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.

122 Random Things That Suck

Facebook of late is awash in everyone's "100 Days of Happiness" and "Seven Days of Gratitude."  I can't take it. I mean honest to God, it's too much sharing, even for me. Do we need to know your husband makes you breakfast in bed each Sunday or your toddler made a poo-poo? Yes, I'm grateful for God, husband, children, friends, pets, good health, employment, my country and frozen margaritas, no salt. Even so, let's get a little real here. Don't some things just get under your skin? Tick you off? Annoy the ever-loving bats--t out of you? If not then I'll raise a glass (frozen margarita, no salt) when you're selected for sainthood. I, on the other hand, just completed a most therapeutic exercise listing some random things that suck:

1.      Lines

2.      Crowds

3.      Excessive heat

4.      Lines, crowds and excessive heat all at one time (never been to Disney World for a reason)

5.      Body odor

6.      Whiners

7.      Liars

8.      Sitting next to airplane yakkers

9.      Middle seats on airplanes

10.   Stuck in middle seats on airplanes between whiners or yakkers with body odor

11.   Fat men in speedos

12.   Fat men in speedos who flirt with me

13.   Constipation

14.   Computer problems

15.   IT help desk people I cannot understand

16.   IT help desk people who cannot understand ME

17.   Circular phone menus (like, where the hell is a human?)

18.   Injustice

19.   Bourbon

20.   Whiskey

21.   Hemorrhoids

22.   Eye rolling

23.   When people say you’ll love a dish, then you try it and you hate it and they’re looking at you, like, “Do you love it?”

24.   People who don’t RSVP

25.   Automatic flushing toilets

26.   Automatic faucets

27.   When people arrive too early for a party and you’re not ready

28.   Trying to tie a scarf

29.   No-shows

30.   Facebook posts imploring people to “cut and paste to your own page”

31.   Facebook game invitations (I don’t want to play your stupid games)

32.  When women use those tissue toilet covers and then just leave them there. You think I want to sit on your tissue, you freaks?

33.   Traffic

34.   When people say I look sick but I’m not sick at all, so I wonder why I look so bad

35.   Dental fillings

36.   Dental drills

37.   Dental anything

38.   Dentists

39.   Loneliness

40.   Bullies

41.   Food stuck in my teeth

42.   When noone tells me there’s food stuck in my teeth so I wonder how long I’ve gone around like that

43.   Disrespect

44.   Sharing a bed with anyone besides husband, kids or pets

45.   Jalapeños

46.   Poor grammar

47.   Big, fat  know-it-alls

48.   Feeling de-valued

49.   Tedium

50.   Pantylines

51.   People who belittle someone’s dreams

52.   Finding moldy food in kids’ rooms

53.   Smell of cat pee

54.   People who pass gas in elevators and step off, so that newcomers on elevator think I did it

55.   Opportunists

56.   Work politics

57.   Corporate buzz words so spectacular that linked together they make a whole new language

58.   Unmade beds

59.   When people inadvertently spit on me while talking

60.   People who don’t respond to emails or phone calls (just give me a damn answer, thank you very much)

61.   It’s when it should be its and your when it should be you’re

62.   Speed bumps

63.   Justin Bieber

64.   Getting lost

65.   Racism

66.   Homophobes

67.   People who turn their house lights off on Halloween

68.   Laziness

69.   Flight delays due to nothing in general

70.   Chanel No. 5

71.   Weak handshakes

72.   Wobbly restaurant tables

73.   Weird celebrity baby names

74.   Drunk driving

75.   When men don’t aim directly into the toilet

76.   Indirect answers to direct questions (just give me a damn answer, thank you very much)

77.   Passive aggressiveness

78.   Chewing gum with mouth open

79.   Regret

80.   People who tell me to “rein it in” because I’m too happy, bubbly, chatty or otherwise not conforming to their idea of proper behavior (I say, kiss my arse)

81.   People who assume I’m shallow because I’m too happy, bubbly, chatty or otherwise not conforming to their idea of proper behavior (Kiss it again)

82.   People who assume I’m stupid because I’m too happy, bubbly, chatty or otherwise not conforming to their idea of proper behavior (Kiss it three times)

83.   Overdone plastic molded packaging that causes me to cut my finger when prying open a cheap toy

84.   Hypocrisy

85.   Spammers

86.   When someone says they don’t want dessert so you order your own and then they start eating yours

87.   Walking into spider webs

88.   Arguing about politics

89.   People who are mean to servers at restaurants

90.   Wet toilet paper

91.   Self-righteousness

92.   Peeling off wet bathing suit to go to bathroom and then toilet seat is wet too

93.   How squirrels look in the rear view mirror after you run over them (oops)

94.   Jerks who take up two parking spaces

95.   People who insult my integrity

96.   Slow pokes in left lane

97.   Runaway shopping carts

98.   Seeing young kids at R-rated movies

99.   Chasing after a ping pong ball

100.          Fingernail clipping in public

101.          Tip-stiffers

102.          Restaurant tables next to noisy kitchen or restrooms

103.          When people hurt my kids

104.          Cliques

105.          Four slow-walkers at a mall positioned such that you can’t get by

106.          Four slow-walkers on a sidewalk positioned such that you can’t get by

107.          When people call and don’t leave a message. What did they want?

108.          People who don’t celebrate the good in others

109.          Lipstick that goes through cracks around lips and runs up face

110.          Unsolicited advice

111.          Walking into a room and forgetting why

112.          Child abuse

113.          Animal abuse

114.          Poverty

115.          War

116.          Disease

117.          Violence

118.          Watching a loved one die

119.          Watching my child suffer

120.          Watching anyone suffer

121.          Tuberous sclerosis complex

122.          And finally, bird poop.

Who Knew?

