Team TSC & The Marine Corp Marathon

MCM_LogoMy running pitch:  I can’t even begin to explain to you how much running has been an elemental coping mechanism in my journey with TSC.  For better or for worse, I have come to running as a corridor of freedom in a world that has often been complicated, chaotic, uncertain and downright scary.  Time running has often opened channels of thought that enabled me to find ways to manage the stresses of everyday life as a TSC parent.  I have been a TSC parent for the past 22 years. I am not here to share my martyrdom or sainthood or insanity, because you all have your own stories. I just am sharing to give you a glimpse of the depth of my inner motivation to help bring this fundraiser to fruition and see it be successful!  

I’ve been on a mission since 2012 to run a marathon for and with the TS Alliance to raise funds and awareness for Tuberous Sclerosis Complex.  Tuberous Sclerosis Complex is genetic disorder characterized by the growth of numerous noncancerous (benign) tumors in many parts of the body. These tumors can occur in the skin, brain, kidneys, and other organs, in some cases leading to significant health problems.  As you probably know, I have three children affected by this condition and since kicking booze in 2012, have wanted to use my running ability as a vehicle of some sort to contribute to the cause.

I reached out to the illustrious, late Dee Triemer at TS Alliance in 2012 to see if they were an official charity for the Boston Marathon.  Selfishly, I wanted to jump into the Boston Marathon without having to qualify, as those on fundraising teams do not have to meet race qualifying standards in another marathon prior to gaining admittance to Boston.  Dee, of course, got right back to me after doing some research and explained that the application process to become a charity had officially closed for the year.

I stowed the idea and kept running, eventually qualifying for Boston marathon 1as an individual and running in 2016.  I managed my own fundraiser, focused on the same idea, raising funds and awareness.  It was a success and I was somewhat content with my efforts. Somewhat content. Runners are essentially maniacs and soon enough, I was hankering for more.  So flash ahead to early 2017. I was reading my TS Alliance magazine, Perspectives, and saw a blurb recruiting runners for upcoming NYC Marathon! The first official Team TSC! My initial reaction was one of frustration.  Why hadn’t I known about this until now? Complete ego trip. Now the TS Alliance was officially doing marathons and I wanted to be a part, dammit!  While the timing was bad to get involved in that cause, I did not give up on wanting to be a part.

I had this foreshadowing that I would be running in the Marine Corp Marathon at some point in the near future. My little brother, Col. Jason Woodworth, and his family, will be moving to DC in July and my oldest son Woody, and his wife Chelsey (both runners) also live in DC, so there’s that.  Anyway, following my intuition, divine guidance or just wanting to see my family in October 2018, I emailed April Cooper, Director of Community Outreach Programs at TS Alliance, and lo and behold, we exchanged emails on the eve of the deadline for charities to apply for groups of entries in the upcoming 2018 race! However, the smallest number of spots we could apply for was 50. That meant we would have to get 50 people signed up to run for Team TSC and commit to fundraising a certain minimum dollar amount. Which I”ll tell you now, is a very reasonable $1000 bucks per entry.

I thought, of course “no probs! we can do that easily”, and I told April that I was completely confident we could get that many people to run for Team TSC.  She had her own connections to this race to motivate her to take the plunge, and we got the 50 spots to fill! Yayyy!! Then, Oh Wow!! and 50!! Oh Boy!!

Let’s just say I was jubilant to be a part of this new project and was ready to throw every ounce of energy I could spare to help pull this thing off.  Boy was I naive. Since then, I’ve learned what a huge effort behind the scenes this was going to involve, and at a volunteer level.  It was going to require more time and energy than I really had to spare, but as I’ve said, this is a calling. I was down with it.

What’s become apparent to me as we are going full steam ahead now, actively recruiting runners to run for our cause, is what a big ASK this really is and how far out of my comfort zone I was going to be catapulted.. And maybe that’s the lesson, for me. I’ve been reaching out to ask for help from just about every corner of the many chapters of my life in trying to help get TeamTSC off the ground. If you knew me when, or know me now, and I haven’t contacted you, watch out. It’s coming.  

As a part of our family’s journey with TSC and the multitudes of challenges these kids have faced, I let go of many of my old connections.  The cyclone of trauma and tragedy we all experienced in managing the manifestations of this condition for years and trying to survive had taken its toll on me personally and connections have fallen by the wayside in the process.  It has been so bleak at times, that all that seemed to matter, was what was relevant to survival in the immediate day. I’m happy to report that things have slowly gotten more stable, manageable and brighter, yet still, I resisted reconnecting with many past supports.  

I will add this for other TSC Moms, caregivers, anyone affected by a diagnosis such as TSC. There’s already an inherent level of vulnerability felt when one has to continually ask for help seemingly daily, in finding and securing the services and supports necessary in the management of this condition.  It can leave a caregiver feeling emotionally exhausted, marginalized and without a shred of interest in making any connections except with those in one’s immediate circle of supports. Financially, it can be unbearably stressful as it can be almost impossible to work outside the home, due to the sheer volume of necessary and often emergent appointments alone, not to mention medication management, IEP and ISP planning, and meeting, etc, I could list pages. It leaves one bereft, winded, beat, shut down, cut off and isolated.

Enter Team TSC. TeamTSC_Logo-FINALRegardless of prior mentioned inhibitors,  I have forced myself out of my comfort zone, almost daily, to reconnect with old connections, to put aside my own insecurities and vulnerabilities and push forward. Just as so many of us must, as TSC parents.  I’ve started going to fun runs at a local sneaker store, I’m training with old competitors and starting to get involved in some local running groups, I must have emailed the team with whom I am working at the TS alliance shamelessly, daily often, with ideas and suggestions. I’ve peppered some of my closest friends, not to mention my partner and kids, with long-winded conversations regarding my mission and I’ve gotten my son Jack, running daily which is a huge accomplishment for him. 

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Team TSC local!

So, friends, family, connections, readers far and wide, I’m here to thank you for already being a part of Team TSC because in so many ways, you are.  What I’m going to ask is that you spread the word about this incredible fundraiser that has the potential to blast open the doors on not only fundraising but awareness and connections around the country!  That is my vision for Team TSC.

