Dad.

10530907_10203829955885953_7702963195800234389_n8My kids have one living grandparent who happens to be my mother. While she truly has the energy of four people, I often wonder what it’s like for my children to grow up with only memories of their other grandparents, all whose lives ended far too soon due to both disease and tragedy. I was lucky to have known every single one of my grandparents and remember them well. In my experience, grandparents are the ones who smooth over the wrinkles of a parent’s intensity and make everything seem right with the world. Sometimes I forget that my kids want to know more about their grandparents, and that they too feel the loss.

So I started singing. Sounds odd but my dad used to play the guitar fiendishly, and had this leather bound “Young Life” songbook filled with folk songs, religious songs, even some old Beatles tunes. The lyrics are written out and chords are there along with the words. It’s almost a magical book. Pages are ripped out of the spiral bounding and placed haphazardly back in the front. Certain well-worn pages with the most familiar of songs, light up with memories of listening to Dad play while dancing around the kitchen with pure childlike glee.

I’ve been singing from memory the John Denver song, “Grandma’s Feather Bed” to my daughter before she goes to bed. For some reason, this was the song that popped into my head when she asked me to sing to her. I am so not a singer. I will make that clear. But I do enjoy singing and was glad to belt out an off key version, much to my daughter’s delight. It’s become such a routine that I dug out the old songbook and looked at all the lyrics and was thrilled that she actually tolerated my off key singing and the almost corny words. It made me remember my dad, her grandfather, Kent. My father died when my Caroline was 6 months old. I have a picture of dad holding Caroline during the last stages of his dementia. His vital spirit was long gone, but something about being able to hold his new grandchild, brought back a certain glimpse of dad that I felt resonated with connection for Caroline, for me and for all of us.

Dad was charisma embodied. From the moment he stepped into a room, he effused energy. He was always full of jokes and stories and usually had his guitar within walking distance. My friends used to beg me to come eat dinner at our house because my dad would cast them into fits of laughter during the meal. However, there was a serious, very spiritual side to him that those close to him respected and sought out. I remember car rides back from my college in the Midwest where I’d be in complete hysterics one minute and then be led into a very serious discussion on the meaning of life, in the next. Some of it was confusing for me, but my journey in life has led me back to the place where I can truly appreciate and understand so much of what he was trying to tell me. I am so very incredibly grateful for him and his wonderful spiritual enthusiasm which while lying dormant for so very long, has been rekindled and I hope to continue to find ways to pass on the knowing of who he was and what he was here to teach me, to my children in any way that I can.

When I was about three, Dad made a bag swing from an old burlap bag, stuffed with God knows what and strung from a tree. One home movie that I remember clearly, and hold dear, is of me at about age three, running and trying to jump on to the bag swing in our backyard. I had his bright red hair at that age, and there I was running and jumping over and over again trying to get on that bag. He narrated this movie and what he said during this particular scene, which ended the movie, was , “Jill, I hope someday you find your bag”….This memory has almost held me hostage over the years and it’s just recently in the last 3 or so years that I understood the weighty significance and precognition this whole scene has represented for me. I share it because finally, at teetering on the brink of 48 years old, have found “my bag”. There was a lot of time spent running and trying to jump up on different shoddy sorts of bags, metaphorically speaking, and the lessons learned during that process have enabled me to open to the love that flowed through him onto me and most days….onto my children.

While grandparents might not be present, I believe memories of them can be kept alive and in the lyrics of the songs in the old leather bound song book, or memories of getting on that bag swing, carry on a richness and purpose that bring to life the aliveness and essence of a person in an incredibly real way. Thanks Dad.

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Happy Halloween…..

Ok, so now I am going to write that blog about Halloween which I started writing a few weekends ago and then got sidetracked on that other, more important subject, which you might remember.  I’m not saying in any way, however, that Halloween is not important, because it is.  Very important.  I love Halloween.