Hey, Mom.

How's Heaven these days? Hanging with Dad? Dancing? Have you by way of chance bumped into Tracye Ford Sellers or Ann Earnest? Two of my favorite people in this life, taken away too soon, like you. Please tell them hello for me.

I'm just writing to say I had a eureka moment today! I've had others but I wanted to share this one. Felt like getting it off my chest. For some reason I only write in this blog when I'm sad or have had a thought-provoking experience. I prefer belly laughs, a positive outlook and good humor, but what the hell (or Heaven), right?

I guess you found out after making it to the feet of Jesus that I used to avoid spending time with you as a teenager and in my early 20s. Honestly, you picked on me a fair amount and I had little patience for it. Time has sifted the yuk and left for me only the twinkling eyes, infectious laughter and compassion for all around you. But you could be a pill, and so could I, so I wanted to be with Betsy, Lauren, Lisa and my other gal pals instead. Even when you were sick with cancer, even when I was working at Dow, I'd make the two-hour drive to Rochester Hills and go first to my friends' houses, spending the night with them before the next day when I'd see you. I thought you'd live forever--silly me.

Fast forward 30+ years and damn, how I regret it. They say that youth is wasted on the young, and without question "they," whoever they are, are right. Thirty years later I wish I knew more...about how you maintained your laughter in the face of adversity, how you made those ravioli just right, how you managed depression without pills (well, we all like to eat in our family), how you put up with Dad's moods and made it through to the end, fighting and trying and hoping and praying and holding on for everything it was worth. Jo-Ann said you could hear us in the end; I hope this is true. I hope you heard in the end how much I loved you. Jo-Ann also says a dream informed her you're painting on a beach and Dad comes by to visit. I don't like that vision, really, although it brings her peace. I think you're dancing and laughing and Dad is kissing you on the lips while you giggle and push him away, saying "You crazy man!" This is the mom my memory has sifted and left for me; the mom I wish to remember.

So my eureka moment: Who knew?!! My kids don't want to spend time with me. Mackenzie's a different story, of course, but the teenagers have other things to do. You were so needy of my time in the end and before I knew better, and it was SO annoying. Yet today, a beautiful, sunny fall day--Chris being in Taiwan again and me being here with them all...they'd rather do anything else than watch a Halloween movie or take a walk. Girlfriends' basketball games loom large while a walk in the sunshine is a big, fat bore. Some things are making me unpleasant lately, too (long story for an angel in Heaven) so who could blame them. God forbid if I'd get cancer, like you--I'd be a pain in both their asses, most likely. I am healthy today and have no reason to complain--but I am so sad.

Anyway, I understand better now...I really do...why you wanted me, why you needed me. I think I get the idea only now that when you invest your whole adult life in the development and joy of human beings you sometimes want to hold on..and on and on and on...long after everyone else has jumped the shark. You want to continue being their guiding voice, their soul mate...something, anything. Of course, it's healthy and right and whole that they move on, that they have their friends and that parents move aside. Even parents like me, who have worked hard to build a safety net of career, friends, interests, other things, so I wouldn't be, dare I say, like you, or how I perceived you to be when I was young. But damn, it's hard. Isn't it, Mom? I'm sorry it was so hard and I didn't know any better, even in the end. Who knew? Not me, not at all.

So today, they look at me with greater kindness than I ever showed you. Greater empathy that "Mom isn't quite right today for some reason," the "Gee, I'd be happy to hang with you, but you know, there are other things to do." The song Cats in the Cradle coming to fruition, and all that. Books, songs, sonnets have pointed to this moment in time, this day. Why I'm heartbroken, who knows.

There's nothing more to say than I'm sorry. I wish I knew better. I wish I asked you more questions or sought your advice on just about anything. But I knew it all and needed no advice. Some day they will surely say the same things, but I hope they don't. Maybe they'll be happier or more together. Surely I wish this for them. Maybe their safety nets will be stronger than mine--that would be a good thing, don't you think?

But today is a sunny, beautiful fall day and they have better things to do. So I'm crying and being a big, fat, ninny. Can you do me a favor and shine down here a bit? Put in a good word for me with Jesus about my broken safety net and the girls I live my life for? Have him remind me in thought or sign or somehow that these lessons do present themselves so I won't be such a ninny? There are worse things out there than raising great kids who are happy, healthy and independent. Logically I know this. Emotionally, I feel like shit. I never swore around you, either. :) Sorry about that.

