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.

A Decade of Jazz!

About 10 years and nine months ago, Chris and I looked at each other. One more baby? Maybe. With three kids already and one with special needs, did we need our heads examined? Most likely. But we took the plunge, and on January 26, 2000, our New Millennium Baby was born. Now it's impossible to think our life could be complete without Karenna Rose Mudd--but call her Jazz, thank you very much. She likes the name because it's her very own brand: A feisty, funny, creative, singing, social, off-the-charts extrovert. The one I lock horns with on a daily basis because she reminds me of someone I know...but my nickname isn't Jazz.

Happy Birthday, my love! We wouldn't be the crazy Mudd clan without you.

Muddy Christmas!

We wish our friends and family a joyful Holiday Season and a New Year that makes you want to dance!

Boxing Match With God

Step right up, ladies and gentlemen. On the left we have a hapless human, MJM, and on the right we have the one and only, the Almighty God, or AG. Who will win the fight? Watch and see...

MJM, to AG: So let me cut to the chase: I hate you.

AG: What's wrong, my child?

MJM /hook to the chin/: Don't "my child" me! What do you think is wrong? She was so young.

AG: Your friend Tracye...

MJM: And so vibrant.

AG: Tracye.

MJM: Damn right /hook/hook/hook/, Tracye. So vibrant, so beautiful, so absolutely loved by so many. Did you see how many people mourned her at her funeral? There must have been 800, 900 or more.

AG: Yes.

MJM: Then maybe you also saw her heartbroken husband, Doug? Her tiny daughters, Abby, Julianne and Anne Renee?

AG: Yes.

MJM: /stiff jab/ Yes, yes, yes! How dare you? How dare you allow this to happen? Hodgkin's is supposed to have a 90% cure rate. What good could possibly come from cutting her down in two short years--just two? No bone marrow match, no successful chemo treatment. /uppercut/uppercut/hook/ DAMN you!

AG: There are things you don't understand; things you will never understand.

MJM: Blah, blah, blah. I've heard it all before. Like, when you took my one year old baby and gave her tuberous sclerosis complex; that was just rich. That was 2,000 epileptic seizures ago, let alone the surgeries and mental retardation.

AG: Yes, when she was diagnosed in 1993, you said you hated me then, too.

MJM: Yes, and I flipped you off when no one was looking. But believe me, that was nothing compared to how I feel today. Tracye was gentle, kind, funny, compassionate, a model wife and mother, a community leader. /stiff jab/ And yet you let murderers and terrorists live. What the hell is up with that? Are you even out there? Do you exist? /straight right/

AG: I have always existed. Especially during your suffering.

MJM: Oh don't tell me, is that when you carried me? Like Footprints In The Sand, God Said No, and a string of other feel-good, mindless essays that people like to forward on e-mail. Or for special needs parents, the Trip to Holland or Heaven's Very Special Child. Who writes this stuff? Let's not forget the ever-loving Tapestry analogy. I believed it when I was younger; I don't believe it anymore.

AG: Your devastation hurts me more than you know. And I have seen more than you have seen. Do you believe you are the only one who suffers? Consider the poor, the sick, the abused. Think of those who have suffered at the bloody hand of war throughout all of history.

MJM: Because you allow it! Why do we bother praying? We had so many prayer chains going for Tracye that they could have circled the earth 10 times. You tell us that whatever we ask for in your name, we will be given it. So we asked for one incredibly special human being to be spared. You didn't do it! /jab/jab/kick/ You could have and you didn't!

AG: But my will must be done for reasons you do not yet know. Trying to explain the reason for suffering and death is impossible, my child. As a friend said to you recently, it would be like trying to explain physics to a two-year-old.

MJM: Back to the Tapestry thing, right? /upper cut/kick/scrape/ It's not fair! I loved her! Hundreds, possibly thousands of people loved her. Her family loved her. They depended on her. She was always supposed to be there, with her vibrant spirit and sense of humor. She even laughed in the face of your crappy cancer. Called her chemo pole "Joel the Pole" and organized her daughters' birthday parties from her hospital bed. She did so much good. She was only 41! I'm seething with anger, with anguish. I used to be one of your biggest fans. What a sham you are.

AG: Do you remember Tracye's wake and funeral?

MJM: They were last week! /punch/uppercut/punch/ Of course I remember them!

AG: Think about the others who filled the pews of the church. All of them were hurting, too. But think about the collective warmth, love, and faith in that church.

MJM: Whatever!

AG: You felt it, didn't you? After days of crying and hating me...you felt it.

MJM: I suppose.

AG: I was there. I am always there. I cannot explain suffering to you while you are on earth. But I will always be there to comfort you.

MJM: Why won't you fight? Why do you just stand there? /kick/

AG: It's not the first time I've been hit, beaten and hated because people misunderstood me. It's not the first time I have chosen not to hit back. I once hung on a cross for you.

MJM: Not everyone believes that. A long time ago, I believed it without question. Now I don't know what to believe.

AG: This is what you were taught, and what you believe. And as you think of dying and the place I have prepared for you, the place where Tracye is now one with the angels, consider what her eulogist said at the altar. "When all of us enter Heaven," our first word will be "Oh."

MJM: Yes. She said "Oh...this is why my child died, Lord. Now I understand. Oh...this is why there was poverty, Lord. Oh...this is why Tracye went home to be with you."

AG: Exactly.

MJM: It hurts. My heart hurts. And I am so worried for her family.

AG: I know. But please try to remember something I said a long time ago. Come to me, all of you who are weary and carry heavy burdens, and I will give you rest.

MJM: Rest isn't an answer. But I won't get an answer right now, will I?

AG: No, but you will receive comfort. You prayed the morning of her death, and insisted that if I was going to take her, that I better "damned site take care of her family," right?

MJM: Yes.

AG: Almost immediately, you were contacted by widowers who experienced the same loss as Doug--one who was left with three daughters of his own to raise--yes?

MJM: Yes.

AG: Perhaps you could consider this an answered prayer.

MJM: [silence]
AG: Did you not receive kind and loving notes from friends and family, as well as prayers to lighten your heart?

MJM: My heart doesn't feel lightened right now.

AG: You may not feel it now, but your heart is healing. When your daughter was diagnosed with tuberous sclerosis, and you denounced me that evening, what happened next?

MJM: I met an older man the next day, under a very unusual circumstance. Without prompting, he told me about his mentally retarded brother. How happy the brother was; how happy their family is. Shortly after that, I heard a song on the radio about how children like Mackenzie are a "blessing in disguise." I thought then that I felt your presence.

AG: When your mother died?

MJM: The light on her face...falling softly from the sun shining through the stained glass, before the internment. I felt your presence.

AG: Because I was there. Do you truly hate me, my child?

MJM: Yes. No. I don't know.

AG: You know, I stay in one place; I never leave. I am always here, and I wait for my children. They leave me, and they come back. I hope you will come back.

MJM: I just don't understand why you had to take her.

AG: I know. I ask that you trust me, that you remember the beautiful things about your friend and that you release your anger. You know she would do the same. She is so happy now. I can promise you that.

MJM: Well, I suppose I'll lay down my boxing gloves now. Hating someone takes a lot of energy. And, I suppose I do feel your presence...when I ask. When I try, and when my heart is open.

AG: I am here, and I will never leave. Remember to look for me, and you will find me. Then someday, maybe not tomorrow, but someday, you too will say "Oh."

In Loving Memory of Tracye Ford Sellers

Goodbye For Now