MELTDOWN MANIFESTO

OFF FACEBOOK UNTIL JANUARY 1.

I've had it. If I cannot post to my FB story a beautiful photograph of Joe Biden visiting his son's grave without someone using a laugh emoji and then accusing me of being a horrible mother who "worships a hair-sniffing pervert," then I think people are dealing with some serious, unbridled hate and need a serious, fuc*ing therapist.

The first few months after Donald Trump's election I behaved badly, I really did. I unfriended people, said some hurtful things to family members and so on. But ever since then I have treated those with opposing views with complete respect. I measure all of my words on FB so carefully that half the time I can't remember what I was trying to say to begin with. Even my elation yesterday was carefully worded so as to avoid offending people I care about — but the snark and biting remarks came anyway.

Never mind the fact that during the past four years I have consistently posted positive or thought-provoking updates about the President despite my personal dislike of him, such as his support for special education, his prison to work bills, his focus on reducing the cost of pharmaceuticals and more. I posted that it was morally wrong to rejoice in Rush Limbaugh's advanced cancer and shared the same message about the President’s COVID-19 diagnosis. I can honestly say I have not seen anyone else do the same across the fence or even on my side of the fence. My parents taught me that fair is fair, and I also believed — quite naively — that since I have 2,900+ FB contacts this might do some good to bridge the gap between those on opposite sides of the political spectrum. Instead, it opened me up to harsh criticism and the unpleasant task of refereeing food fights between Republicans and Democrats on my page.

Over the past five months I have busted my ass registering voters, helping people with election questions and making it easier for ALL eligible U.S. citizens to vote. To this I was asked by an extreme conservative if I'm registering illegal voters. Really? Instead of pointing out his jaw-dropping insult to my character, my response was "gosh, no, that would be impossible,” while I bit back more colorful responses.

Roughly six weeks ago I must have registered 30 Trump supporters at a voter registration event; I know this because they kept asking for Trump buttons and saying “Trump 2020!” after completing their registration forms. I smiled and told them to remember to vote. I also helped conservative Republican friends with voter information like how to handle absentee ballots for their college students, how to assist elderly parents with ballots at the NRG drop box, where they can vote if they're registered in another county and the freaking list goes on forever. And ever. And ever. Never ONCE did I make a disparaging remark because that is not who I am. I believe, and will always believe, that every eligible U.S. citizen has the right to vote.

Meanwhile, I spent countless hours in recent weeks dealing with voter suppression-related law suits and trying to figure out how to present the facts in media interviews without appearing partisan. But ya know what? It wasn't Democrats filing those last minute law suits trying to invalidate 127,000 legally cast ballots in Harris County or shutting down previously approved voting options. And ya know what else? Absentee ballots have been around since the Civil War and only this year are there newfound issues with voter fraud and election stealing. I honestly don't care if the President demands recounts or sues the whole world, he can do whatever he wants. I was prepared on Tuesday night to accept a Biden/Harris loss and was going to do so gracefully.

Yet here we are. Come at me with hate, come at me with judgement, come at me with no attempt to read, learn, share, discuss or understand. Make it easy for me to block your ass fast enough to make your head spin, which you probably would prefer since I'm one of those terrible people who worships a hair-sniffing pervert. Yes, I'm of the ilk who likes to riot, loot and shatter glass, I like to cheat and steal elections -- sure, that's all of us Dems -- and I'm going to throw our country into an unbearable, godless disaster all because I dislike a man I believe is divisive.

Yes, this is a "melt-down manifesto" after four years of being as kind, respectful and tolerant as I can be. Stick a fork in me, I'm done. This is my last post until after the holidays since I do not want to spend another night, in fact not another moment, being this hurt. Not another second in tears. If you need me, PM me. If you want to give me shit, save it for someone else. By January I’ll have created FB lists or removed half of my “friend” list altogether.

And one more thing: to any of you who have such hate in your hearts that you cannot bear to see a man visit his son's grave after being elected president without hurling insulting emojis and offensive comments -- unfriend me now. We will never connect on a level that matters, and I honestly don't need you in my life.

Hasta la vista.

