only in the darkest of rooms that you can see how brightly a candle can glow. 

You were diagnosed with 3 holes in your tiny heart and possible Leukemia within hours after your birth. I was devastated and terrified I would lose you. They said that without open heart surgery you wouldn’t make it to age 3 (which by the way you never had to have because Jesus healed you right up).  I was like a zombie during our stay in the NICU.

Your Daddy did not understand your special gift and the difference it made in you. Sometimes people are afraid of what they don’t understand, and unfortunately, he was one of those people. He did not understand how to love with his heart, but instead, he only looked with his eyes.

Your Daddy…missed out on what would’ve been the biggest blessing of his life. 

It was a scary time for us, back and forth to oncology and cardiologist appointments. I cried every visit. Your Aunt Anita was at every single one and kept me sane. You were hooked up like an appliance. We didn’t have a home, a car, or a job. We lived in a hotel for a bit and then with family for several months. I was on a government program that gave me vouchers for pre-selected foods we were ‘allowed’ to eat. I hid my tears from you so you wouldn’t see me cry. I wanted to be strong for you, I wanted to give you the life you deserved, and couch surfing wasn’t that life.

After much prayer, God sent me a job so that we could begin rebuilding the broken pieces of our lives. We rented a little old farm house. To most people it didn’t look like much, but to us, it was home. Our new beginning and chance for me to give you a future. Our furniture was donated by a church member and for months we slept on a used mattress on the floor. But Jesus took our mess and has turned it into a global message. He is using you to educate this world so that they too can learn to see with their hearts. Let me explain how you’ve done that.

We didn’t have a home…a car, or a job. We lived in a hotel for a bit and then with family for several months…But Jesus took our mess and has turned it into a global message.

I took SO MANY pictures of you with my iphone…SO MANY. Those pictures would go viral on social media. I was quite addicted to your beauty and photographed you ALL. THE. TIME. The employer who hired me just happened to be a pro videographer (funny how God works huh?). He saw those pictures and said to me, “You have a gift, you need to go buy a real camera.” I laughed like he was crazy because your Mama is horrible with electronics. So after months of laughing at the idea, I finally bought a camera. I was so lost with all the buttons and lights, if it would’ve been a plane, I would’ve crashed it.

I had this burning desire to make a difference in the perceptions society has on people who have different abilities. So I documented your tiny life with images.

But once I got the hang of it, there was no stopping me. I had this burning desire to make a difference in the perceptions society has on people who have different abilities. So I documented your tiny life with images. People all over the globe were catching wind of your beautiful heart and smile.

So what did I do? I prayed for a platform to raise awareness for the individuals in this world who needed their voices to be heard-many of which are non-verbal, so I asked myself and the Lord, “How do I do that”?  Well, I drank a lot of coffee one night, and wrote the words “Paperdolls Photography” down on a torn piece of paper and it’s like the floodgates of my mind opened and the Lord showed me exactly what I needed to do.

I opened my business in March of 2016. Less than a week after I released my first Collection called “American Beauty,” Nashville News Channel 5 was standing in our yard, and at only 2 years old, you had your very first Television debut. Talk about God opening doors?! I was getting calls and emails from Washington D.C., Australia, Brazil, Canada, and all over the USA from people wanting to know “Why?” “Why are you spotlighting individuals with special needs in your pictures?” they ask. So I happily obliged them.

I use photography as the platform to tell our story, raise awareness, and to UN-teach the negative connotations of society to prevent what happened to us from happening to others.

I use photography as the platform to tell our story, raise awareness, and to UN-teach the negative connotations of society to prevent what happened to us from happening to others-and all without saying a word. The images of you and your friends spoke loud and clear and was understood in every language around the globe impacting hearts and changing minds. You’ve got me and Jesus girl, there’s no better Daddy to have than Him. I will use the talent God has given me to continue to fight for you and all your friends around the world. And one day when I’m no longer here, I hope I will have left a mark on this planet. You have turned Paperdolls Photography into a global campaign and have gotten your many friends to join you.

You are not in this alone. You have become the sweetheart of the global community of individuals with special abilities by raising awareness every place your face is seen. At only 3 years old you had been on Television at least 3 times, not to mention your beautiful face being published throughout the world in various magazines, blogs, and other media. All of this by just being yourself.

You are not in this alone. You have become the sweetheart of the global community of individuals with special abilities by raising awareness every place your face is seen.

The impact you have on complete strangers astound me. People have written me regarding how you changed their lives and gave them new perspective on people as a whole. Do you see how proud I am of you Hannah Grace? Can you see? Is it clear that you are a gift? Do you realize how loved you are?

People have stopped us in grocery stores and begin to cry with the only exchange of words being “She is so beautiful.” I would reply “Thank you, are you okay?” They would just nod and walk away. That’s some superpower you have my child. Perhaps you reminded them of the son they aborted out of fear of a different ability or the daughter they gave up because of what they read on the internet.

I will close with this, but your story is far from over. This is how amazing you are, and don’t ever forget these words from your Mama. YOU. ARE. ROYALTY. You are the daughter of the King of Kings and Lord of Lords and that my darling, makes you a Princess. You are beautiful. You are an opportunity. You are capable, and can do all things through Christ who gives you strength. You are a blessing. You are rare. You are a celebration. You are fearfully and wonderfully made! You are the eighth world wonder. You are my daughter. You are a part of me, and I would never ever want you any other way.

You will continue to change this world one heart at a time and I’m right by your side helping you one stunning portrait at a time. We can speak with no words at all with photography because images can be understood in every language, and the love shining through them says it all.

You are a world-changer, a teacher, a never-ending supply of love.

You are above and beyond the daughter I dreamed of and prayed for. Thank you for loving me despite my many failures. Most days I don’t feel worthy to be your Mama. You are a world-changer, a teacher, a never-ending supply of pure love. You are good, pure, and all things innocent. You are inspiring and loved by thousands. Out of all the world stories, both the old and the new, my favorite of all is…The Story of YOU.

With everlasting love,

Your Mom, Stephanie Mullowney

Stephanie Mullowney is a talented photographer, owner of Paperdolls Photography, and proud single-mother to beautiful Hannah Grace. Follow along on his journey on Facebook and Instagram.

#ExtraordinaryHuman | This piece was republished as a part of our Extraordinary Human campaign by Voices for the Voiceless. Join the movement on Instagram and Facebook. Happy World Down Syndrome Day!

Voices for the Voiceless is a Phoenix-based pro-life nonprofit advocating for the dignity and worth of every human being and creating a world where no one faces unplanned pregnancy alone. Every day, we work to mobilize communities of support around women in unplanned pregnancies and change hearts and minds about abortion.