Wednesday, June 10, 2015

A Day in the Life of a Handicap Placard Holder

My 4 year old daughter weighs almost 30 pounds. She is not ambulatory, meaning she cannot walk unassisted. She has Rett syndrome, an irreversible neurological condition which doesn’t let her control her muscles. She wears orthotics (articulated AFOs) which weigh her down and restrict certain movements, but offer tactile input and improve stability. She often uses a walker- equipment which is not suited to her for multiple reasons. Her walker weighs 10 pounds; does not turn; and she is not strong enough to lift it and move it, or push it for more than 5 feet without assistance. Despite the mismatch, we force her to use this walker because it’s the only time she can control her hands. One of the stereotypical features of Rett syndrome is uncontrollable hand-wringing. For her, the hand-wringing is non-stop clapping, except when using this walker. Because Rett syndrome is degenerative and eventually robs girls of all functional hand use, we force her to use the walker in an attempt to prolong the inevitable: total loss of hand control, atrophied muscles and contorted hands.

Rett syndrome has also stolen her voice. So in addition to not being able to get herself around, she can’t even ask/tell/speak her needs/dislikes/pains to us. In order to communicate with us, she uses a speech-generating device which she controls using eye-gaze technology (infra-red cameras which track the reflection of light off her retinas). The device itself, a Tobii I-12 weighs a little over 6 pounds, while the stand + keyboard + mouse + cables add another 5. This brings the total weight of her equipment to over 20 pounds, or 2/3s of her body weight.

Getting her out of a car is a process. There is nothing quick or convenient about it! I always grab the Tobii and it’s accessories first since they’re the easiest to grab (in a backpack that I wear). Since she cannot control her body, her joints (elbows and knees specifically) often lock and I have to physically bend them myself, being careful to not break any bones (Rett also causes malabsorption of vitamins and calcium deficiencies) just trying to free her from her seat’s straps. She usually goes stiff as a board when trying to get her out of her car seat. She also recently developed seizures which are occurring when I wake her from sleep in her car seat. When the seizures happen, I stand outside of the car at her side, massaging her/wiping her tears/cleaning her drool/squeezing her limbs/holding her head upright and reassuring her that “everything will be OK” until the seizure is over and she recuperates. Sometimes it’s less than a minute; sometimes more than 5, but ALWAYS terrifying. Once I’ve managed to get her out, then I carry her to my trunk where I get her walker out. Then I stand her at her walker, grab my purse, and begin to pull her walker using a ghetto-rigged handle. This is usually done in a parking lot thoroughfare vs a disabled loading zone. And I do this despite having completed the even more arduous process of obtaining a disabled parking placard...for my 4 yr old.

Why would I endanger her, or myself, like that when it’s clearly not an easy, quick, or fun process?

Because there are inconsiderate people (see: assholes) everywhere who leave me no other choice. People who are not differently-abled, but rather lazy or late. People who have no issue endangering the life of a 4 yr old or a mother of three. People who like to say, “I’ll only be a moment,” or “I’m just getting something quickly.” And those are the polite ones. If I had a dollar for every person who has retorted with profanity, I could have a helicopter. I will never understand why innocent children suffer from Rett syndrome while others waste the blessings of mobility.

I would trade my life to change my daughter’s condition. Actually, I already have. I spend every moment fighting Rett syndrome alongside her. What’s not spent caring for her, or watching helplessly as she struggles in pain just to poop, is spent researching foods/medicines/exercises/toys/activities to better her quality of life. My day is spent shuttling her and her siblings all over town. I racked up 24,000 miles on my car since purchasing it in May of 2014. In order to fit all of her daily therapies and her siblings typical activities, our daily schedule doesn’t allow for mAny interruptions….like say someone blocking us into a handicapped space because he/she “was only going to be a minute.” That moment that was too significant for he/she to inconvenience themselves with WALKING but not significant enough to prevent him/her from inconveniencing someone else has ramifications- life and death ramifications. MANY of her specialists have waiting lists that are months long. Being blocked in a space has caused my daughter to miss appointments because we arrived late. So now someone’s laziness endangered her health! Another thing I’ll never understand is why people feel entitled to behave towards others in ways that they themselves would flip a lid over if directed at them. You’d be surprised how many people think it’s OK to inconvenience someone by double-parking behind them, blocking them in a space, simply because the only available parking spots are too far for them to walk.

The frustration that comes along with that disregard for human life often makes my cup runneth over. Will the next time be the day my proverbial cup spilleth over? The overwhelming stress a special needs parents deals with every second has been equated to PTSD. You don’t mess with them, why mess with the disabled? And really, what kind of person disrespects the basic rights of a helpless human? Who died and made you entitled?

So if you want to park in that disabled spot, PLEASE take my daughter’s disabilities. You clearly think they’re no big deal. Or better yet, DO park there and run the risk of someone like me making you an asphalt-crusted pancake. The less assholes the better.

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 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.

Saturday, April 28, 2012

My Friend

17 years is a long time. So much can happen in 17 years.

I remember walking into that shelter as if it were yesterday. April 20th, 1995. I'll never forget that day.