PS: To the now-blocked woman who insinuated that my parenting is sub-par due to my politics, let it be known that our kids have grown up to be pretty freaking awesome. So yeah, bite me.

The Patriarch Papa

When great trees fall, 

Our Patriarch Papa, Phil Mudd

rocks on distant hills shudder,
lions hunker down
in tall grasses,
and even elephants
lumber after safety.

I didn’t know what to think of Phil Mudd when I met him in my 20s, or the huge family over which he presided, for that matter. All those siblings seated for hours around a dining room table, bouncing babies on their knees and recounting childhood stories of yore. The time Betsy was a baby and the older kids rolled her under a desk. The time my husband, Chris, mistakenly dyed his teeth green with a mouthful of Chicklets prior to a high school prom date. The time David (or was it Chris?) was told to soap the outside of a pot during a Boy Scout camping trip and soaped the inside instead, making everyone sick. On and on it would go, as I’d rearrange my stemware and take in the scene around me. No raised voices, everyone genuinely happy to be together. Phil, or Dad as we all called him, was clearly the patriarch of them all, grinning through the banter, listening closely and then offering the final analysis of what really happened.  His word was sacrosanct to his family but especially to my husband, making things challenging for a loud, opinionated Italian girl like myself. “What to think about this Patriarch Papa,” I thought to myself as I peered at him through a cloudy wine glass. How would I get along with this man.

A love that lasted 70 years

As George Bernard Shaw once said, youth is wasted on the young. Phil Mudd left this world in the early hours of Friday, July 10, at my sister-in-law Debbie’s home, with her by his side. The days preceding his passing were spent with family who went about in hushed whispers, warm embraces and prayer as the inevitable began to take hold. And when we received the call that it finally did, I thought of Shaw’s words as I considered how little the young woman I once was understood the true patriarch, the man who raised my husband.

When great trees fall in forests,
small things recoil into silence,
their senses 
eroded beyond fear.

But in all honesty, my impression back then was that Dad could be a bit of a pill. Having raised seven well-adjusted, happy human beings, he felt he knew a thing or two about parenting. He believed he knew a lot of things, in fact, and had no problem sharing that knowledge to my benefit. For example, “Children spell love T-I-M-E.” Leave me alone, I’d think, as I juggled a young family and work. “Blood is thicker than water, you know,” when I couldn’t make it to a Mudd gathering due to another commitment. I’d smile through clenched teeth, then hurry off to whatever important commitment was on my calendar. When I wept inconsolably and neglected to wash my hair back when our oldest daughter, Mackenzie, was diagnosed with a rare disease, he said “You know, you need to pull yourself together. Do it for your family.” I stewed on that one for weeks because, in my estimation, what the hell did he know anyway?

Dad holding court with family

In fact, I’d look around from season to season, year to year and wonder what was up with these Mudds, who rarely wallowed, set grievances (of which there were few) aside and refused to obsess over the negative, like Mackenzie not developing cognitively like her peers. I wanted someone to say something about that but all they did was welcome her, love her and include her in photos with four other girl cousins born the same year. “The girls of ’92!” they’d exclaim, as I’d shuffle that good ‘ol stemware around and wonder who I could poke with a fork. Once, obviously coming to her defense in his mind, Dad grumbled “Why don’t you leave that little girl alone,” when I told him how I, the ever-dutiful mother, shared six ways to Sunday about Mackenzie’s disorder to a dance teacher before enrolling her. The nerve of this man, I thought. “Never explain, never complain,” as the British say, but my own loud, Italian family was all about complaining, explaining, laughing, yelling, crying, screaming and then laughing again. This is how we rolled; it’s what I knew and preferred. I was about clutching my chest and shaking a fist to the heavens, and by God, no one was going to tell me otherwise.

Grandma, Grandpa and Minnie Mouse (Karenna)

When great souls die,

the air around us becomes
light, rare, sterile.
We breathe, briefly.
Our eyes, briefly,
see with
a hurtful clarity…

Finally, something set me off in my 30s and in a moment of self-righteous indignation I wrote Dad a letter. Yes, a letter, as the written word has always been my go-to and I had a thing or two or three to say. I don’t remember very much about what traveled from my mind to my fingers on the keyboard, other than the result was a three page, single spaced manifesto of how it was time for him to butt out and show me a little respect. He received it, never spoke of it and I felt like crap for writing it.

