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 | 2 Comments

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.

 

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Posted in addiction | 3 Comments

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.

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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 | 2 Comments

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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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

The Path…infused with Artisanal by Dad

My father died of fronto-temporal dementia in September of 2004.  He was an exceptional human being in the way we all are exceptional human beings, however, he knew it.  He was a paratrooper in his early twenties and jumped out of a plane to find that his parachute wouldn’t open.  Being a master at improvisation, a skill handed down from a legacy of improvisers, he was able to ride down on the top of another’s open parachute, and then another, until he finally landed in free fall, 60 feet onto his head.  He was hospitalized and there was talk that he might not live.  He did survive the fall and despite his humanity was and is one of the most alive beings I’ve known.

Recently, I was given a box of old letters that was salvaged from the attic of my mother’s house. They were letters I received from friends and family as I attended college in the midwest.  Wheaton College, Wheaton Illinois.  The very place both my parents met and later went on to marry and start on their lives together.  So yesterday, I decided to start reading some of the letters from my dad and really get a better glimpse into who he was, who he is and who he will always be to me.

As I’ve shared some of my most personal reflections here in such a public arena, I’ve often wondered what compels me to do this and before I over ponder, I will share one of these letters my father wrote to me, this particular one from back in October of 1984, my freshman year of college, 1000+ miles from home, my first collegiate season of cross country, in a very fundamentally Christian conservative, yet intellectual environment.  We had to adhere to a strict set of moral biblical imperatives (aka “the pledge), however as college kids, we found ways to have fun. Thus the letter refers to “pranks”, acts which were silly, harmless (relatively) and infused what often seemed grim conservative intellectual (oxymoron?), with a certain lightness…as did my dad, in my life, and his letter, the words of which, ring like sunshine on the awareness of my being.

I am becoming free to live and engage in more conscious parenting of these children, those with TSC and those without, in the role of their mother, fellow human being and fellow path walkers in this human predicament in which we’ve all found ourselves, together. Through untangling the roots of the pain bodies (see Eckhart Tolle), that have been wreaking havoc in our lives, in such a way as to clear our inner landscape, we can all be more effective as a family, as humans being, right here, right now, in loving awareness.  It is my parents who set me on this path and never have I been more aware of this than I was yesterday, sitting in my car, in the Big Y parking lot, reading my dad’s letter, with tears of pure joy and awareness streaming down my face.  I only hope another out there on a similar path, as they all are ultimately the same path, might hear the message….and it goes as follows:

Dear Jill,

Did anyone ever tell you you were strange?  I am telling you the fact.  I just went through a box of pictures of which I have enclosed at least one (Do Not Destroy-PLEASE RETURN) of the aforementioned.  Of course, all the previously strange things you have done that didn’t get into the pictures are also remembered in this assessment.

Does the present prank-mobile suggest some of your strangeness surfacing?  Well, hang in there, it is all right I still love you, probably even more because being with, talking to, writing to, or written to makes you a very interesting person and contagious fun.  Thank you for not being in college with me.  Young Life leaders were under the pressure of Wheaton and sports and to vent the tension often did the strange type of things.

One of the most exciting things I realized in those years with all the learning and doing I never really understood what I just was comprehending.  That Christ came totally opposite of John (the Baptist) who was the austere, strict, according to the prophets and law and would probably fit in at Wheaton, but Christ came enjoying himself and others, eating and drinking and expressing life to its fullest.  The man who cared when no one else did, the man who cried when no one else would, the man who always did the unexpected, because of man’s inability to understand or appreciate life.

GOD BLESS you Jill.  Being is where it’s at so in all your doing, be sure to BE the person who cares amidst the fun.

Could you send your dates of remaining meets? Next letter!  Thanks.

Love and Kisses,

DAD

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Happy Mother’s Day, a bit early for once.

Dear Mom,

I love you.  I feel a deep wave of love come over me when I say that and it brings tears to my eyes.  I love you with every single cell of my body, mind and spirit. Even my ego has a stake in it.  It has been a meandering path for you but I look back at our lives and see every turn we took as a family was only meant to bring us closer to each other and closer to our pure inner essence of God.

