A Silent Love

She tore off a slice of pizza and nudged it onto my plate. Had I not turned around before rolling my bowling ball down the lane, I wouldn't have known. I'd never have seen the small gesture, the slight, beckoning glance that conveyed "This is for you." I'd have missed it, which is pretty much par for the course with Mackenzie. Blink your eyes and an ocean of discussion can be lost.

Ever since I was old enough to learn that there were people in the world other than myself, I've been a communicator. Fuzzy 8mm movies show me on my first birthday, party hat dangling from my ear and diapers swishing against chubby thighs, jabbering to anyone who would listen. Italian and extroverted, the give and take of verbal discourse for me is like air. The movie Castaway is on my all time list of "movies I hate," due to the sheer loneliness of it. Give me a week or two with Wilson the soccer ball as my only friend, and I'd be looking for the closest cliff from which to hurl myself.

So, on Mackenzie's 18th birthday, as the bowling ball rolled down the lane and plopped into the gutter with a thud, I jumped and laughed, asking her what she thought of Mommy's lousy bowling. There was a semi-smile, but nothing else. Silence.

Diagnosed with tuberous sclerosis complex on her first birthday, Mackenzie is moderately mentally impaired, epileptic, and exhibits autistic behaviors. She can articulate in fragments but she's not much for conversation. Don't get me wrong--she's not a quiet kid. In fact, she'll laugh at her favorite shows on Nick, tell us to move when we dare to sit in her favorite chair, or exclaim "I did it!" when she mixes pancake batter or helps us walk the dogs. To determine if she's had a good time at camp, school, a party or just about anywhere, though, we need to call people who were there. Otherwise, it may go like this:

What did you do today, sweetheart?

[Nothing.]

What was your favorite thing about today, Mackenzie?

"I'm fine."

That's nice, but what did you do today? Did you see Aaron?

"I like Sponge Bob!"

Did you make food today?

"No."

Did you do any crafts?

"Yes."

What were they?

[Silence]

Come on, sweetie. Tell me what you did.

"BOSKEEEEEEE!" (Bosco is the name of one of our dogs...somehow his name has turned into a happy Mackenzie chant, to be repeated multiple times for reasons unknown to us.)

In stressful or unusual situations, she surprises us by belting it out like a talk show host. On one particularly memorable Halloween evening, she insisted on leaving a party due to the host's frightening decorations. She stationed herself next to our car and exclaimed, "I want to go home right now. Do you hear me? Right now! It's scaring me and I SAID I am going home! Right now!" I asked myself, where the heck did that come from?

Such occasions remind me that there is much more in Mackenzie's mind than any of us can understand or comprehend. I'm reminded that my daughter is a mystery...in many ways a gift to be opened, like those Russian nesting dolls, one by one. But slowly, excruciatingly slowly, over the months and years.

So on her August 16 birthday, we did the mother/daughter thing: First, the bowling, followed by lunch, then a mani-pedi, a shopping trip to Target and finally, a visit to Chilli's for a big hot fudge sundae. Perhaps ten sentences were exchanged the whole day. I found myself reaching for my iPhone--a communication fix of any kind, be it e-mail, Twitter, Facebook, anything--but I resisted. Despite her lack of verbal discourse, she is very aware of her surroundings. She deserves the respect of an attentive mother.

It was at Target, observing a number of other moms with their college-bound 18 year olds, that I succumbed to a moment of melancholy. They were stocking up on bedding and toiletries, disagreeing on purchases, laughing over comments too soft for me to overhear, calling out to each other and comparing pants, pajamas, and sweaters. The words blurred together and became a hum of sorts; the buzz of communication.

It's then that I allowed myself a little daydream--one I've had before--of Mackenzie and me in Heaven. You see, it's my hope that some day we'll get to catch up on everything we wanted to say on Earth. Since people with tuberous sclerosis complex don't always live full lives, in my daydream she is at the foot of my bed, as an angel, while I am dying. (For some reason I think I'm going to die in a bed, but that's besides the point.) As I pass over into my new life, she is bubbling over with excitement with all the things she can't wait to tell me. We hug and laugh, and she's healthy as a horse. It's then that she spills forth about what she loved during her life on Earth, what she hated, what she thought when we did this, that or the other. I ask her if I was a good mom or did I lose my patience too often, why did God allow her to suffer so, and she holds me and tells me to forget about all that, because we are going to have a wonderful time throughout eternity. There's a lot of joy in this daydream. Bright light, too.

"Can I have it?"

Holding a computer game and a package of Play Dough, she smiled. I'm back at Target, very much alive, and very much in the here and now.

"Of course you can have it," I replied. "It's your birthday, sweetheart."

"Am I silly, Mommy?"

"You're a sweetheart, Mackenzie."

