a poem written two days post diagnosis.

rett syndrome 

we met on an evening in january of this year. my heavy heart, searching for answers. i laid in bed, emotionally defeated. swollen eyes, concentrated on the screen, hoping to make some kind of connection.  as i desperately tried to understand the regression in my girl, i came across your name. the minute i got to know a little bit about you, i sat up quickly, as some kind of internal alarm started sounding off and the outside world suddenly froze. realizing how familiar i was with a total stranger, i wanted to learn more about you. but as soon as i did, i had to abruptly stop. i knew that i didn’t want to know any more or have anything to do with you. but somehow, in our brief encounter, you managed to hijack my hope and sent my spirit into a spiraling darkness. 

and here you are. as of wednesday morning, during a global pandemic, you decided to no longer hide behind your deceptive disguise. what calculated timing. crashing into our home to claim it as yours. knowing we wouldn’t be able to escape the wreckage. the trauma. the dust of our dreams, still hovering thickly around us. you are no longer denying that you have been stealing from our baby: her skills, invading her development and wrecking her nervous system. i’m begging you to erase this pain like you have erased parts of her memory but instead, you’re threatening to only make it worse. what kind of monster are you?

rett syndrome. it has been you all along. giving us subtle clues since day two, but cowardly hiding nearby when you felt my suspicions growing stronger. tricking us into thinking we had a healthy baby girl. did you enjoy the battle you created in my head, every moment of everyday? where i teeter tottered back and forth between intuition and illusion? it was you making me feel like we didn’t belong in world for the typical or the atypical. it was you making me analyze her every move. it was you, that robbed time and attention away from eliana and luca. it has been you inflicting pain and so much distance in our marriage. the nights that i searched for answers, sobbed and begged for michael to help but he didn’t want to hear it. he didn’t want to believe it. he convinced me to doubt myself. his unwillingness to see what i saw felt like betrayal and filled me with hope at the same time. i prayed he was right and tried so hard to see it differently. you were there during all the appointments, sitting quietly in the room. blending in so you wouldn’t be seen. i could always feel your presence, though. you had everyone fooled, but that time is now over.

now i know exactly who you are. and so does everyone else. now that you showed up making a bold name for yourself on a test result, people are showing up to meet you. only now can they understand the rare challenges you have progressively thrown our way. but gemma has not instantly changed because you bounded your name to her a couple of days ago. you have had an unfair advantage in this fight so far, strategizing ways to keep me alone in this struggle. you have showed me your unique power but you have also shown me mine. i will rise from this and so will she. i will find ways to outsmart your every move. you may have altered our journey but i refuse to surrender my girl to you. you will not just show up and take her. i will face you every single day, and when the anger settles, i will meet you with compassion, gratitude and peace. because i know that all darkness can transform into light.

i am now taking back my hope.  i will turn this pain into beauty. and i will give gemma a life as bright as her soul and as colorful as a rainbow.