A Letter

Dear Sanfilippo Syndrome,

I’m taking the time to write this letter to you, because frankly, it’s time that I let you know how I really feel.

It’s been 5 years, 8 months and 11 days since we’ve found out about you.  That’s 2080 days we’ve known your name.  I’ve been quite content not to address you, but now it’s my turn to face you.

I’d like to know how it feels to know that you have stolen many of our dreams.  How does it feel to

know that you have slowly over time, robbed our daughter of every chance at a normal childhood.  How does it feel to know that you are a murderer?  Are you proud of the many tears that you have caused us to shed?  Is your plan to darken all of our days?  Do you laugh at the thought of the fear that you bring?  Do you exist to defeat?

When we were first told about you, you answered these questions for me.  In fact, it was clearly stated in that tri-fold brochure that we were handed just how ugly you were going to be.  That your life altering, quiet presence would tip-toe in our daughter’s body and ever so slowly start to show your ugly face.  In these 2080 days, you’ve taken her voice; that sweet voice that once said “I love you” to her mom and dad.  That voice that was able to call her baby sister by name.  “Ninley” she called her sister, Finley.  That voice that

loved to sing “Jesus loves me,” and “happy birthday.”  In 2080 days, your presence in her body has caused her to seize, caused her to have a feeding tube, and you are slowly taking her ability to walk and run.  I had dreams for our Livia Grace.  I dreamed of one day watching her walk down the aisle in my wedding gown.  Now, because of you, I have to think about cutting the threads of my beloved gown to make her funeral dress.

I have every reason to hate you.  To scream how horrible and unfair you are.  How I wish I never knew you.  It would be so easy for you to consume every ounce of every minute of every last breath I have.  I’m sure your plan was to defeat us.  I could use everything I had to curse your name.  To spend the rest of my life bitter, angry, and consumed with the thought of you.

But I won’t.

I don’t have time for you.

That evil, ugly plan that was laid out before us in that tri-fold; we aren’t allowing it to prevail over our family.

You see, your plan has back-fired.  Your presence, although un-welcome, has changed everything.  You’ve changed our hearts, our eyes, our priorities, and most of all our village of support.  Not only do we love more fiercely, appreciate more greatly, but we know the importance of taking care of one another.  You’ve brought people into our life that has decided to walk alongside us through this
journey.  A community of people that are inspired by an 8 year old girl; a child who has brought even the strongest men to drop to their knees and embrace her.

Sanfillipo Syndrome, unfortunately, you will always be a part of our world.  You will be included in our vocabulary, but you will not be included in how we love, how we LIV, and how we cherish every day.  You see, good really does prevail over evil.  Every part of you is evil, but every part of our daughter’s life is good.  Her inability to verbally speak into our hearts trumps the way her eyes look into our souls.  Her complete dependence on us as her parents to keep her fed, keep her clean, keep her safe has given us a new appreciation on how lucky we are to simply wash our own hands.  The ugliness you bring in the night when she fights to sleep only deepens our gratitude to wake with the opportunity of a new day.  The smiles and laughter that you are stealing make us celebrate as if we’ve won the lottery when a smile or laugh shows up.  Sanfilippo, you are life stealing, but you’ve given us a new life.  One in which we will never give up the hope that a miracle will save our baby girl, but one in which we LIV for the promise of heaven.