09/15/2014 12:59 pm ET Updated Dec 06, 2017

Dear (Not So Dear) Tuberous Sclerosis

Heather Lens

Dear (Not So Dear) Tuberous Sclerosis,

I despise you.

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

I have never been faced with a problem that 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 a 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 myself 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. We will not be defeated by you. We will not give you that power. We will fight for our daughter and the thousands of others who have been attacked by you.

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.


The Lens Family