If you are a runner, or were a runner, go to a gym or fitness club where there might be runners, consider posting our flyer and talking up this opportunity!  We already have 10 people, at last count, signed up to run but we want FIFTY. Fifty is nifty! We have a phenomenal Team at TS Alliance and my fellow Team Ambassador, Ryan Novotny, brings his legions of marathon racing and training as well as military experience to us to keep us on course!  A big team, sharing our stories and supporting each other as we train and fundraise for this grueling event, which could be the best, most broadening, out of your comfort zone experience you might ever have. And come on,if you’re involved or impacted by TSC already, you already are familiar with the out of the comfort zone feeling, so why not go one step further and help us out!!

 

Thanks for reading and here’s where to go for more info:

Team TSC-GO SIGN UP OR PASS ALONG:

 http://giving.tsalliance.org/site/PageNavigator/TeamTSCMCM.html

Email info:  Me, pjlacy6@gmail.com, crbnovotny@gmail.com

TS Alliance:  acooper@tsalliance.org

Tuberous Sclerosis Complex:  http://www.tsalliance.org/about-tsc/

Facebook page:  https://www.facebook.com/TeamTSCMCM2018/

To Donate:   http://giving.tsalliance.org/site/TR?px=1074502&fr_id=1526&pg=personal

 

Posted in #IAMTSC, addiction, autism spectrum disorder, epilepsy, Infantile Spasms, marathon training, medical conditions, parenting, Ram Dass, recovery, special needs, tuberous sclerosis complex, Wheaton College | Leave a comment

Dear Wheaton College,

Hi Fellow Wheaties, class of ’88,

wheaton-college-signI got my 30 year college reunion magnet along with a written invitation in the mail recently, thank you very much! I slapped that beautiful magnet covered with a fall array of colors right up on my fridge, almost without even thinking about it.  Every time I get something from Wheaton College, my alma mater, aka, you guys….I get a bit of a low level angst and irritability, peppered with stabs of conscience. While I have been brushing these feelings aside over the years, and the weight of judgement and failure that can come with, I cannot seem to keep it under wraps one more minute. I hardly feel a Wheatie! More, a “fallen” or better yet, “falling” Wheatie. Your religious mission, “For Christ and his Kingdom” has been a life long thorn in my side.

I graduated from the good ole, blue and orange, described as the “ Harvard of evangelical schools”, having had a truly wonderful, life changing but also extremely limited and narrow college experience, I was bound and determined to stay on that high and narrow path of evangelical Christianity.  Hell, I even got married while I was there.  I tried and tried to follow the rules, as set out for me biblically, until I didn’t.  Until I fell.  Into divorce, twice, into the lovely charms of alcohol, and other forms of addiction, and well, all sorts of other segways off the beaten path, which have made this lifetime at times equal parts challenging beyond belief, but as well, delicious and worthwhile, in the wisdom gained from many falls and many awakenings. 

I so dearly want to join the bitter and disheartened bunch of us that couldn’t stay on that narrow tightrope. We who have fallen or are falling, who strayed from your course, at times resort to bitter backhanded discourse about how ridiculous you Wheaties are and how glad we are that “we” have evolved as humans to understand that there is more to faith then these continual reprisals of fear based reactionary events.  But. I can’t. Because what I’ve learned in my falling down life, is there is no “us” and “them”, there is no difference between us at all, despite our past clutching to the cause, Christian, non Christian, Buddhist, Hindi, really any set of religious beliefs. There is just clinging to belief and then there is faith.  Faith in the unknown, in uncertainty, in the willingness to admit we just don’t know for sure and that is A O.K.  Faith in the power of love, I pray, daily, minute by minute some days.

The college needs to know that the rest of us that don’t show up at the reunions and who may on occasion, slam Wheaton on social media, or elsewhere, and have somehow “fallen” into a life of which our dear old Wheaton establishment, would highly disapprove, are still alive!!  We’re still getting the refrigerator magnets, and letters and such, that we often resent.  We have much to offer!

As Jesus met the woman at the well, so must you, dear ole’ Wheaton, find a place for we “falling” Wheaties, who may in some way, embrace the path of Christianity, but do not see it as exclusive, but inclusive of a greater whole.  We who have accepted heaven in the here and now,  born again in each moment of choosing love over fear as the portal to a life with abundance now and ever after.  We who are falling and don’t care to get up.  It is your mission to find a place for us too, not because we need to come back, but because you need to come back and make room in your hearts as equals, sharers in the keys to the kingdom.  We are here too. Humans. 

I hope the reunion goes smoothly.  In love and faith,

Jill Woodworth, B.S. 1988

Posted in addiction, Buddhism, Wheaton College | Tagged , , | 5 Comments

What Tuberous Sclerosis Complex taught me about love

I had to go in my daughter’s room today. I found myself on my knees in tears. She is 22. She is moving out soon to shared living. It is a really great opportunity for her in what’s turned out to by quite a serendipitous match.  It is still so hard to let go. Walking into her room, I see the evidence of a 22 year old woman in about a 13 year old girl’s mind with schisms of brilliance, intertwined with many tiring days of multiple interruptions and continual mind grinding frustration on both our parts at our mutual lack of ability to make anything stick within a reasonable time frame, so she can forge her way more independently.

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It’s been tough to stay hopeful. It’s not her fault.  And maybe that’s just our history, our history influencing my vision of her.  My ex mother in law did say it would be a tough go. That was when she was about 11 months. My father, who was losing his mind at the time, even saw it, that she wouldn’t listen to me. At all. As her mother and truest believer in my daughter, I still believe. She’s been my raison d’etre and now I am handing her over, just like it almost never happened and they’re starting at square one with her.  The shared living match.  I’ve come to accept that she is who she is as much as she is carved from my heart of hearts, she has also been tough to care for, and I’m telling you, this past year of working with her on following rules, has been a humdinger.

But I digress.  I had to go into her room to look for hazards, a frequent part of a routine started because of multiple incidents of burns from curling irons, nail polish catastrophes. Fairly recently, we were in her room and discovered that she’d taken some stimulants that are prescribed for her brother.  It scared me a bit. She had never done anything that deliberate and that extreme. I came to understand, that it was mostly just so she could stay up late at night. It triggered memories of my past addict proclivities, and was a somewhat horrifying review of my own past behavior, and all it’s inherent harms and damages.  Ouch.