Mother's Day a few years ago

Then I turned 40. Like a miraculous switch of a light, with 40 came increased wisdom, confidence and an altogether new interest in, say, how someone can raise – with his devoted wife -- seven kids who all turn out pretty well. How he could provide for the needs of a large family on one salary and send all seven of his kids to college, turning out nurses, a doctor and business leaders. How someone can stay happily married through many decades of life and refer, with a twinkle in his eye, to his spouse as his “bride.” I started to watch more closely, appreciate more fully…I guess I was beginning to have a little respect.

Our memory, suddenly sharpened,
examines,
gnaws on kind words
unsaid,
promised walks
never taken.

As the years went by, Dad more than earned the title of Patriarch Papa, holding babies to his chest, joining his “bride” Carol at their grandkids’ school plays, donning costumes for our infamous Halloween Boo Bashes and bragging about his grandchildren during many a holiday meal. The family stories continued and he always offered the final word, but I don’t remember further unsolicited advice. Who knows why…maybe he held back, maybe I didn’t care. Life changes things.

One of many special Easter Sundays

One day, when he and I were alone in my den watching my youngest daughter Karenna, then a toddler, play, he looked at me and said “You wrote me a letter once.” I shifted uncomfortably, hoping he’d have forgotten it, but I suppose three-page manifestos are hard to forget. “I just want you to know you were right,” he quietly declared as I looked up. “You and my son needed to make your own choices and decisions, and you’ve done a good job.” I opened my mouth to speak but in typical Mudd fashion, he said “Let’s not discuss it anymore.” That was that, and it was good enough for me.

Dad loved our Boo Bashes!

Fast forward to later seasons, when the very years that increased my understanding of life weakened Dad’s eyesight, and ultimately, his body. I eventually experienced that great, ageless irony, that our parents – in this case, my father in law -- may have been right all along. Children DO spell love T-I-M-E, and although I don’t have regrets, you better believe I choked back tears when our first, and then our second, daughter packed their bags for college. What I’d have done for just one more field trip or school project. And while I’ve been fortunate to have good friends, many have come and gone as the years have passed – yet family, at least loving ones like mine and the Mudds, they never leave you. In time I also realized that parenting a special needs child requires love, strength and patience, and no amount of crying or pulling at your hair will change that but an obsession with the unfairness of it all just might destroy your life as well as your child’s. I recognized that anything ever said in Mackenzie’s defense was out of love – the same love that raised seven children, cherished 22 grandchildren and rejoiced over nine great grandchildren (and counting). The same love, in fact, that made him raise his arms to weakly hug my mother-in-law a few nights ago, even as his body was slowly beginning to shut down.

From Mom and Dad's 50th Anniversary
Celebration Cruise

Great souls die and
our reality, bound to
them, takes leave of us.
Our souls,
dependent upon their
nurture,
now shrink, wizened…

Last week, in a beautiful act of compassion and selflessness, my sister-in-law moved Dad from his memory care facility to her own home, so my mother-in-law could spend private time with him. Otherwise, Mom was separated from Dad because of COVID-19. We expected more time, but it wasn’t to be. Now finally comfortable and at peace, he received the Last Rites, we prayed the rosary at his bedside, beloved children visited and helped with his care and others who couldn’t be there called to check on him. The last day I saw him, after we said the rosary and spoke quietly as he struggled to breathe, my niece raised her phone to his ear and played recorded, loving messages from his many grandchildren around the world.

Juliette, Grandpa and Karenna

In recent years, since the kids have grown up and my career has started to sunset, I’ve wondered about my purpose. I get lost in thoughts about what I have or haven’t contributed to this world and where I’m headed next. I see younger people writing books, creating companies and moving the dial in life and work in a way I never have.

Grandpa and great grandbaby Jase
The oldest and youngest of the Mudd men

Our minds, formed
and informed by their
radiance,
fall away.
We are not so much maddened
as reduced to the unutterable ignorance
of dark, cold
caves.