I got really really lucky when the veil dropped upon my birth back then in November of 19xx.  I can talk about you and Dad and wax eloquent on all the richness and depth you both had as individuals, about the incredible experience of getting to know you both as your daughter, as the grandparents of my children, and as fellow human beings, but I’d rather tell you how grateful I am that it happened the way it did.  Little did we all know, we’ve been working on this incredible curriculum we called down to get us free and back home, back to the garden.

I’ve been sleep walking thru a lot of parts of my life, Mom.  I needed to live it this way, to go down those dark alleys that you feared, shake hands with my demons.  I needed to so I could be here now to understand that it was all ok, even though there was so much darkness.  You stood by me despite what I know were your own doubts that I would ever pull through the dark night of my soul. The failed marriages, the alcoholism and other addictions, giving up custody of my son, stumbling through years of parenting special needs children, half awake, barely conscious, calling down grace.   I hope you can come to some measure of peace in your soul and let go of anything that you think you might have done wrong or less than perfect which might have created more suffering for me.  It was all grace, it is all grace.

This is what you are:

a long walk in the woods on a day, any day, naturalist

whoever goes along, learns and grows

cloth napkins at dinner and all the food groups at every meal

up early to exercise and up late to do mending.  

alto in the church choir, bell ringer, just for fun

cross country skiing for hours at the first sticking snow  

head thrown back in full bodied laughter, every summer

on a porch or in a kitchen,

with your family my family, our family  

long car rides with word games and license plate spotting

museums where my brother and I would be waiting for hours for you to finish reading all the informative placards then making sure we didn’t miss anything on the car ride home

the one to talk about the “meaning” of the movie

the story in the song

coke classic stashed in the back of my refrigerator like it’s crack cocaine

piece of a pumpkin muffin hidden behind my toaster

care and concern and self sacrifice and light.  

the almost imperceivable wince at the tattoo

the tense mouth during the Simpsons shows you sat by and tolerated

the puritan work ethic that never let you rest.

Pied beauty.

Like daughter

Like mother

Now, all the lessons you taught me that I didn’t think stuck, all the many times I have been in the woods and remembered that I was supposed to be there for some reason but couldn’t quite remember why, all the places we went and things we saw and laughs we shared and books I read that you strongly encouraged…. you are all that too.

You and Dad were the most incredible bookends for a lost soul of a daughter who finally is waking up to knowing that everything I sought after was there the whole time, the groundwork laid with loving awareness, for minute upon minute, day upon day, year upon year.   I believe you would say that is how our heavenly father cares for us.  You are perfection in every moment and you have no clue.  You carved the keyhole and waited.  I found the keys and now we can be together here, and now with a glass of wine for you and seltzer for me, and laugh and love and know we are only just walking each other home, for the rest of our lives in these bodies, on this planet.

I love you Mom. Thanks for choosing me.  Happy Mother’s Day.
Jill

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Marathon Aftermath

marathon 1It’s been almost a week since I crossed the finish line of the Boston Marathon and besides suffering a bit from muscle soreness and pmld syndrome (post marathon let down), I’m doing well.  I received more praise than necessary and was told I provided inspiration for many.  I’ve reflected on this idea of inspiration quite a bit since then.

It’s funny how everyone looks at a marathoner as a hero, as representing something maybe they’d like to do or know they could never do, and it seems as if the marathoner is almost elevated to a lower form of a deity.  This feels weird and uncomfortable for me.  When my boyfriend picked me up in Hopkinton after the race, I got in the car and said to him, “now it doesn’t have to be all about me anymore, I’m glad it’s over, it was a once in a lifetime experience and I feel lucky to have had this experience but I’m tired of all the attention” to which he replied something along the lines of, “let it be about you for just a little longer…you worked hard and you went out and did it so accept the praise and then move on”.  I took this to heart.

I did run many many miles on the back roads and the rail trails of Rutland, Holden, and Paxton over the past year, through all kinds of weather, some formidable and some delicious.  It wasn’t a bad winter so I got a break there, though I know I would have gone to the gym if necessary to get the job done.  So yes, I put the miles in and was able to pull it all together on race day and have a great race.