She loves to stay up late at night, and party.  Plain and simple. She gives her all every day and by about 8pm she is done.  D.O.N.E. But, she also likes to be alone in her room and do the kinds of things she enjoys and which comfort her.  This may involve high pitched squealing, singing, rocking, making videos, taking pictures, printing things on printer, if possible, maybe even cooking and showering. Boundary less.  I don’t know.  Anyway, she wanted more.  More time to have her own kind of fun, so she grabbed the pills

The pill escapade actually turned out to be a good thing because it got her on the escalated radar of the DDS and shared living seems to be the path.  While initially quite reticent, I have come to see that it might work. It’s a letting go on many different levels and I am happy for her and I hope for the best.  She has come so far from that little girl who had to spend 3 hrs a day, as a 3 year old in ABA therapy.  She was locked in a chair, working with a therapist extraordinaire, that cracked her code and had her conceding to finally use the English language. By then, she’d already made up her own language that involved over 100 words combined with the point and pull method of communication.

Her TSC diagnosis was the linchpin for the entire breakdown and recovery of our family’s hopes and dreams, shattered and repaired repeatedly. I am grateful for all the lessons of tough love TSC has taught,  painful, unfair, ugly as hell. We could not have survived had we not found new lenses daily, to see the gifts of this ongoing daily struggle dealing with what this disease represents and reflects so poignantly.  That with which our own country and the world at large is faced.

We must not turn away, even on the darkest days, when everything seems black. We must sit in our anger, pain and discomfort for long enough to understand that we have the power, even if only to scream ”help” at the top of our lungs, fall to our knees in despair and confusion, and accept that this too shall pass, light will come. And it has.

So off she goes, with much fear and trepidation, I surrender her to the path, whatever path that may be for her.  We have tried our best as mother and daughter, as mother and daughter’s do, and a deep love will always connect us. As tears stream down my face, and I think of how quiet it will be when she leaves, I know the time has come.  Onward sweet Mary Ellen, it’s your turn!  Go live. I love you.

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Posted in #IAMTSC, autism spectrum disorder, epilepsy, Infantile Spasms, medical conditions, parenting, special needs, tuberous sclerosis complex | 1 Comment

Precious Moments~by JD Brigham

Spear_2299So, funny story. Stop me if you’ve heard this one. Some of you have. When my boy was about 8 months old, about that time children start to mimic what you say. You say “Dah Dah” he says in his 8 month old angelic voice, “dah dah”. Lovely. It was just coming up on his 1st birthday, I think. Maybe 2nd. I thought they talked before 2. Oh, and there’s a blow dryer powered Santa. He comes back around later. I digress.

So it’s the day of a crazy storm. We musta got 10? And that was just that morning. I headed out to get the kid from daycare. We gets his boots on and hugs goodbye, and down the road we go. Woo hoo. It was then I saw her.

She was waiting to pull out. Maybe she lived there. Maybe she just robbed it. (Her car was nice for a robber, but maybe she was good at it.) She looked me square in the eyes and pulled out in front of me.

I panic. I’m coming in -hot-. I’ve been here before. I know what’s going to happen. The sound of crunching metal. Any second. Any second…. Any second?

Holy shit, thank you anti lock brakes and aggressive tread mud and snows. I had 1/2 an inch to spare.

As I’m shaking it off I look and she’s looking at me in the rear view mirror. Perhaps wondering how I managed to avoid turning her trunk into an eggo. So, I very carefully mouthed out to her exactly the impression that kind of driving has on someone bringing their very small child home from daycare in a snowstorm.

Fucking [badword]

(The badword rhymes with what football teams typically do on fourth down when they are too far away to kick a field goal. I’m not proud of it. I used to partake of that word profusely, but have learned that it’s not very nice and has bad connotations. Ignorance is no excuse and I will beg forgiveness some other day. Point is, I knew how bad that word is when I used it on her, making it even more insulting in my opinion. Which is why I used it.)

And then what do I hear from the back seat? He even got the emotion right. A beautiful, angelic, 8 month old “Fucking [BADWORD]!” Turns out I did a little more than mouth it. At once I start laughing. It’s kinda funny to hear that, all angry, from an angelic little person voice.

Then I realized the implications. It would have been clear to anyone close to the situation that he did not learn that at day care. Nor would it be something he’d pick up from his mother. Nosirrree. There was only once place he’d learn that foul shit.

Daddy. And he’s laughing. Rut Roh Raggy.

I got about 4 deep into the ways his mother would kill me, all slow and painful. One involved vise grips. I know right? Where’d that come from. I don’t know.

I panic again. That’s twice in the space of 10 or 15 seconds. Life happens fast. And I am scrambling. I’m that kid in A Christmas Story when his mom shoves soap in his mouth and wants to know where he learned the F bomb. (The mother of all swears? I beg to differ.) I am in a hole and there is No. Way. Out. What do I do what do I do what do I do what do I do?

Then I see floopy gyrating needs-methadone blow dryer Santa. And I say “Look Buddy! It’s Santa! Have you been good?” And he says, “Jakey good SANTA!”

(Is that light I see? Don’t kid yourself bub. You’re dead, you just don’t know it yet. )

“Look at the sun! Pretty in the trees, right buddy?” “Pretty in TREES.”

(Is it really real? I might live to see 35 after all.)

Then I broke into “We Wish You a Merry Christmas” and he tried his best and bobbed his head.

(35, here we come.)

He never said it again, at least not in front of me. And it was a merry Christmas. Everyone.

The End.

Posted in parenting | 1 Comment

Special Needs Mom.

I am a mom with lots of special needs.  