We drove home, where I told my husband all about our mother/daughter day of fun while Mackenzie opened the Play Dough. I hugged our younger girls and learned all about their days, which they more than wanted to discuss.

It was the following evening, as I was opening the refrigerator door to pull out the milk, when I heard it. "Thank you, Mom." I turned around to see Mackenzie smiling at me. "For what?" "For yesterday." "Yesterday?" "Bowling. Pizza. Nails. Thank you." I stood there holding the milk, speechless. Yes, speechless. As if to punctuate the moment to ensure I understood her, she said "I had fun."

And so did I. My daughter has taught me more in 18 years than I could ever fit into a blog post, but one thing I never anticipated, one thing I didn't consider, is the value of a relationship where few words are spoken.

The gift of a silent love.

Happy birthday to me! Holding a present at Target.

Time Flies When You're Living It

I recently wrote a post for "Rocket Thoughts," my marketing blog, on all the excuses us bloggers make for, well, not blogging. Check it out if you care to do so.

Something I didn't write about, though, is the sheer joy of living life so full and so fast that you don't make time to write about it. As John Lennon once said, "Life is what happens when you're busy making other plans." Had he lived during the digital marketing age, he'd probably have said "Life is what happens when you're staring into your iPad, iPhone and laptop."

Even then, it's time to catch up on My Muddy Life over the past few months:

SPRING HAS SPRUNG!

MACKENZIE'S PROM: When they told us she had tuberous sclerosis at age one, I never in a million years thought I'd see our daughter go to the prom. The photo below shows not only a giggling teen with her handsome date, it represents one of the happiest days of my life.

Aaron & Mackenzie

INTERFAITH MINISTRIES: I was overwhelmed with a busy calendar and grumbled about a public speaking workshop I had to do for a group of kids, since they weren't my "target audience" for Full Tilt Communications. Surprise! I had the time of my life, learned more from than they did from me, and was humbly reminded that life is more about giving, than getting.

MJ and cool kids

GIRL SCOUTS: Took Troops 20080 (Karenna's troop) and 12025 (Juliette's) camping in the Spring, along with my BFFs Brenda Moore and Sheryl Reynaud. This is the one shot where Juliette and Karenna weren't fighting.

Juliette, Mom and Karenna

SCHOOL'S OUT FOR SUMMER!

Troop 20080 and GS Leader MJ celebrate at "End of School Year" party. I love these kids, but geeze, I needed a break.

Craziness runs in the family. Juliette and Karenna at Vacation Bible School.

The start of my one-month 50th Birthday Bash!

1) Girls' Weekend: Betsy, Debbie, Jackie and me at the San Luis in Galveston.

2) Second bash: No photos! June 17 Baubles, Broads & Business Banter. Lots of fun biz friends came by for a splash of margaritas and a look at my friend Nesh's "Stella & Dot" Jewelry.

Then....the mother of all surprises: Chris threw me a major soiree at the Cadillac Bar. Friends from far and wide showered me with birthday love. Weeeeeee!

I'm pooped. More summer to go, in Part II.

Cheers!

Rocky's Crepe

Juliette and puppy Rocky, December 1998

I'll come out and say it. I don't quite trust people who don't like dogs. This is an ugly truth I've hidden for years; me, of all people, who doesn't know a stranger. Of course, it isn't that I don't like people who don't like dogs...it's just that non-dog people and I will almost always do fine on the surface but not on a deeper level that requires a bit more of something. Emotion? Compassion? I'm not sure but whatever it is, dog appreciation is a relationship indicator for me, much like a barometer is an indicator of the weather.

This is one of the many things I learned from one Rocky Balboa Mudd, the furry guy who padded into our lives, all spittle and fur and licks, in October of 1998, and died peacefully in my arms last month, as I choked back the tears.

There's no point in writing a doggy obituary here, although I've tried to do it countless times. Better writers like Anna Quindlen penned one of my favorite dog essays of all time, called "Good Dog, Beau. Stay," and there's "Marley and Me," which had me sobbing so loudly on the beach last year that my kids walked away in embarrassment. (Unsolicited advice: Skip the movie and read the book...but perhaps not in a public place, like the beach.) Yes, anything I could say has been said before, including "What I Learned From My Dog," variations of which have been shared all over the world.

At this point, those of you who don't care for dogs won't be able to close this post fast enough. I understand. Us dog people can be pretty odd. We exchange fur balls, chewed furniture, backyard poop and overturned trash cans for slobbery, tail-wagging, face-licking love. Many people call it loyalty, but I think that loyalty is the result of love--sheer, happy, unadulterated, running from one side of the kitchen to the other and jumping up and down love. Like a nectar of the Gods, this love, once experienced, is hard to give up. Even I have occasionally scratched my head when friends have paid thousands in canine chemotherapy or purchased those strange wheel devices for an elderly furry companion who can no longer use his legs. But I've never asked why, because I know why. Us dog people, we all know why.

