A Message for My Daughter's Tuberous Sclerosis

Dear (not so dear) Tuberous Sclerosis,

I despise you.

You’ve brought pain to my family since the day your name was so gravely spoken. Your “incurable” tagline ripped through my heart like a million razor blades, tearing it to shreds. You’ve made me doubt myself and my ability to care for my own daughter. Your dooming prognosis made me want to run far away. I still feel ashamed when I think of those fleeting thoughts.

I’ve never been faced with a problem I couldn’t fix or at least attempt to fix. You, however, are a different creature. I can’t fix you or your damaging effects that have taken home within my daughter’s innocent body.

As I lay my body on my daughter, attempting to restrain her for an EEG, I feel nothing but hate for you. As each tear falls from her face, I carry more and more anger. Within those moments you make me want to give up. I want to throw my hands in the air and wave the white flag, surrendering ourselves to your overpowering existence.

But then my daughter, who has been your prey, shows her amazing strength and cracks a smile. All of a sudden the anger, pain and grief leave the room. You can attack her from all sides, and she still has the ability to show her strength. She is stronger than you. Which makes me stronger than you. Her smile returns my strength and makes me once again renewed and ready to tackle whatever you throw our way.

You will not defeat us. We will not give you that power. We will fight for our daughter and the thousands of others who you’ve attacked.

You may be a part of our life, but we refuse to be defined by you.

You are messing with the wrong family. We won’t go down without a fight.

Sincerely,
The Lens Family

For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to community@themighty.com. Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.