By the way, I miss you.

Love,

Your daughter, whom who called your "baby."

MJ

Bad Day

I am sharing this only because it's been a bad day. A shitty day. I edit my feelings and comments when people inquire, so others see only the joy of special needs parenting. There is a joy and richness that cannot be described, but there are bad days. Shitty days. And so it goes.


Written to Summerhouse teachers:

Hi, All.

Can you possibly reinforce proper behavior at home again? We've had nothing but nonstop bullying, scratching, territorial issues and tension since yesterday. Examples:

• Karenna wasn't allowed to speak to me in my own bathroom last night. Mackenzie bullied us both for about 10 minutes by screaming and yelling, and then attacked Karenna by scratching. Five minutes later she repeated "I'm sorry" a hundred times, which is standard. It doesn't help and it is very annoying. If we don't say "it's okay" 100 times with her, the behaviors start up again.
• Juliette was not allowed into the den or kitchen this morning. She was forced by Mackenzie to stay outside in our patio area until I got home, whereby she went nuts when Juliette came back in. No attacks but constant verbal abuse.
• Mackenzie controls our TV in the den, although there are countless other TVs throughout the house. While I was getting my car washed, apparently she and Chris got into a knock-down drag-out because she would not allow Chris to show videos of his recent band engagement to Juliette and teenage friends. 
• Mackenzie commandeers certain seats and couches in the house and will not allow others to sit there.
• The house is always a disaster, with her losing her mind if i try to clean up her craft messes. She refuses to clean them herself. I cannot have a clean house, ever.

All of this is followed up by "I'm sorry, I'm sorry," and crying, etc., but these are hours, weeks and days out of our family life.

Besides the fact that these behaviors disrupt our home life and they are as annoying as hell, I know she must control her behaviors to some day live independently. Can we bring up these issues  EVERY DAY so she can allow us to have some peace?

Thank you for your love and devotion toward Mackenzie. I sometimes want to send her to a home because after 20 years I'm tired of all this tension, which is never-ending and ongoing. You remind me to focus on all the good she has in her heart, and I love her very much. I know she's a leader at Summerhouse and has good behaviors in her. But I'm exhausted and our family is exhausted.

Thanks so much!

MJ

Out Of the Closet

(Written two weeks prior to Valentine's Day, after attending church.)

Hello, all.

Sunday school was wonderful today. I am always refreshed for the week whenever I go, and Susan, you are a gifted teacher. My prayers to you regarding your mom...and to everyone who mentioned prayer requests today.

I am writing this note because I am a hypocrite. I left Sunday School once again feeling badly for not speaking up on an issue that is important to me; not being honest with my Christian friends on a specific belief.

In a nutshell, I am a supporter of gay rights and marriage equality. I know what the Bible says and I have considered it for many years; however, I have come to believe as I do by observing the lives of countless gay friends I've met and come to love over the years through the business and marketing communities, as well as in schools (Mackenzie's teacher is gay), our home (our sitter of seven years is gay), and in many other settings.

I may have kept this opinion to myself, but I have chosen to come out of the closet, so to speak, by posting a photo on Valentine's Day on my FB page at the request of a beloved friend, Trevor Eade. Not worth going into it now, other than to say it is in complete opposition to today's comments about homosexuality.

For this reason and some others, I am spotty with attending church. Some could say it is immoral beliefs that keep a person away; others may feel, as I sometimes do, that I don't agree with everything that is said, it hurts me or I feel like an outsider, so I stay away. Either way, it truly is between the Lord and me, and he is my judge. I hope at the end of my life he will look on me and know I did my best.

Thanks in advance for being kind to me despite this profound difference of opinion on an issue that is deemed critical to many on both sides of the fence. I do not lecture on it and, like today, I rarely comment on it. I respect other views and don't discuss the topic around friends' children. Please, however, do not try to change my mind or tell me it's okay to love the sinner...nothing will change my mind on this issue.

Chris doesn't fully agree with me, by the way. However, he knows Juliette will be in that Feb. 14 photo with me because of her support for her gay friends at school and he's okay with it.

God bless you and keep you, and thank you for your words of wisdom inside and outside the church. Thank you also for being outstanding role models on many levels. I just had to share this lest I be a complete and total hypocrite...I have lots of flaws, but hypocrisy is something I cannot live with.

Hugs & blessings,

MJ

The photo below was posted on on Facebook on Valentines Day, 2013. It received more than 115 likes and numerous comments, including a very supportive one from my sweet husband. There was silence and surely dismay from many more, but that's okay. We didn't do it for applause, just for what we believe is right. I'm proud of my daughter and grateful that finally, after 10 or so years of pondering it, I came out of the closet. 

Facebook caption read: My daughter Juliette Mudd and I support marriage equality! #TietheKnot With deepest respect for my LGBT friends including those tagged here...Happy Valentine's Day!! — with TonyCarroll BruceSmith and 23 others.