There comes a point, though, where the compassion required for owning and loving a dog is the same compassion from which we must draw to make a final, humane decision. In his book "Me Talk Pretty One Day," humorist David Sedaris observed upon the death of his cat: ..."with the death of a pet, there's always an urge to string black crepe over an entire ten or twenty-year period. The end of my safe college life, the end of my 30-inch waist, my faltering relationship with my first real boyfriend: I cried for it all and wondered why there were so few songs written about cats."

Indeed, Rocky came into our lives when Juliette was a toddler and Karenna was merely an idea on the horizon. He stood watch, head titled and eyes alert, during countless Halloween parties, poolside luaus and family suppers. He presided over the decorating and tear-down of 12 Christmas trees and managed to get himself on the front page of the Chronicle, held tight under the jacket of our then 12 year old son, Jeff, who is now a 24 year old young man. He chewed up grade school science experiments, ate socks by the bagful, slid across the kitchen table when our backs were turned and flew like the wind down the street whenever the door was left ajar. He was there when I came back, exhausted, from my father's funeral in Florida, and sat by my side. No words, no requests, just a nuzzle and a lick, which was enough.

If I close my eyes, I can see our girls running after him over the years, evolving from sticky-fingered tots to knee scraped elementary school children to, now, young ladies...all legs, laughter, and hair flying in the wind. Rocky's crepe, it seems, wraps itself tightly around the most significant memories of our lives. Or, as I'd like to think, Rocky's very existence made our memories more significant...including the most difficult one, in which each of our children went up to him one last time, patted his back and kissed his forehead, before that final trip to the vet.

Which brings me back to that trust thing. People who don't quite get a dog's love are just fine, I'm sure, but we're cut from different cloths and we always will be. I doubt they'd consider the old saying "Lord, make me be the person my dog thinks I am," as something of value. But I do.

Rocky, old boy, I hope I am the person you thought I was, and may I always strive to be that person in the future. Thanks for teaching me what a joy it is to be a dog person. Odd or not, this is a club I'll belong to for the rest of my life.

Juliette and our boy, March 2010.

Making Lemonade...

It hurts a mom's heart to start the legal guardianship process on behalf of her special needs child. Mackenzie, age 17, will never be able to make her own medical decisions or attain adult independance, compliments of tuberous sclerosis complex. On the upside, there are angels who have paved our path for the past 17 years, making the special needs journey one of compassion, joy, and even a laugh or two. Case in point: Michele K. Goldberg--a lady who truly has our backs. Or more specifically, Mackenzie's back. Lemonade, anyone?

Above: Michele Goldberg and
Mackenzie holding the Scales of Justice.

It's Worth A Try

To Emily Hayden
Office of Rep. Brad Ellsworth
8th Congressional District, Indiana

Dear Ms. Hayden,

I'm going to do something a little bold. Attached to this e-mail is a 30+ year old photo of me with your congressman, when we were just kids. When I recently learned that he is indeed a congressman, the first thing I thought was "maybe he'll remember me, and maybe he'll take an extra second to learn about our cause."

On February 24, you met with Susan Campbell, who is one of your constituents. She told you of a horrible disease called tuberous sclerosis complex, and shared with you the story of Taylor Skelton, who is also your constituent. Very briefly, I will tell you our story:

Mackenzie Joy Mudd was born on August 16, 1992. She was absolutely perfect in every way, until age 1, when she started to have seizures. An MRI determined the cause to be tuberous sclerosis complex, a genetic disorder causing tumor growth on all the vital organs, resulting in varying degrees of epilepsy, mental retardation, autism, skin disfigurement, vital organ malfunction and premature mortality. Indeed, during the past 16 years, our Mackenzie has had more than 2,000 epileptic seizures, 12 surgeries, and has taken over 40,000 doses of medication to control her epilepsy. She is also moderately mentally retarded and will never be able to live on her own. We love her dearly and we're blessed with three other children. Although ours is a happy home, our hearts break for our daughter and thousands like her who must suffer from this relatively unknown but devastating disorder.

Susan Campbell said you were responsive to our request that Congressman Ellsworth sign the dear colleague letter requesting $15 million in funding. To that end, I'd like to follow up and reach out to the Congressman myself, asking that he sign the letter on our behalf. Since the beginning of our congressional outreach in 2002, we have raised $29.5 million in funding that will benefit not only tuberous sclerosis research, but related disorders like epilepsy, autism and cancer.

Please know that I have no underhanded intentions here. During our February trip to DC (I met with various Texas legislators), my TS colleagues kept joking about my "friendship" with the Congressman. I have no friendship with the Congressman, as I have not seen him since I was 18 years old! However, when you're the mother of a child who suffers, you'll do unusual things like dig up an old photo taken during Spring Break in Daytona Beach, circa 1979...with the hopes that one more person may support your cause.

