In some ways, I think the almost 4 months we had to wait for scientific confirmation was this grief period, in spite of the inevitable moments where I still break down with sadness. And yes, they come daily. They usually come when I'm alone with my thoughts- everything from what science says she will never be able to do (sometimes they are 'stupid' things like driving a car or hanging from monkey bars or snorkeling or kicking a soccer ball, followed by the bigger heartbreak of possibly never walking or never falling in love or never being on her own or dying) to the things our family might miss. Sometimes they happen when I'm stopped at a light and the car next to me has a mom interacting with her child, or a billboard with a little girl or when my good intentions of research go off on a tangent reading personal stories instead of study results or when having to answer her medical questionnaires or apply for services for her.
And I hate that these breakdowns come.
I hate that they come because it reminds me of the sadness that consumed me as a kid. The sadness that I thought I escaped 20 years ago thanks to that Psychology class and 4 others some 336 miles away from everything I loved. I put on my big girl panties and ran away from that previous monster.
My alcoholic stepfather was a very unhappy man. Unhappy with his job. Unhappy with his blood family. Unhappy with his home. Unhappy with his hobbies. Unhappy with his wife. Unhappy she was Cuban. Unhappy with his cars. Unhappy with his boats. Unhappy with his many vacations.
So unhappy that he thought it was cool to call a little kid names.
For so many years, despite not having one on my birth certificate, I thought my middle name was 'cunt.' That was his nickname for me. And I was miserable. But I was scared of him too. I felt so helpless. And so I adapted by acting out and was consequently put on Ritalin. Then it was difficult to act out because the meds made feel like a zombie- all I could do was to sit there, taking as much as I could until tears came out on their own, despite how hard I tried to stop them from coming out. Then I tried to tell people- my mom, my family, my friends, my teachers, and although many had been present for his rants, no one ever did anything. I remember him telling my first boyfriend (sophomore in high school), in front my family, at a party in our home that I was "a little Cuban slut." And I felt even more helpless. And in hindsight, I know was in a stage of depression my entire childhood. And I know that environment is more influential than nature because I learned to react to negativity with a big "FUCK YOU, DICK," thanks to that stepfather. Every morning I woke up hoping that it would be the day that he would just POOF! Disappear. But I also woke up thinking that I was still there. He hadn't defeated me. Try as he might, and although he did break me down, I was still there. And that feeling was always stronger. And I put on my big girl panties. Threw out the effing Ritalin. And got the hell out of dodge.
And while I did run away, on my own, far away from the dickhead stepfather and everyone I thought had abandoned me by keeping me exposed to him for so long, I learned about hope. I made new friends. I renewed lost friendships. I learned I wasn't a"stupid Cuban cunt" who would "end up on welfare married to a worthless spick or nigger." It took me a while to lose the "FUCK YOU" attitude towards every negative thing or criticism, but I did, because I learned about hope and life and how they go hand-in-hand. And I realized that I knew about hope all along and it empowered me. Made me more self-centered than I liked, but empowered me none-the-less because growing up the sun always came up.
And that's why this new monster will NOT get the best of me, or Bea.
As long as there is life, there is hope. As long as there is hope, there is life.
And ironically, that hope comes from throwing out a huge "FUCK YOU!!!!!" to science. 20 years ago, I was a different person than the one I am today thanks to the things time, trust, and technology have afforded me. And so is Rett syndrome.
20 years ago Rett girls and their families had little hope because of a lack of information and experience, and yet the sun still came up. They've come so far in terms of understanding our girls, accepting our girls, therapies for girls, and the cure for our girls since then. 20 years ago, a cure wasn't even a thought and now it's a clinical trial!
And it's that same hope which keeps those daily sad spells at bay. If the Rett parents before me had accepted science's lack of knowledge and let it kill their hope, Bea wouldn't be where she is. And so I fight that sadness with the same "FUCK YOU!!!" attitude too.
I don't believe she will never walk unassisted. I don't believe she will never dive into a pool and swim around on her own. I don't believe she will never give a speech, or multiple ones. I don't believe she will never jump over a hurdle. On the contrary, I know she's going to sail over them just like I did and continue to do so long after I'm gone.
She is here because I had hope. And I have hope because she is here.