I’m irritable, exhausted….with an extreme sparsity of emotional energy and nothing positive to discuss. I feel all alone at time, charting unmapped territory.  It’s as if I’m a early frontierswoman, navigating this new country with merely a good horse and load of chutzpah, no road map or directions, no course of navigation set before me. The well being of these humans is somehow placed squarely on my shoulders.  While no one does it alone, it often feels that way.  I admit, I took it all on, ran head on into it, surely sure of myself as if for sure I knew what it would look like, raising special needs kids, hell any kid these days. It was all pure bravado, youthful fearlessness, tempered with a pinch of spite born of desperation.  I have often felt that lingering bit of contentious motivation, that of, “think I can’t manage all this and my other parenting, partnering and personal responsibilities??  Yeah?  Just watch me….”  and that is the facade that has been slowly crumbling over the past year yet here I stand, steadily enough, with the power to reflect, understand and now say, I still don’t know much.  It seems trite but true, that the more I understand about how to navigate in these tumultuous, tempestuous times of doubt and uncertainty, the less I know.  So, before I forget why I’m writing this blog, because I have to remember something else, here’s what I know today.  Use it if you can.

 Just bust out. And run. Or walk. Or something, just break a good sweat.  You’ve got to move it Move it! Most every morning, I bust out for a run.  My best suggestion for this is to make it a daily practice,  commit to it.  I unplug, break a sweat, get out of or into (depending on need) my head.  Some days, I’m all Eckhart Tolle and Ram Dass podcasts but others are ac dc-Highway to hell, run flat out as hard as I can.  I’ve noticed controlled physical exertion induces a sort of release of deep emotional pain.  The kinda angst that some of us special needs mom, sometimes have.   Forced focused attention. Meditation? Yes. I find if I don’t make time for this most days, I suffer.  

Work together.  With everyone as much as possible.   Include all medical professionals, social workers, IEP team. ISP team, and any other caregivers such as respite workers, mentors, extended family members, exes,  etc, in communications.  I’ve found group email to be an effective tool, if properly used, to communicate among the mass of professionals caregiving a TSC kid requires.  Google surveys are another way to glean and share pertinent information with a particular population. What’ I’m finding is that the lack of communication between professionals working with our children is phenomenal and proactively fostering communication between them at times feels like reinventing the wheel.  This is one of my biggest beefs as a parent and caregiver and I don’t really think there’s anyone to even blame so creating tools, looking at my processes, getting organized are things I can do to avoid the pitfall of feeling like helpless and overwhelmed.

 Ask for help.  I really dislike asking for help.  I was going to say I hate asking for help but hate’s a strong word.  What I dislike is the vulnerability involved.  I find this a bit ironic as any successes I have had in bridging the communication gap, gaining new information, making new connections has only been because I did exactly what I dislike, that is, I reached out and asked for help.  Ugh.  It hasn’t been that bad only that I have to keep doing it.  I thought maybe I’d get to a point in life, in parenting, in special needs parenting, etc, where I would really know enough to not have to ask, but dammit, over and over again, I must.  As I’ve gone along, I’ve found behind what often seems like a closed door IS a closed door because these agencies that I’ve had to rely on to get the services needed for my children often don’t communicate very well either.  But I persist and am slowly learning some of the ins and outs of what and who to ask, where to look, etc.  

Laugh.  Hard.  Great big belly laughs.  I was going to say cry too, and I mean that, don’t hold emotion back.  Laugh at yourself, your situation, your facebook feed, Donald Trump…. gallows humor or political humor. Sponge Bob or South Park.   I pray daily for the light of laughter to fall upon me in my most excruciating moments of self doubt and fear.  It’s the letting go, and knowing that it will come if you make room, open the window and let your funny bone be tickled.

I will say all this is exhausting.  I want to be more positive but I am frustrated.  It is a black mirror of what is going on in our country as a whole, this fundamental disconnect within our healthcare, social services and behavioral healthcare systems is just another symptom of a fragmented and confused society.  While technology and modern medicine have brought many beneficial new treatments, I still believe we must find way  to use these advances in  medicine and technology  to integrate all systems  needed by our special needs population if we are to honestly embrace progress.  If we cannot prepare this part of the population when they are young and give them whatever tools they are able to access at their respectful levels, while preparing them for as much independence as possible, we are doing ourselves and society a disservice and the burden of care will be a continuing mounting concern . We must work to find a place to build a society where everyone fits, everyone contributes and everyone has a chance, any less is an inhumane response.  That is how this special needs mom sees it.  Let’s get going.

 

. .

 

Posted in addiction | 1 Comment

Lost at the Big Y, STUCK at Walmart. A rather long rant.

When my son Jack was around age 3-4, he was a bolter. I mean a runner.  A dasher.  As in Dash from The Incredibles, dasher.  And fast!  The kid would just flat out beat a trail away from me at the drop of a hat, regardless of the location, time of day or weather status.  It was terrifying. If he got out even at home without me being aware, which happened a time or two despite some rather rugged childproofing efforts, he’d bolt straight for the road. Straight for it! Not even a chocolate ice cream truck parked directly in his path would stop him.  Something to do with the cars.  He’s got a deep fascination and love of the automobile, and apparently, he wanted to try out his “wheels” at every possible opportunity, plus just the sheer fun of running away from mom.  What came next was, I’d have to initiate my own mad dash, full throttled sprint, in order to grab him by the collar and yank him back from the road in just the very nick of time. These emergency sprints, clearly, became a bit wonky and wearying, as time went on, and we made some adjustments to insure his safety at home, but I still had to go out and get stuff done.  Buy food, for instance.  

So, I was always playing the odds with Jack, as we parents tend to do at one point or another.  Don’t we?  Honestly.  We have to take a freaking chance just getting our newborn infant home from the hospital.  Tell me they have a better system for this now.  I remember riding with my hands reaching forward to keep my poor newbie’s precious head from bobbing around in the ginormous car seat, despite the extra padding I used. So hush now. Playing the odds, at the Big Y, our local grocery store, I just pretty much just full on committed  to knowing Jack was going to run away at some point during the visit,usually within the first 5-6 minutes. Not that I was timing.  Most of the first 5-6 minutes were spent risking severe mortal back injury getting him into the cart in the first place, and not even the car seat part of the cart.  I’m talking the cart cart.  He was strong as an ox and thrashing wildly.  It was a game to him. Five minutes of a fierce wrestling match of me plying him with treats or physically re-positioning him in a sitting position with some sort of admonishing platitude about staying seated.  Silly, in retrospect.  Like any of that would work.  Eventually, after the 5-6 minutes were over, I’d put him down and off he would go, gently, almost timidly, fading out of eyesight down the aisle, as I accelerated my pace as if in concerned pursuit (I’d mastered the look), but more in an effort to speed shop along the way while “looking for him”.  In some time, he would be spotted by a sympathetic store employee, recognition would set in, and Jack would be returned to me, hopefully, as I was just about rounding the last aisle of the store, headed in for the final leg of this exhausting journey, the checkout line.  I then bribed him with candy.  We had to get home, after all.