But the day before he died, as I kissed his forehead to say goodbye, I considered a final lesson Dad offered me, and he didn’t even have to say a word: Be steadfast in your purpose, and the best purpose of all is family. Yes, the old saying “there’s nothing more important than family” is a tired cliché, but only if you say it and don’t live it. Phil Mudd didn’t just live it, he breathed it. And by breathing it he left a legacy far greater than what distracts us in this world. He left children who aren’t just related, they’re really good friends. He left a son, my husband, whose loyalty and love of family means he has never considered leaving us although there is a 90% divorce rate among parents of special needs children. He left a wife, his partner for nearly 70 years, who loved him as much or more than the day she married him. I considered the wonder of it all and was grateful for what should have been a heartbreaking moment, because there was joy. Joy, faith and love.

Holidays 2017

And when great souls die,
after a period peace blooms,
slowly and always
irregularly. Spaces fill
with a kind of
soothing electric vibration.
Our senses, restored, never
to be the same, whisper to us.
They existed. They existed.
We can be. Be and be
better. For they existed.

Holidays 2017

Last night, we brought some food to my sister-in-law’s house and stayed a while to comfort each other, discuss funeral arrangements and welcome the first of far-away family members who came in for this week’s services. My nephew poured me some wine and once again, the family stories started up, from sibling to sibling, around the kitchen table. Once again, I heard the one about Betsy being rolled under the desk, but this time I loved every word of it. And this time, as I balanced the glass on my lap and looked beyond those around me to the leaves on the trees outside, I wondered if Dad would agree that Betsy’s eyes were open under the desk or closed, and if Mom really didn’t know what they had done. He’d surely have had something to say. I miss him.

Yes, youth is wasted on the young, but if we’re lucky enough we will experience a time when we realize we once knew greatness, and we are the better for it. So today I count myself among the lucky ones. I’m blessed, in fact, because I once knew a proud and loyal human being, a wise and wonderful character, a person who understood his purpose and never doubted it. I will always be grateful that I once knew Phil Mudd…our Patriarch Papa.

Circa early '70s

(Poem: When Great Trees Fall, by Maya Angelou)

Imposter (Random Book Entry)

The closet allowed her a moment of respite. A break from the sea of humanity bulging through the convention center doors since sunup. At 6 a.m. there were around 2,000 people collapsed on cots and standing numbly in registration lines, by noon roughly 5,000, and numbers like 8,000 were floating around by early evening when the Chronicle called. Eight thousand frightened people clutching children, cradling pets, crying loudly without shame or too shocked to say anything at all, everyone wringing water from their clothes and hair.

The media vest she wore bore the red cross signifying international aid and because of this, the weary approached her. They pled for wheelchairs, they begged for medications, they worried aloud about family dogs gone missing in flood-filled ditches. At some point a child was lost amongst the throngs but eventually located by a police officer.

Wendy was woefully unprepared for this sort of thing…this crushing need.  It was bigger than her, larger than anything she had experienced. She had been naïve to think she’d be helping in her own way by giving interviews about one of the greatest natural disasters in US history. Sure, she’d spoken with ABC, CBS, NPR and the Wall Street Journal, but she had no idea where those wheelchairs were. “Wow, look at you” texts from her husband made it worse. She was an imposter humanitarian; a fake.

Wendy hastened toward the closet door when the Chronicle reporter called. She pried it open, maneuvered around some supply boxes and sat on the floor, the weight of the day in a heap on dark gray carpet. She ran her pen back and forth over her notebook, doodling while insisting to yet another journalist that yes, there were sufficient cots ordered for flood victims.

She was wrapping it up when he entered. A man of about 30, with brown hair and dark eyes, wet like everyone else but very much in control of his emotions. Confident. In fact, she assumed he was a Red Cross volunteer, but there was no vest. He carried a large box in his arms and a duffle bag was looped over his shoulder.

“Hi, I’m Larry.” Wendy glanced at him and motioned that she’d be off the phone momentarily. When she finished the interview she returned the greeting. He sat next to her on the floor, dropping the sleeping bag and box.

“Hi, I’m Wendy. Are you a volunteer?”

