To My Hannah

Oh my baby girl.  This has been the longest week of my life, and I miss you terribly.  I think about you every day, many times a day.The saying, “Each child is a gift,” is one that I have heard so many times in my life.  It is because of you that this is so very true.  You are definitely one of the most amazing gifts in my life.   Your infectious smile  has melted my heart thousands of times.  Your sweet and playful charm has endeared you to everyone you have met.  Your fighting spirit and feisty personality made every day with you a wonderful adventure.

But the biggest gifts of all were the multitude of gifts you have given to me.

You taught me how to love on a level that very few get the opportunity to feel.  Even though you never could say the words “I love you,” I felt them unconditionally by your smiles, your expressions, and how you would caress my face when we would cuddle.   You knew I was your mommy, and the look on your face every time you would see me made me feel like the most important person in the world.

You taught me how to be a better mother, a fierce advocate, and a more compassionate person.  Before you, I would let fear, laziness, and insecurity stop me from going after certain things in my life.  But because of you, I was forced to face them head-on, and between the two of us, we were able to do some amazing things.  Things that I could have never imagined I could accomplish just a few years ago.   This is something that I will never let go of.

You have brought some wonderful people into our lives.  People whom I would have never met, people whom I lost contact with for many years, people who were always here.   You captivated hearts and drew out the truth in people.  These people are now front and center in our lives, many who have fought for you and shown as much love for you as if you were their own daughter.

You have given me a new purpose for being.  For years I have been trying to figure out what I am supposed to do in my life, what would truly make me happy.  I would dabble in certain things, but I never really felt that connection.  Until now.   You helped me find my calling, what I was meant to do in this world.

One of your biggest gifts, one of the reasons I believe that we were blessed to have you as our daughter, is the awe-inspiring changes you have made in the world.   What you have done in three short years, most people, including myself, could never do in a lifetime.  You have opened so many peoples eyes, from physicians to friends to strangers, and shown how important it is to fight for children like you, ones for whom today’s medical advances do not have a chance to save.

But now you can rest.  Your amazing work here is done.  You are now able to run, play, and be free to do everything and anything your heart desires.  No more restraints.  No more disabilities.

Your Daddy, Ethan, Abigail, and I, along with so many of your family, friends, and even strangers are going to continue this fight in your name.  Because of you, other families will be empowered to fight for their children.   Because of you, doctors will have more compassion and resources when working with children with rare diseases.  Because of you, communities will come together for reasons they never did before.

You have changed so many lives.  So many.  But most of all, you have completely changed my life, and for that I am so incredibly grateful.  I will always keep in my heart the times we played together, the times we snuggled, and all those times in between.   And it is all those things that I will miss most of all now that you are no longer here with me.

I have to keep reminding myself that even though we are so terribly heartbroken right now, you are now no longer in pain and no longer suffering.   It is not fair that the only way for you to be healed is for us to have to let you go.   But you are healed now.  You are at peace.

I will carry you in my heart every minute of every day for the rest of my life.

Fly, my beautiful ladybug, fly.