And I hope he will.

Thank you for your time in reading this note. I wish you and Congressman Ellsworth's office all the best as you serve your constituents and support your community in a meaningful way.

Sincerely,
MaryJane Mudd
Mackenzie's mom
Tuberous Sclerosis Alliance Board of Directors

May 2010 Update: Congressman Ellsworth not only signed our letter, he sent his own personal note to the Appropriations Committee on our behalf. The Tuberous Sclerosis Alliance is greatly appreciative of his support, and so is this special needs mom. Best wishes with the Senate race, Mr. Ellsworth!

So It's Come To This

Nice hair, you skinny twenty-something beeeoch.

The year was 1986. Michael Jackson was the king of pop and the width of women's shoulder pads were outdone only by the height of their hair. The year I saw a photo of myself in a white snowsuit, declared that my rear end looked like the back of a truck, and threw myself into dieting and exercise. Merciless exercise. Relentless exercise. Being age 26 with little else to do outside of work, I swam laps at the community pool, "felt the burn" with Jane Fonda tapes, partook of the Jazzercise craze, joined a dance class and even a cross country ski group to make use of Michigan's blustery winters. I bounced up and down in my sister's tiny NYC apartment, beseeching her to join me as I skipped along to my aerobics video, adorned with Flash Dance leg warmers and torn tights. She winced at me and continued to read the paper.

Within six months I was 15 pounds lighter with nary an inch of body fat. So hard were my abs and buttocks, you could flip a coin off of either area and it would fly across the room.

After the body came the arrogance. Well, I assured myself, I will NEVER gain weight. I will NEVER stop exercising. I cannot STAND women who have babies and let themselves go. What do they do with all their time, anyway? Paint their nails and arrange baby booties? I will NOT let myself go. NEVER! Whenever I spotted a woman with a haggle of kids and a little extra bulkage around her midriff, I sniffed in disgust because I, MaryJane Natale, was dedicated to good health and rock hard abs. Period.

Fast forward to 2010. Age 49. Mom of three. Consulting business. Slow metabolism. Crazy busy. Junk food in the pantry.

The good news: I'm not gross. I'm "hanging in there," as a nice young woman at the gym recently told me. The bad news: If I try to flip a coin off of my abs it gets stuck in the folds and then drops to the floor. I still work out, but it's not as easy as it used to be. My schedule doesn't coordinate well with aerobics classes and in-home exercise equipment ends up being used for wet pantyhose and Christmas ornaments. The hyper pace of my life has put me a little out of sync with daily exercise, and I'm batting at three times per week at best.

So it's come to this: I just bought a pair of Skecher "Shape Ups," guaranteed to "help you get in shape without ever entering the gym!" Of course I know this is a bogus claim. Even if these ridiculous-looking shoes exercise my legs, they can't do a thing for my arms or cardiovascular health. Still, what the heck. They're worth a try.

Help me, oh crazy clown shoes...

If I could go back in time and tap MaryJane Natale's 26 year old shoulder, or better yet, her rock-hard butt, and show her these shoes, she'd smirk. Such a loser, that middle-aged mom, she'd think. The bottom line is it doesn't matter, because that 26 year old had a very small frame of reference from which she based her very strong opinions. I wouldn't trade my family for anything, and if a few squishy parts are the debt to pay for an incredibly full and satisfying life, so be it. I'd tell her to kiss off. Better yet, I'd tell her to kiss my soft posterior. After all, not only do I have a lot going on, I manage to stay in good health AND I have a hunk of a husband who, after 20 years of marriage, still thinks I'm HOT!

So here's to a soft rear end and big clown shoes. I'm okay with them, not because of how they look, but because of what they represent. Take that, Miss Natale!

La Cage aux Fun!

So I was in Oregon visiting my big sis, Jo-Ann, a couple weekends ago. One night, she and her husband, John, asked if I wanted to go to a comedy club or a drag queen cabaret. To me, the choice was simple: Drag, Drag, Drag! I'd been to a hundred comedy clubs, but when would I ever again have this opportunity? It's not like I can lean over to my husband as our kids are running through the house, and ask "Why don't we go to a drag queen cabaret tonight?" We went to Darcelle's Night Club, featuring the beloved 79 year old queen herself, Darcelle. I had the night of my life! People can think what they want about guys who dress up as women, but I'm all about living life to the fullest. That, and sequined ball gowns!

Can you believe this lady is 79? More unbelievable: She's performed in drag for 43 years. That's a lot of face powder and girdles.

The sequins! The colors! The glamour!

Me with Jo-Ann, before heading out. She teased me as a kid, but now she takes me to drag queen cabarets! There's a joke in there somewhere, but anyhoo, I love her.