“No. I just came in.”

“You mean, from the floods?”

“Yep.”

Wendy looked again. Absent from this man’s face was the stress bearing down on the thousands of other faces she had seen all day. He was almost happy.

“Are you okay?” she asked.

“Well, it’s been a tough day,” he reflected. “A tree went through my roof, killing my dog. I’d have stayed at my girlfriend’s but she broke up with me last week. So I thought I’d hang out here.”

Larry shared these things like he was recounting what he had for breakfast. No grief for his pet, his lost relationship, or even what was left of his house.

“Would you like a Bible?” he asked, shuffling through the box. Wendy’s eyes immediately darted to his arms, lost in the box as he quickly grasped for what he said was a Bible but what she was hoping wasn’t a gun. No firearms were permitted in shelters but if he carried himself out there as he did in here, a well-meaning volunteer could mistake him as one of his or her own.

“I’m good. I have a Bible at home,” she replied.

“Oh, please take one. I have plenty. This one is a paperback and easy to carry.”

Not wanting to offend, she accepted the stranger’s gift.

“You know,” he said, eyes intent, voice lowered, “storms will come and man’s plans will die, but the love of Jesus Christ goes on forever. We don’t need to fear anything when we have God.”

Wendy glanced at the door, wishing someone, anyone would walk in. Larry seemed harmless enough, and that born again experience in college helped her understand his thinking. But she was uncomfortable alone on the floor with this man. How had he gotten past registration? It was probably easy enough as the numbers of flood victims crushed through the doors.

“Will you do me a favor,” Larry asked. “Will you pray with me?”

Well, this was a first that day, Wendy thought. Wheelchairs, lost children, reporters already trying to dig up dirt on what was going wrong when so much was going right. Now a stranger on the floor of a closet wanted her to pray with him.

Then she remembered: Imposter. Fake.

She allowed him to take her hands. They bowed their heads. Perhaps she could offer comfort. Yes, Wendy could make one person out of 8,000 feel just a little better that night. This is why she was here, right?

Maybe...just maybe she wasn’t a fake after all.

I'm Sorry (random book entry)

“Closet okay? Closet? Mom? I said closet okay?”

“It’s okay, Joy,” Sarah responded, exasperated.

Where was this coming from, anyway, this closet okay obsession? For years – since Joy could talk, really – she uttered “I’m sorry” at every conceivable moment. When she rose, when she lay down to sleep, when family members were conversing over a meal (or trying to converse), if you were on the phone, or trying to peck out some words on your laptop or sitting on the toilet. “I’m sorry. I’m sorry. I’m sorry.”

The only words capable of breaking the chain were “It’s okay, Joy, it’s okay.” If you attempted something in the order of “Why are you sorry?” or “Stop it, Joy!” or even said “It’s okay” loudly or sarcastically, you’d regret it. Crying, screaming or a physical attack would ensue; best to just acquiesce. About five minutes later, though, the mantra would begin all over again. It drove nearly everyone in the household mad from time to time; usually family members played along to simply get by. Confused visitors would often chime in with the wrong responses, but eventually learned to play the I’m sorry game, too.

Sarah often wondered what she did in her daughter’s younger years to cause this particular phrase to bubble up from Joy’s subconscious, a rote banter associated with autism as a form of comfort and control. Sarah knew she was no mother of the year, often losing patience over the decades of shattered glass, public tantrums and physical abuse. She was especially ill-tempered during the nine years of diapers, with Joy’s penchant for laughing hysterically while smearing feces on the wall.

With a wince she remembered slapping Joy after she attacked her baby sister in the back seat of the car, leaving the infant screaming with a bloody face as Sarah frantically pulled off to the side of the road. That was the time a police officer walked up to ensure Sarah wasn’t abusing her children. She pushed the memory away.

Her mind sometimes conjured up the image of a man named Gary…a large, gentle, sweet soul who used to exercise with his elderly father at a local gym Sarah frequented in her 30s. Joy would have been around six or seven then. The man’s face and behaviors suggested some sort of mental impairment, and before long you could piece together the dynamic of a tired father who had given care for more years than he ever anticipated. Sarah and the other gym patrons would look on – sometimes amused, other times alarmed – while Gary would punctuate every bench press, sit-up and arm-curl with expletives laced into what one could only assume was a parroting of the things he had heard within the privacy of his home. When he was a child, perhaps?