I am eternally grateful to the staff of the Big Y during this time period of my life, when there was no other way on earth that I could do my shopping.  Heck, it’s probably always been a win win with the Big Y.  After all, I’ve spent a boatload, maybe a full yachtload of money there over the years and they probably knew they’d have me for the next 20 or so, as they’d seen my kind before.  You know, bedraggled, careworn newish mom, bleary eyed and oh so desperate to parent these young kids, she’d do anything to survive.  Anything, including and up to investing ungodly amounts of money on the whim that over the next 20 years she’d be able to insure the survival and thrival of this rambunctious and unruly bunch.  And thusly, I was bought.  In not many other venues, however, would I have taken such a risk, so there was my win.  Small town values and all.

Anyway, one of my local friends who sympathized with my plight, had seen my plight in the form of Jack and had babysat my plight, on a few occasions, suggested I try a leash. Glad to say, we’re still friends.  My initial reaction was one of mottled horror combined with perverse curiosity.  I had heard of these things…..basically long, reinforced elastic bands that attached to a child’s wrist, though now I’m told they have more of a harness apparatus.  Go figure.  You can stop reading now and guess the rest, but I promise, if you keep reading, I’ll be funny.  And back up the bus, yeah, you heard me, elastic bands, as in rubber bands.  Think Elastigirl.  The Incredibles.  Yup, second The Incredibles reference.  Alas, I digress.  Back to the leash.  I mulled it over and over in my head for maybe, oh, just shy of 5 seconds, and as much as I dislike the “inhumane” nature of the thing, I was dealing with the “inhumane”.  I keep hearing from some media leak that a 3 year old child has the intelligence of a monkey or an ape. As it turns out then, inhumane is dead on. I’ll put my monkey on a leash. Yes please.  So the day came when clearly, I  needed to go to WalMart. We needed items that extended above and beyond the grocery store’s reach, things like play doh and bras.  I just chose those two items for no reason.  Promise.  Other than I’ve never seen them for sale at the Big Y.  Yet.  That’s a clear yet.

I counted on the first five minutes at Walmart, lead time to get Jack into the cart and into the store before placing the leash on his wrist.  Fortuitously, I caught a bit of a break as he was a titch distracted looking at the new thing that was restricting his full range of movement.  He studied it with only the curiosity a three year old boy can summon.  That of laser focused concentrated attention combined with a twinkling eye, ready to “investigate” aka “rip apart” or “break” at any moment.  A challenge I say Mommy!!! Then, of course, it was go time and it was off to the races in Wally World.  Walmart.  The land of plenty.  Big Fat America.  Wheeee…….

This was a harrowing adventure like none yet in my parenting experience and I thought I’d seen some shit.  After all, I was in my 30’s now, and had a son that lived with his dad in Colorado, and two more daughters with my (then) current husband, that had some unique challenges.  Never say that to the universe.  That part about thinking I’d seen some shit.  A mere harbinger of things to come, that is for sure.  Off Jack went, on his leash, pulling me in tow. Within seconds,  he had realized the new restraint was not completely limiting and was encircling precariously placed piles of various Walmart goodies, weaving  and dipping in and out of displays with some natural athletic ability, grace, and finesse, mostly grace. Picture me now, frantically trying to keep pace and bend and weave with him like a human shield, Elastigirl combo.  It worked.  But this trip was not working.  Not a single item was in my cart, which I’d long since abandoned, like a scene right out that beaut of a movie, with Kirk Cameron, “Left Behind”.  I’d abandoned ship completely. Forget the cart. Forget the whole trip.  All I wanted to do was keep up.  All else was a luxury.  I think I remember vaguely, as these memories are vague at best, but I think, next came the entanglement and almost disabling of several store customers. That was fun.

Either Jack could sense my mounting distress (doubtful), or he considered that since he couldn’t completely get away from me, he had to make his next move, or neither.  He was three.….talking (barely) monkey.  While I was recovering from the customer entrapment debacle, I stood up in an attempt to  pull some shred of dignity out of my ass.  I noticed that Jack was now sitting down.  Befuddled, I paused for a moment, only to see him raise his little (albeit strong) three year old arm straight up in the air, like a flagpost, with leash attached and yell, “STUCK!”, and then, “STUUUUUUUUCK!!!!!”   and again and louder, “STUCK STUCK STUCK STUCK”, rapid fire style, staccato.  Boy did this get some attention.  And how!  I’d learned many years before, when out in public with one’s young children, particularly those that might be a bit on the autism spectrum, or a bit on the shy quiet spectrum or on the healthy boy spectrum, or whatever spectrum, (they’re kids, after all).never, never never ever (got that?) make eye contact.  With anyone.  Unless that anyone is a significant other, another one of your own children, or your mother, or maybe the president.  Of the country.  Not the store.  Duh. That’s it, head down, nose to the grindstone.  This is the task of all good parents, straight on from the get go until well, in some cases, and maybe even beyond, six feet under.

Back to Jack.  I tried to drag him for a few paces while he was sitting, just to save face.  I still needed to save face.  Makes sense. Face must be saved at all costs.  Especially in Walmart. Then I just gave up. Quit. Done-a-rooski.  I was done in Walmart.  I could take no more.  Shall I continue?  Jack was sitting, I was militantly not making eye contact, with anyone, even those that might have been on the list I mentioned before that was ok.  None of them were there anyway, with good reason.  I hadn’t told them I was doing it. Trying out this leash thing. I didn’t want to hear any nay-saying or hating on my idea.  No sir.  I wanted to give it a shot, it all being a crap-shoot anyway.  Where was I?  Oh yeah, quitting. We had nothing in the cart.  Oh right, we had no cart.  I saw the writing on the wall, I really did.  The next step would have been being asked to leave.  And this had never happened to us, not even at Big Y.  So we left, he and I, somehow calmly.   It was going to be a long tearful ride home in the car.  For him, of course.  Not.   He had forgotten about it and was gleefully looking out the window at his friends, the other cars.  Me?  I surely lost a few lives on this trip. I might have cried a bit, but oh who am I kidding,  I probably just had some tears in my eyes. Or not any at all.  I was pretty well  medicated back then.  Out of necessity.  That is another blog.

