Sunday, December 15, 2013

All I Can Bea

I only took one psychology class in college that was literally 20 years ago this semester. About the only thing I remember from that class was that it was in a huge auditorium with more students in that one class than what twice my entire high school's population would have been. So I don't know which stage of grief I'm in, or supposed to be in, or whether I'm in denial, or have accepted the monster that is Rett syndrome...all the crazy shit that floods my inbox and my Facebook feed these days. Actually, since July 10th.

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.

Thursday, November 21, 2013

The Face of Rett Syndrome as I Know It.


From a book I swear I'll write someday and title "The Ramblings of a Rett Mom on Bad Days"...


Bea loves the Little Mermaid. Loves hearing 'Part of Your World.' Watches it twice a day- even relaxes and participates more when played in the background by her therapists during her therapy sessions.

Every time I hear Ursula and watch the part where she takes Ariel's voice, I imagine Ursula as the face of Rett.

And I can't wait to drive a ship through her gut!

Tuesday, July 23, 2013

The Hardest Pill

Regardless of the successes, I've never had faith in my abilities. My parenting skills top the list of things I doubt on a regular basis. And this next challenge is going to be no different.

It's been almost a year since we started along the path to get to the root of Bea's delays and regressions. Doctors and specialists alike have suggested and tested for a gazillion things trying to figure out why she stopped saying "Daddy" and every other word she'd learned other than "Mama," which is now just a short "Ma." No one could figure out why the muscles in her lower extremities didn't seem to want to wake up. We've heard and seen many scary things along the journey: autism, cerebral palsy, Angelman Syndrome, EEG, MRI, blood, metabolic, enzyme, protein, allergy, megacolon, crazy terms with letters and numbers ala 'Artist formerly known as Prince,' in addition to Bea's daily events like painful screams with every bowel movement, and skin rashes diagnosed as Eczema so severe it resisted 18 months worth of 4 different steroid creams- which disappeared once we changed her to a GFCF + dairy free diet, but I digress. At every turn, every crazy test, we received extremely bittersweet results. Every doctor gave us the news that every parent prays for: "she's perfect," despite her obvious physical impairments. I could go on but the truth is that I remember only the main events, understand even less, and am terrified by what her geneticist thinks she has; it's the scariest thing I've ever heard. And the more I research it, the scarier it becomes because it not only describes her to a tee giving us that "what" we've been searching for, but it's given us insight as to what she actually feels and what we can expect. And yup, it's scary. And I had to stop researching for a good week because EVERYTHING I read made me bawl. And the knot in my throat is choking me. It's worse than what having the most severe case of cotton-mouth in the middle of the Sahara Desert and then drinking a keg of sand must feel like. And while the official diagnosis won't be stamped anywhere until the next round of test results are in sometime in September, none of the professionals disagree this time.

Like Nick and Viv, Bea is special. Turns out, she's really, REALLY special. There are very few little girls in the world like Bea; few enough to classify her condition as rare. Bea has something called Rett Syndrome.

It's a rare, spontaneous, genetic mutation- no cause, just random luck, like winning the lottery....but like everything else that I do, ass-backwards.

She's supposed to forget how to use her hands, walk, and speak. Except her brain won't forget. Her body just won't react. She'll be trapped in a body that doesn't work.

And she'll understand it all.

Punch me in the gut some more. The fat rolls can take it. My heart is another story.

That I will have to stand up for her is no different than what I will do for Nick or Viv in their lives. That I will have to be her voice is no different than what I will do for Nick or Viv in their lives. That Nick and Viv will do it for her, will probably be no different than if Rett Syndrome does not rob her of those abilities. She is still our little Bea. Besides, it's my job to help her stand up for herself and find her voice. It's what I'm supposed to do, regardless.

I've ignored a few friends with good intentions, and I want you to know a) that I know how awkward it must be simply trying to approach me, whether it be to console or with your great news and events given this slap in the face, but don't stop. Please. I need to hear about milestones, art work and rough + tumble adventures. I'll still share Nick's, Viv's AND Bea's accomplishments, in addition to reveling at yours. I'm still me. b) I am still me. I still crawl in my shell and come out when I'm ready. This is my "talking," my therapy....when I'm ready. I'm trying to take it one day at a time, because truthfully, I don't fret over 'the rest of' Nick's or Viv's lives...so why do it with Bea? I have to stay in today, because it's her body that's not going to work; her eyes, ears and brain are just fine, and they'll process my shit-faced days just the same as Nick and Viv will. And what good will that do? How fucking corta-me-las-venas depressing for them. So I'm trying. Some days are easier than others. And I refuse to allow grief to take over or cloud my judgement. And I refuse to let grief or fear rob me of a single happy moment. 

The only silver lining of stupid Rett's, is that one of the symptoms is uncontrollable fits of.... LAUGHTER. It is among the many symptoms she already has.  

Truthfully, as far as rare diseases go, it's difficult to have anything other than hope with Rett Syndrome. I suppose that's why that knot in my throat is so big- to keep me from accepting any part of Rett's. There is no cure for Bea-YET, though symptoms have been reversed in mice- cancer and AIDS haven't, so a cure is just around the corner! Plus hearing her laughter all the time is that swift kick in the ass I need to remind me that she can do this.

And that's all I need to remind me that I can too.