“Gary, you broke the pipe and now it’s flooded! Goddammit! Goddamnit!” he’d roar while sucking in air between curls. Sarah would steal a sideways glance at Gary’s father, who one could only assume was the owner of those words. Each gym visit brought with it fresh, colorful hysteria over ugly moments of days gone by. There were the times Gary screamed bloody murder over crashed vases and others yet where he’d hurl f-bombs about paint on a wall. Green, specifically. One time he broke loose over bed wetting. “Gary! I can’t change those fucking sheets ONE. MORE. TIME. Piss in the toilet!” His father -- weary, gray, the embodiment of patience -- would try to quiet him, attempt to console him, but no consoling or volume control was to be had until Gary was done with his physical activity and ready to leave.    

“That will never be me,” Sarah sniffed to herself, alternating between empathy, sympathy and finally, judgement for the dad. “I will do it differently. Joy will never say those words.”

No, Joy thankfully didn’t absorb the vulgarity – although there was plenty of that – but she sure was sorry. So, so sorry, all the time. Sorry around the clock. Sorry for more than two decades. Sarah wished she could speak with that father now, approach him with a hand to his shoulder, a gentle look, eyes locked in mutual understanding. She’d tell him not to worry, he was among friends here, that no one could possibly understand his personal journey. But it was too late now, and she was, well, sorry.

Sarah returned to the present day. Why the obsession with closets since the hurricane and those days at the shelter? Where did the I’m sorrys go? She didn’t know.

“Mom?”

“Yes, Joy.”

“Closet okay?”

“Yes it is, sweetheart. It’s okay.”

Before

I wrote this essay on Facebook in late March 2019, after spending a week on Capitol Hill, advocating for research funding for tuberous sclerosis complex -- the disease that has robbed our sweet Mackenzie of a normal life. I've chosen to post it to my blog.

********

My last TSC post for a while.

The upside of spending a week in Washington D.C. with like-minded advocates who understand your journey is indescribable.

But to be successful on the Hill, there is a downside. One has to strip away the smile, the humor, the wall — built brick by brick, in my case for 25+ years — to communicate the horrors of tuberous sclerosis complex. And to share your story, you have to revisit what was stored away many moons ago to protect yourself, your relationships, your family, your mental health.

So today I will look at this photo, shared with legislators, one last time. It was taken when Mackenzie Mudd was age one — one week before her first seizure, when the monster called TSC reared its ugly head. One week and four days before we first heard the words “tuberous sclerosis complex.”

-It was before more than 3,000+ epileptic seizures ripped through her body
-Before 27,400 doses of medication over 25 years sometimes worked to control her symptoms, sometimes not
-Before the drugs wiped our baby out so badly that she’d fall over in fatigue, again and again, face bloody on the floor
-Before 30+ MRIs, CT scans and ultrasounds, most requiring anesthesia for behavior and pinning down her arms and legs for fear of needles and masks
-Before 12 surgeries, holding her hand in pre-op rooms while she cried and looked at us in horror...then, in later years, defeated resignation
-Before the overnight hospital stays and the EEGs with wires all over her head, waiting for seizures to occur so doctors could follow her symptoms...while she hit us and screamed
-Before the stares and comments by strangers in public places
-Before we would cover our bruises from the rages associated with autism
-Before the judgement of whether I was a good or bad mother from people who had no clue
-Before nine years of diapers
-Before marriage counseling
-Before shattered glass and concern over the safety of our younger children
-Before I learned who my friends were
-Before my faith was tested
-Before thousands of tumors grew within her kidneys and lungs and more grew in her brain
-Before her skin was burned purple by lasers again and again to remove facial tumors
-Before sitting on a hospital room floor, holding my knees and rocking back and forth in tears
-Before fighting with insurance companies to cover medications and treatments
-Before learning to advocate aggressively in the school system for our child’s needs
-Before I had to consider a future in which my daughter would never be able to live independently
-Before her younger sisters went off to college and she was left behind
-Before I learned the depths of love
-Before I became a better person
-Before I understood compassion
-Before I came to cherish dedicated doctors and nurses
-Before I understood the gift of a husband who doesn’t leave, despite a 90% divorce rate among special needs parents
-Before I learned the value of special education teachers, therapists and caregivers
-Before I realized that people have their own problems and understandably don’t need to hear about mine
-Before I learned to use dark humor to cover my pain
-Before I started to build a wall
-Before medical progress came, but not enough
-Before I learned there is a tribe of others who walk with me, with whom I can stop being funny if I don’t feel like it and cry about the shit our sweet girl goes through