Yesterday morning, I had to take Jack for some blood work.  I sprung it on him first thing in the morning, otherwise he wouldn’t have slept much.  I knew I was asking for it, but what was I supposed to do?  In my experience, the less time he has to perseverate on some upcoming event, the better.  We argued a bit and he didn’t want to go.  I couldn’t blame him.  No one ever says, “I want to go get a blood test today”.  I had to press on.  Back and forth we went over the many miles of mother son terrain. All fairly calm by any measure, especially after the rather raucous essay with which you were just presented.  We’d both traversed so far in our relationship over the past year or so. Now I definitely spring a leak from the ole’ tear duct reminiscing on this one.

Yes, it was rough getting thru that, but we did and here we are now, and no one is completely stuck anymore.  Even though no one ever really is completely stuck, except within the limits of one’s own mind. That’s a deep thought I just laid on you, that last one. Try this one… If it takes sitting down wherever you are because you are too frustrated to go one more step forward and if it takes screaming at the top of your lungs, “STUUUUUUUCK”, then so be it.  We all need a little help from time to time getting unstuck.  All of us.  And if we don’t think so, we’re either in denial or we’re maybe the Dalai Lama.  The Dalai Lama never met Jack.

.

Posted in #IAMTSC, addiction, autism spectrum disorder, Buddhism, epilepsy, medical conditions, parenting, special needs, tuberous sclerosis complex, Uncategorized, Wheaton College | 1 Comment

Infantile Spasm Miracles

“Infantile spasms (IS) is an age-specific seizure type that occurs in 1 out of 2,000 children from many different causes. Tuberous sclerosis complex (also called TSC) is a common cause of infantile spasms, with IS affecting about one third of children with TSC.  The infantile spasms are most often seen in children between four and six months of age, although these seizures can begin anytime in the first two years. Rarely they are seen in older children up to age 10; at this age, the seizures are called juvenile spasms.

Infantile spasms are often mistaken for other conditions. Yet, prompt diagnosis and appropriate treatment of infantile spasms are critical, because children may stop developing normally or even lose skills soon after the spasms begin. Significant intellectual disabilities may also be seen if the seizures are left untreated. Swift and effective treatment may provide the best developmental outcomes possible for a child with infantile spasms and for children who also have TSC. “

Watching and waiting. Day by day.  Watching their eyes and wondering if it was going to start happening, wondering when it might happen, a mother’s intuition on steroids, call it.  It’s existing on a different plane of reality for some time, one where all that matters is making sure  you catch the subtle eye movements, the mild body movements and are prepared to immediately call the neurologist.

The first time we noticed it, we had no idea what was going on, only that something wasn’t quite right.  Her eyes were pools of water and they kept kind of rolling upwards in her head.  Her arms and legs would kind of lose muscle tension and collapse a little, as if she we’re bowing to her knees.  All I can say is it was weird and a bit terrifying.  We were ready to film these spells, and had an appointment with the neurologist when a regular old seizure landed her in the ER and the TSC diagnosis was made. It took awhile before we discovered what these other odd eye and body movements were and it was clear from the look on the neurologists face, after an EEG, that the news wasn’t good. As in very bad. Prognosis for future?  Cloudy with a likelihood of big trouble.

I was then working at pharmaceutical research as office manager.  The company I worked for hired research associates, who where generally young college kids, to do some of the heavy lifting of the sort of research needed for their studies. So when it was learned of the struggles we were having with our infant daughter, those research associates went to work tracking down information on this particular type of seizure and any available treatments. Turns out, one of the research associates was from Turkey and her father owned the company that manufactured Sabril, also known as vigabatrin, generically.  This, at the time, was about only possible treatment that had any long term potential to stop these life limiting seizures.  Shortly thereafter, I came into the office to find multiple boxes of Sabril, on my desk.  For free. God’s hand, fate?  Well grace anyway…. this was 1996.  The FDA had not approved use of Sabril (vigabatrin) in the United States. A side effect of narrowing of the retinal field of vision had kept it restricted.

Our neurologist at the time, when informed of our acquisition of the Sabril, did a happy dance around the office.  No lie.  He was so excited.  He knew about vigabatrin but as it was not FDA approved and he had no clue how to get it, he hadn’t mentioned.  He was more than willing to advise me on how to administer.   Within a week of starting the medication, Mary Ellen’s Infantile Spasms stopped and never returned!  Miraculous!  I am reflecting on this particular series of fortuitous events more than ever lately as I stand at a place of frustration with the multiple meds my kids have to take now for aspects of their TSC.  So remembering helps.  And remembering holds the hand of being overwhelmed with the infusion of grace that touched our lives and paved the way for the quality of life all three with TSC have now.

I was able to identify the start of IS in my other two children with TSC, probably within hours of the visible signs starting.  I had been perched waiting, watching, with eagle eyes since their birth.  Knowing of this potentially loaded gun of Infantile Spasms, was probably around any corner… and I was ready, phone in hand, to call the neurologist.  It happened with both Sara and Jack and by now, we were able to get the medication from Canada and twice again, the Infantile Spasms were stopped.  Ahhhh, the miracles of modern medicine.

Now here were are in 2016 and the FDA approved the use of Vigabatrin for the treatment of IS  in 2009, in no small part, due to tireless advocacy in good part from the TSC community.  It’s hope in a big old bucket and over an over I am grateful to have been on the receiving end of such a fortuitous miracle!