I grew up with cats and had to leave my own behind when I left for college (something that still haunts me), so the moment I knew I was moving into a cat-friendly apartment, I went on the hunt for my special friend. I wasn't looking for just any cat, and boy did I see cats. I searched every pet store and shelter within a 3 county radius. She wasn't the first- or even the second kitten, I saw that day at the Marion County animal shelter. The first cage actually had two of the cutest kittens I've ever seen in my life, and both howled at me to open their cage, but I couldn't bear to break up a pair and leave a lone kitten behind; and so I moved along. The second cage had a litter of 5.

When I opened the cage door, four huddled in a corner while Chabot strutted up to the edge. She let out a little meow- something that would become one of her trademarks, and I was hooked. She was so cute, and LITTLE! She crawled all over my car for the 20 minute ride home. When I got home, I made her a makeshift bed (see: shoebox + blanket) and a makeshift litter box (see: shoebox lid with shredded newspapers). She had ample room in that bed and I remember her little green eyes looking at me that night before I turned off the lights to go to sleep. She meowed and CLAWED her way up the comforter and laid next to my head on the pillow. I gently picked her up and put her back in her bed. We repeated this process another two times before I just said, "fuck it," and let her sleep there. Her purring lulled me to sleep many a night. I let her sleep there until she no longer fit and moved to my side or the foot of the bed.

She did some of the coolest things. Everyone always said she was the coolest cat.

On the monthly trips home, she would spend the 4.5+ hour car ride between Gainesville and Miami walking around the car or sleeping on my lap. She would crawl around the back and people would see her and honk. It was hilarious. On her first ride to Miami, she crawled around so much that I wondered if she was looking for somewhere to take a shit. Almost as if I willed it, she popped up from the back, onto my lap, put her two paws on the window, and meowed. Because I am totally fluent in cat speak, I thought she was telling me she had to go; so, I pulled over. I held her tight as cars flew by us, and positioned her over some grass. Would you believe she actually peed?!?!?!? She did it every time she had to go to the bathroom...for years.

She would talk- clearly, after that bathroom story; but no, really talk. You would tell her, "Chabot: speak," and she would meow at you. It was her version of cat parlor tricks, I guess. My grandmother used to call her the social butterfly because she would just walk up to her in the hallway of our building, meow, rub her leg, and then continue.

She was a sly hunter too. While it is commonplace to get the token lizards, rats, and small birds, Chabot once brought me an armadillo. She brought an opossum too. She was also known to steal food from plates left unattended. I suppose that was the consequence of always feeding her tuna and table food.

She loved to play all sorts of games. Lord only knows how much money I spent on toys and quality cat nip. She loved to play "catch the thing under the comforter" where I just made jerky movements with my hands or feet under the comforter as she tried to pounce on it. She also loved to play under doors. You could stick an item under a door and she would try to grab it on the other side. She would stick her paws under trying to grab it. It was the cutest thing seeing these little paws sticking out from under the door. She would go n u t s with cat nip. Purring and rubbing and doing the crazy shit cats do when they're high. She would hide on top of the fridge and then jump on you when you walked by. She actually played this hide-and-go-seek game all over the place- under beds, around corners; it was awesome- except when I was running late for work and she ripped my stockings.

She loved laundry day- days. She had a penchant for jumping into laundry hampers full of clean clothes and piles of clean laundry atop the bed. She'd restregarse bien in all the clothing. Her long, white hairs all over everything didn't help her case. Oh, and let me not forget about drawers! She would crawl in drawers and sleep on the clothes. Chabot got me to do what my mom couldn't: to close drawers. In these last years, her favorite spot to sleep was the drawer underneath the crib where all the baby blankets are.

She'd always come running to the door- whether she was outside or in, when I arrived. She never ignored my call. She'd meow and rub herself up against my legs. I knew it was an excited hello, and I was always happy to see her too. I now wish I wouldn't have rushed through some of those moments as quickly as I did. She would stand in the window and I would tap the glass and play. It was hilarious when she would pop her head in the tub. I would be in the tub and she would just peer in from a corner...or when she would knock over all my shoes trying to find hiding spots. I miss so many things already.

I miss seeing her. She was the most beautiful calico, with the most gorgeous green eyes.

In 17 years, so much has happened. I've voted for four presidential candidates. I've traveled the world. I've had 5 cars. I've moved 6 times. I've mended a broken heart or two- always with her purring softly beside me. I've buried a grandparent. I've buried friends. I've had a few jobs. I've had countless hair colors. There have been 6709 sunsets. I've weathered 5 hurricanes. I had a benign tumor removed from my body. I've danced my ass off more times than I can count. I got married. I had three children. I lost one. I lost her.

So much has happened in 17 years, and yet it seems like such little time to have been able to spend with her.

I miss you so much, my friend. You are loved very much. I hope I did right by you. Thank you for choosing me that day. Just, thank you. I hope to see you again.

RIP Chabot Casanueva Rodriguez
4/20/1995 - 4/26/2012

Monday, November 14, 2011

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Tuesday, June 14, 2011


It's said that beauty is in the eye of the beholder. Well this rambunctious thing sure be-holdin' it!

She's also got daddy wrapped around her finger!!! Is it any wonder?