Before this past week, where we joined together to advocate on Capitol Hill. Before 425 meetings to ask for research funding to help us find a cure.

The photo will now be put away, as will the memory of that naive young mom who once propped up her one year old baby for a portrait and told her to smile. Today is a beautiful day, after all...time now to look forward, not backward. Anyone know any good jokes? 💙

#march4tscresearch

FACING THE STORM. TOGETHER.

“WE ARE FACING A STORM THAT MOST OF US HAVE LONG FEARED.” – Ray Nagin

After two years managing communications for the Red Cross, I know a thing or two about planning for storms. For example, be sure you have an emergency kit on hand, with water, non-perishable food, medications, batteries and

more in case you need to evacuate. Even so, despite the preparation by the city, emergency responders and others, Hurricane Harvey bore down on us with historic rain and flooding, causing untold loss and suffering. In time, the clouds broke, the light shined through and our city began to rebuild. Houstonians are resilient, but the road before us will be long.

Mackenzie turned 25 just a few days before the storm, and with the rain came a piercing metaphor. Since her devastating diagnosis of tuberous sclerosis complex (TSC) in 1993, we have researched, observed and adjusted countless treatments to manage a disease that causes thousands of benign tumors to grow on all of the vital organs, resulting in variations of epilepsy, autism, mental impairment, skin disfigurement and in some cases, premature mortality. Our emergency kit has consisted of doctors, specialists, 26,000 doses of medication during the course of 24 years, and more surgeries than I can recall at the moment. We are fortunate to have this kit, since thousands of those affected by TSC are misdiagnosed or do not have access to treatment. Sometimes we even forget about it altogether, breathing a sigh of relief while we enjoy a break in the clouds. Then the winds pick up and the storm returns.

Like the day I found Mackenzie face down in the dog’s water bowl, seizing. Had I not been there, she’d have drowned. Or when an emotion wraps itself around my heart, like it did a few days ago when I considered our two younger children are moving on as adults and Mackenzie still lives at home. Sometimes, the gusts rip through us in the form of another family’s tragedy, like that of a mom in London who kissed her son goodnight, only to find him in his bed the next day, having died of an apparent asphyxiation during a seizure. The stories come from around the world and across the country; storms that whirl and swirl and drape us in darkness, leaving us wanting for even a shred of light.

But if Hurricane Harvey and TSC have taught us anything, it’s that with every storm there is, at some point, the decision to move on. As with a carpenter rebuilding the foundation to a home once destroyed, doctors, specialists and educators research ways to control -- and someday cure – TSC. Even more, TSC is what’s called a “linchpin” disease, meaning the genetic pathway involved in it is the same pathway affecting over a dozen major diseases andisorders, including autism, epilepsy, cancer, and obesity. This is light not only for our daughter, but so many more.

Because of those who have moved forward in the face of TSC’s darkness, clinical trials of a new drug are showing reduced symptoms of autism in mice AND a reduction of seizures in humans. Afinitor®, a “miracle drug” available only in recent years, is saving Mackenzie’s life by helping to control her kidney and lung tumors. The once-deforming angiofibromas on her face are now controlled by Rapamycin cream. You don’t need to understand all these words but if you are one of the many people who have kindly contributed to our annual TSC “Step Forward for a Cure” walkathon over the years, YOU have played a role in these treatments because you have helped fund them. You have provided the respite between storms; you have given us hope.