Posted in #IAMTSC, #ISAW2016, autism spectrum disorder, cannabis, epilepsy, Infantile Spasms, medical conditions, parenting, special needs, tuberous sclerosis complex | 1 Comment

My son Jack was concerned recently that he had acquired Tetanus. Lockjaw.  He locked down on this notion and obsessed about it to the point of not being able to eat or sleep, was having trouble functioning at school and struggling to do anything besides sit in his room and worry, worry, worry about the non chance that he had Tetanus.  He trudged to the school nurse three times yesterday concerned that different parts of his body were manifesting symptoms of Tetanus.  He came home and whipped his shoes off and threw them on the floor because they were bothering his feet in such a way that the blister created by them meant he might have Tetanus.  There was no listening to fact or reason. We tried.  His teacher tried.  It seemed almost the more we tried to explain and elaborate on the cold hard facts, those being that he had not done anything to put him at risk for Tetanus and nonetheless had a Tetanus shot in 2013, the worse he got.  He was knocking on the door of my room periodically to ask if he had Tetanus and I had to repeatedly, calmly reassure the poor kid, that he did, in fact, not, have Tetanus.  It was equally hilarious and sad.  I had to bite my tongue at times not to giggle, yet one look in his haunted eyes was quite enough to bring me back to full on compassion.

I was honestly stumped.  I’ve been dealing with docs and meds and multiple issues related to childrearing kids with TSC for quite some time and it had been a long time since i was completely stumped.  As in, I didn’t know which course of action to take, which doctor to call, what to say to his therapist, etc.  So, I contacted them all and explained it all to all of them, and risk being thought of as Jack Lacy’s ranting mom.  I got answers.  Pretty quickly. And in time I was able to piece together what might be going on for Jack.

He’d had a seizure, out of the blue, a few weeks back.  He came out of it easily and we were able to backtrack and figure out the probable cause and come up with a treatment plan, which was, to increase his seizure meds.  However, despite the cheery treatment plan and increased med,  it still freaked Jack out.  For good reason.  Poor kid is going along with his morning, at his dad’s, excited about going to Boston with his cousins who he rarely sees, and next thing he knows, he’s coming to on the floor and waiting for the ambulance. Scary stuff for a 15 year old.  Especially in light of his recent progress therapeutically.

Jack has grown over the course of the last year from having exceptionally intense anger outbursts that landed him in a Community Based Acute Treatment Program twice, to being able to face his inner turmoil and come to a pretty good understanding of himself and others.  No small feat for anyone, let alone a kid with some exceptional challenges.  This psychosocial growth has also stimulated more inner awareness, which was coming full circle.  He kept asking me post seizure, if he was going to die.  Now that’s a tough question to explain to a kid.  Well, heck, sometimes to anyone, including myself.  Simple is best with Jack, and so I told him that no, he was not going to die any time soon. Period. Getting that to stick was work enough, and in hindsight, I am not sure it really did.

The other thing that happened recently, post seizure, was that he visited his docs in Boston and they added two new medications.  These are meds that he needs for the manifestations of his TSC so while I was grateful they have these meds, I was a bit chagrined as well, at throwing two new meds into the lovely cocktail of pills he must take daily.  Moving forward with these new treatments, Jack seemed to tolerate the change in meds well initially, but thinking back, I bet they made his body feel weird and it once again reminded him of his own mortality.  When his sister and father casually made the comment that they hoped everyone was up to date on their Tetanus shots after some jokes about a rusty pitchfork, Jack stored that little nugget about Tetanus away in the back of his head for the culmination of this perfect storm of events that sent him spiraling downward into complete fear land.  He called it Tetanus.

I’m happy to report that at this writing, he seems to be climbing out of the rabbit hole of Tetanus fear to the point where he might be glimpsing some light at the top.  This morning, he was joking about his shoes not fitting right, and we laughed about his crampy sneaks, and went to get his older ones at his dad’s.  He walked into school with a lighter gait than I’d seen in recent days. His teacher and I checked in, and she said she’d felt the shift as well.  And of course, his therapist, who has been an incredible piece of Jack’s stabilization, reminded me that Jack also was quite anxious last spring when he had to take antibiotics for strep throat, and he’d come through that.  I’d forgotten, as often am rolling day by day with these challenges. This time, however, I’m writing it all down so the next time we are faced with a potential outbreak of Tetanus, I’ll remember to have faith, it’s just a pretty strong wave in the ocean of life.

I’ve been forced to reflect over the last few days on what a perfect example of fear this whole ordeal with the Tetanus represents.  It’s irrational fear.  He went down a deep rabbit hole and was having a hard time climbing out enough to see the light of day.  This seems to almost be our work as a country right now on so many different levels.  We’re all facing a bit more fear as a nation than we might have anticipated.  We’ve been warned, there’s history after all.  But still, we have to learn it on our own.  I won’t go down any sort of rabbit hole on that notion, but will end this little reflection with the message of hope. Hope that we can all learn from Jack and his riding the Tetanus wave of fear. It didn’t drag him completely under, and sometimes we all need a little shot of Tetanus to come to see the light.

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Trumped!!

trumpedI glimpsed her red trump hat as I turned the corner to go out onto the main road.  She was dressed in shades and patterns of red, swinging her arms and walking in rhythm to her music, a constant companion.  The landlord’s dog Harry, a sinewy standard poodle, curly haired ball of energetic love, was walking peacefully beside her.  I called her name but of course she couldn’t hear me as she listens to her music at what could be called deafening sound levels.  In my guess, an effort to tune out the world and set a boundary for her own safe place within.

Harry, said dog, turned at my voice and then she did as well.  I caught her eye mid wave, a pure place, I hesitated for a brief second, as did she, before we both went our own separate ways,within our own separate worlds….two souls on a journey.  In the act of loving her and all that is involved in her life situation, from my place deep in my own life situation, I sensed the wisdom of the ages.  The mother daughter push and pull into the void that I was in the middle of navigating with my own mother. Lord let me not lose myself applying this label and that label and remember who we both are in this precious lifetime. .

My daughter, is a trump loving republican and loves all things his campaign represents.  She’s gone through many obsessions over the years as her incarnation has had it’s challenges and with some setbacks from the get go,so  she’s had her work cut out for her.  There’s been many autism spectrum typical narrow focused interests over the years, but this one has seemed to be the most extreme and fly in as direct opposition to my own interests and beliefs as well as what I had hoped I might be teaching her.