Let me tell you a dirty little secret about probably a good percentage of marathoners …it is that we LOVE the long runs and just about all the training that goes into preparation.  It is glorious.  There were very few times when I had to motivate myself to get out the door. This may not be true across the board, but I’m betting it is more true than not.  I loved the feeling of running away from my kids, my responsibilities in life, my worries and problems.  It is a pause, the run, a time to reflect, to go deeper into my consciousness and heal.  So it has become a win-win for me as it represents a sort of therapy, all this running, but it is the ones on the sidelines that are waiting and watching and hoping to see their runner in the race, that make the real sacrifices when they love a marathon runner.

It is my kids waiting for me to come home every morning on the weekends, worrying about me on the runs I did in inclement weather, it is my mother worrying and praying for me that I will use good judgement in deciding how much to run and she who knows the energy I’m using to train could possibly be used better elsewhere in the future, but she smiles and supports me as she knows and accepts that being a runner, for better or worse, is just part of who I am.  It is all the doctors who patiently treated my stress fracture and a friend who gave me free massages.  It is the many who donated to my cause in this past marathon effort, that of raising money for TSC.  It is the toll this has taken on my body at age 49.  There is a bit of a self destructive quality I have that also can be seen as willpower in light of evidence that running 15 miles a day might not be the best idea for much longer.

So yoohoo all you out there cheering, it is you that are the true heroes.  Each marathoner in the race represents a full army of support and we runners are just showing up to represent and honor those who love us with our heroic act of seeming self sacrifice, yet secretly knowing that it is really a joy to run.  I have truly had the chance to meet God on my runs, in the trees, and brooks, the fields and farms I run past, there is a still presence that envelopes and fills me and always keeps me coming back, like a good addict.

The paradox of it all is that running a marathon is an act of much willpower yet it is on the run, that there is a chance to really surrender to what is in this world and in ourselves and find true inner freedom.  Yet even we runners, have to come down and do the laundry, the dishes, walk through the conflict and drama of our lives and try to remember that we are one among many and we can choose to feel special and exceptional for being able to perform such a feat of willpower, or we can seize the opportunity to let our runs be a wake up call, and walk (or run) the line between willpower and true freedom of the soul.  It is a daily thing, a daily battle for me, but taking a step back and bowing to the heroes in all of you, is my lesson from this marathon thing, I did.

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Homeward Bound via the Boston Marathon

life1I had to think outside the box to connect the dots but holy mackerel, it took a fellow game player, with a bat, to show me how to hit it out of the park and help me see the metaphor, my own metaphor and all of ours in life. You see, it’s not about me anymore because I’ve set myself free.  It’s about all of us together and all of you who reached out their hands to give donations in multitudes of ways along the path of life to help me be in the position where I am right now….that of asking for help.  Help for my children.

I’m every mother out there and have been all of you good and bad, and all the places in between at one point or another in my life.  The good mother in me appeals to the good mother in you as running this race on the 50th anniversary of women running the Boston Marathon, is symbolic of all I want to do for my kids, all we women ever want to do for our kids, we lay down our lives for them but in doing so, we save ourselves, by running, what running gives back in internal freedom and joy.

I got distracted with “me”, and I thought it was all I’d ever see, but it’s about them, my kids, all of our kids, and the future and coming home.  Coming home to hope and faith that there is a better future for them with better treatments, more doctors and more public awareness of this disease of Tuberous Sclerosis Complex.

In some small way, I feel that this fundraiser has symbolized my attempt to give back to everyone in my life that has believed in me and seen the good in me and in all of us who want free from these chains of life, represented by dis-ease. Living life with a  disease, as dis-ease in all forms, physical disease, mental disease, soul sickness that we all at some level, at some point in our lives have run from.

Running for TSC, for me, is like finally waking up and realizing that I’m running home, homeward bound, as all of us are in life following our own curriculums and hoping for relief, salvation, in all sorts of forms.  As Ram Dass says, “We’re all just walking each other home”.  So tomorrow, the symbolism is not lost on me, especially as a mother.  Mother of 5, three with TSC.

I am asking one more time for donations  Don’t see me, see my kids, the TSC community and outward to the special education community, the mental health community, the general overall community of human beings at large. All of us helping each other in our various methods of recovery, and waking up from the game of life to realize we’re all in this together, walking and/or running each other home.  #IAMTSC

To donate online, click on the link below:

https://www.crowdrise.com/jillsraisingmoneyfor/fundraiser/jillwoodworth
Thank you each and every one of you as “donations” come in all forms and there have been too many to name so God Bless you all!

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