“IT IS ONLY IN SORROW BAD WEATHER MASTERS US; IN JOY WE FACE THE STORM AND DEFY IT.” –Amelia Barr

Our family and friends know we only request donations once per year in conjunction with the “Step Forward to Cure TSC” walk-a-thon program which offers the opportunity to make an impact on the lives of those living with tuberous sclerosis complex as well as fund research into cures for other diseases like epilepsy, autism and cancer. The 2017 Houston walk was postponed due to the hurricane but is now slated for April 2018, where, like Houston’s resilient citizens who faced down a devastating storm – the TSC community will come together to fight a disease that has made life all too unpredictable.

Because, at the end of the day, we know that seeking light is a matter of choice. Because of you, we have that choice. Thank you from the bottom of our hearts for your consideration.

If you wish to contribute to this year's Step Forward for a Cure Walkathon, just click on http://giving.tsalliance.org/site/TR?px=1072045&fr_id=1491&pg=personal

On vaccinating our children

Mackenzie's first seizure occurred when she turned one--the day after her first MMR vaccine. At first blush, one could say the vaccine caused that seizure as well as those that followed and eventually, her developmental delays. The fact of the matter is the MMR vaccine may (may being the operative word here) have set in motion one presenting symptom of something we did not yet know: Mackenzie had a chromosomal disorder called tuberous sclerosis complex. 

In those dark, early days, I agonized over what I did or didn't do to cause this devastating situation...was it the glass of wine I had before I knew I was pregnant, was it the hair dye that offered those reddish highlights, was it some sin or hateful act for which God was cursing the greatest joy in my life? In due course I let myself off the hook because I finally accepted the fact that TSC is a medical disorder occuring at conception. 

Over the past 20+ years since then we have met other special needs parents who have not been "fortunate" enough to receive a medical diagnosis, so they search in vain for answers explaining their child's developmental delays. Often labeled with a nebulous thing called PDD (pervasive development disorder), their kids lag behind their peers for reasons unknown. An autism diagnosis is no better, because its causes are still mainly theoretical. Hence the questioning and inner turmoil continue...what did I do to cause this?

Vulnerability fueled by grief is a powerful thing. I once ordered special herbal supplements from California and mixed them into Mackenzie's food because a mother told me it would aid with speech, and oh, how I wanted my toddler to talk. Another time I considered mercury testing because I read that mercury in the bloodstream could cause seizures. I won't even mention the potions, products or foods I considered back in the day. Heartbroken parents will do just about anything, it seems, to raise that veil of darkness for just a little bit of light. 

Then an actor uses the stage of national media to air her own experiences leading to the faulty hypothesis that vaccinations are the villain--immunizations are the response to the timeless, infernal question of "Why?" Finally, the grieving have their answer; perhaps not a firm one but by God, they'll take it. At the same time, those with healthy children allow fear and the lull of celebrity to trump common sense until finally, entire movements exchange proven science for limited theory until harm is done. Harm we are seeing in our headlines today.

Vaccinations have saved millions of lives and there is no scientific data firmly linking them to disease. It is a civic duty, not just a personal choice, to vaccinate our healthy children so young babies, the elderly and those with medical conditions--like Mackenzie, who could no longer receive vaccinations after her diagnosis--do not succumb to the horrors of earlier centuries. Politicians suggesting immunization of children is a personal choice are either idiots or so absorbed in their own careers they have forsaken reality for the purpose of political gain. And celebrities who prattle on while millions of vulnerable or otherwise easily persuaded parents watch, and believe, them are utterly irresponsible. 

Bottom line: Bad things happen to good people, even innocent children, and they often happen without a reason or any discernible purpose. In the end, Mackenzie's MMR vaccination didn't cause her TSC any more than it caused her to love art, animals and cartoons. Vaccinations didn't cause our second child to be a national merit scholar nor our third to be a singer. But because of responsible parents who have immunized their children, vaccinations have afforded all of my kids a life and a future without polio, measles, typhoid, tuberculosis, whooping cough, rubella or who knows what else I am forgetting because I am lucky not to know of them in my lifetime.

That is, unless the arrogance and ignorance associated with our nation's anti-vaxxing movement brings us a century backwards. For us all, I pray this will never come to be.