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.


  1. There are no words to describe you except...exceptional. You are and will be the ultimate mom i see you as, now more so than ever, I think that is why God has given you this gift, Bea. Without a doubt will be looking forward to all the advances and milestones she'll be making. I extend my friendship to you is a stone to hold onto. Whatever happens on this path i am there if you need me. Johanna

  2. She is the "bringer of joy." Hence, her ability to put a smile on our faces is inevitable.


A wise friend once told me that the key to happiness was to 'Say what you mean and mean what you say'.