Go figure.  It has been tough not to recoil in horror as she espouses the complete trump party line, has tuned in to certain conservative radio talk shows and has educated herself on the ins and outs of the campaign and politics in general.  We have a moratorium on discussion of politics within the house and there is more than one time where she has schooled me on the rules when I want to take on these beliefs.

It’s humorous.  I know.  Here I am with this liberal, Ram Dass listening, free spirited, old hippie-ish kinda mojo and she comes along raising her red rebel donald trump flag, right in my face. But it’s so funny because it’s not who she is.  Anyone who knows my daughter, knows this.  She’s an unselfish, caring and intensely strong person who just is defining her boundaries through the guise of a political ideology.

There is such a life force within her that despite her beliefs being aligned with what I see through my own matrix, as ghastly and terrifying, she sees freedom. “ People gonna judge”, no matter what and I like it that she’s taught us all a bit of a lesson about playing the game of life.  If there’s moves in this game of life, who knows, she may be one move ahead, lapping us without even knowing it.  Mark my words though, there’s no keeping this young lady down and while she may need some assistance with logistics, she’s going to fly and for that, I can thank the trump campaign for the transformational backdrop for some serious life lessons.

Maybe we all are a bit trumped by this whole political machine in motion this election and this whole thing is a big wake up call for every one of us in this country, asking us to define what really matters to us as a country, what in the heck we are doing caught in this paradigm, and how could things ever get to this point?  I’d like to think so, and I’m listening. Once again, thanks Mary Ellen!

Posted in #IAMTSC, autism spectrum disorder, Buddhism, Eckhart Tolle, medical conditions, parenting, Ram Dass, recovery, tuberous sclerosis complex | Tagged , , , , , , , | 1 Comment

The Power of Ice Cream

freezer lockWe have this little issue with ice cream in our family.  It goes way back.  Way back in my ancestral tribe.  Maybe it’s something that goes way back for a lot of us, those first memories of eating ice cream, pure, unadulterated joy….until, of course, we became adults (or so we think) and we learned about calories and fat and all the fun sucking adult knowledge we are all way too heavily burdened with, and then it became more of a secret indulgence.  Whatever, I still say eating ice cream is a sincere act of loving one’s self, you can quote me on that. I’ve watched pretty much all the adults in my life, from my earliest memories which include now, acknowledge and continue their love affair with ice cream.

My dad was a supreme ice cream eater.  Coffee, was his hands down favorite, but mix it with any sort of chocolate product, as in “mud pie” ice cream, and he was surely blasted to a certain place in heaven followed by a long tumble to the nether regions of his digestive system, countered also by maybe a long run to balance it all out.  Hah.  Yes, his love ran that deep for all things “Yum”, but ice cream was a profound attachment.  My mother too!  However she is more of a butter pecan and mint chocolate chip girl, and entirely more sensible.  Thank God.   And so it has been passed down through the genetic code, infused into me at a molecular level, and into every single one of my kids, with a similar passion.

So, we almost always have ice cream in our freezer.  Until recently.  We all have been, in our family, in one way or another, making the transition from being identified with our challenges in this lifetime, to seeing them as such and not letting them define or dictate our inner sense of being.  This has meant lots of growth, both internally and externally for all of us. Jack, the one with the most challenging life situation, he took the fall the deepest, into a full blown ice cream attachment. He simply wanted more. Also,he was in the midst of inner turmoil, the likes of which no child his age should have to endure, but through which he continues to persevere. Persevere enough for me to be confident he will learn the tools, and can access his internal resources to battle the demons of the particular type to which seemed to swarm his mind.  Which, before I go too deep, is why I had to find a lock for the freezer..

We had been seriously going through some ice cream, and I’d tried all the tricks.  We discussed getting into the ice cream and consequences…as in health wise, budget wise, extrapolated out to quality of life, and beyond,  on his terms…but nothing was cracking the surface except for our continual loop of expectations not met, hope slashed….and it was all falling on Jack.  No matter what, he couldn’t stop.  We went long periods without any, (maybe 3 days) as well purchasing some expensive alternatives, such as individual ice cream treats from the convenience store.  I tried kinds of ice cream that he couldn’t possibly ever enjoy…more “mature” flavors such as pistachio almond and various intensities of frozen yogurt, fat free, sugar free, flavor free. Nothing was working.  He’d douse whatever was there with whatever toppings moved him at the time….chocolate syrup, sugar, cinnamon sugar, regular syrup,etc….. the pressure on both sides was too much.   We needed a middle path, a way thru.

We had to buy the freezer lock.  Amazon to the rescue.

It goes without saying, but I’m gonna say it… being able to buy ice cream again has been truly wonderful.  The first day we had the lock on the freezer, I felt a little sad for Jack.  He looked glum.  It wasn’t really his fault.  It wasn’t anyone’s fault. There were many contributing situations all pointing to the freezer lock being the best solution for the time being.

I hope, in time, we won’t need the freezer lock.  Already, Jack seems content with the one serving of ice cream (which equates to about 4) he gets a night.  This is progress, and  I am down with just that.  We won’t always have to lock up ice cream but we kind of have had to learn to use external source to control for what eventually will be an internal job.  The trick is in allowing  the process to flow toward being done on an internal level, as it’s only then that we can  unite fully, with fellow ice cream lovers in mutual enjoyment of ice cream for everyone every day, or most days, for the rest of our moments here on this planet!!

Moving outward, maybe there should be a political party in our country that rallies behind those who love ice cream?  Ice Cream Lovers United…or something like that. Our platform would be simply our love of ice cream I think we all could get behind it and enjoy the support of each other, though maybe it would get divisive between the butter pecan lovers and the cherry vanilla lovers?   Sigh.  Who’s to say? :)

Well then, time to go.  It’s 12:31pm and it’s ice cream time somewhere, even though it’s not Friday either.

Posted in #IAMTSC, addiction, Buddhism, Eckhart Tolle, medical conditions, parenting, Ram Dass, recovery, Tara Brach, tuberous sclerosis complex | Leave a comment