The only real tradition on Halloween is trick or treating and parties.  Who doesn’t like begging for candy or hiding behind an awesome costume in a social setting?  I suppose there are some on the far left and right of life that just can’t handle Halloween for their severe interpretations of the history of the day, but not our family.  We embrace it whole heartedly.  Most years, we go to the same neighborhood.  It is a large neighborhood, safe, with houses not too far apart.  The kids can run with wild abandon, from house to house, while their much pined for costumes, fall half off and the masks that are necessary for the look of the costume are removed, so basically, in my son’s case, who was Batman for a few years, he was running around in a big black body suit.   But that’s all part of the fun.  Sure there are some grumpy people in the neighborhood who aren’t psyched about the influx of the equivalent of the city of Worcester lined up at their front door, and that’s ok, they have the option to abide by the universal signal of a “no candy” house, by turning out their lights and most likely, hunkering down in the dark, grumbling about the state of the country.  Oh well.  There are enough generous people out there, some so big hearted that they even leave a big “help yourself” bucket of candy.  Hmmmm…

Not much has changed about Halloween since I was a kid.  I even trick or treated in college.  I dressed as a runner with the rest of my cross country team, and ran from house to house, bags open.  I often planned and/or designed my own costume, once even dressing as a pickle. I’ll explain.  Never.  My kids this year are going to be, from youngest to oldest, a thing 1 or 2 from Dr. Seuss, with a friend that will be the other of the things, my son is planning to be the grim reaper, and reap some grim until his curls get too sweaty and he’s running around in a black robe, my 16 year old daughter is getting the heee-eck out of dodge and heading to six flags for some sort of spooky town thing with her friends, and my oldest daughter, (18), will probably be seeing how much candy she can scam in her street clothes, walking along with the gang.  I’m looking forward to it.  Getting jacked up on sugar while out getting some exercise, is really awesome.

We come home and the candy is soon confiscated and hidden.  In my room.  For me to sample and check for razor blades.  So far, I’ve been pretty darn lucky and haven’t found any.  The wind down is rough and kids are up late.  This year, teachers everywhere in the country are down on their knees thanking their lucky stars that Halloween falls on a Friday and there is a two day buffer before the cracked out on candy kids, reenter the classrooms.  I know about this because my dear mother is a teacher.  Dentists, while openly encouraging kids to brush their teeth after eating all the candy and try to stay away from the sticky stuff, are goul-like, secretly wandering the streets, magically making sure as much candy is distributed as possible.  True story.

I encourage all you readers to get out there and enjoy this freebee holiday before we get nailed with more serious holidays, heavy with obligations involving family and friends.  If you ration out the kids candy, saving some for yourself, you may have just enough to get yourself and your children right through the holidays in pure sugar high bliss.   Right on!halloween

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The Fifth Child.

I dropped my youngest off at school this morning in utter silence.  I knew that if I opened my mouth, nice things were not going to come out.  It was one of those mornings….the departure of herbrother and sisters had gone quite smoothly and I was tuning out on facebook, trying to ignore the exclamations from the other room.  I could not, quite.  First her hair was too “poofy”,and I could hear her a few rooms away screaming. I mean…SCREAMING!  Her brother remarked, calmly, “is that someone yelling?”…Me:  “yes, (sigh), that’s your sister”, then him, “oh”.

Then she liked it poofy.  Then how long would it stay poofy?  Me:  longer if you use some of your sister’s hairspray.  I kept “working” on the computer, head down, nose to the grindstone.  If I don’t react or even interact, the mood shall pass.  Pass it did.  “Mom, will my hair still grow even though I got it cut yesterday?”, Me:  “Yes dear, it will grow.  It will grow faster because you had the ends cut off.”  Her:  “How fast will it grow, how long will it take to get down to here?(indicates with hand down to about her belly button)…Me:  “a long time.” Bad answer.  You get the idea, this continued for a while with her escalating and me reassuring her as best I could.  To this, I could relate.  I probably had the same conversation with my mother about my hair, ad nauseum.  Girls across the country and the world, in kitchens and bedrooms, in cars and in mud huts… all having basically the same conversation.

What happened next was, it was time to go and snacks were needed.  Nothing was any good even though I’d been to the store yesterday, and the day before and the day before that.  No suggestion I made was adequate.  Even the idea of keeping certain special snacks in her room as her 13 year old  brother is the voracious eater with a nose like a bloodhound for finding and finishing entire bags, boxes, plates of snacks and food.  He is a big kid.  So, I was informed that if she kept snacks in her room there would be ants and flies and her room is already a mess.  Point taken.  At that point I said I’d be down in the car and if she wasn’t down there in five minutes, I was (calling her father, taking away her phone, donating her clothes)…pick one.

I sat in the car fuming. She came out and got in.  What I said and what she said next I will not repeat, but none of it was nice. So there I was dropping her off with tears behind my sunglasses, in utter silence, not able to get past my anger and even tell her I love her unconditionally and even though I was mad and she hated me and wants to go live with her father, I still will pick her up after school and no matter what she says or does, I will always always love  her.

Who is this child?  My fifth child.  What force of cosmic energy and what sort of wild incarnation is she? I have been through hell and back with the other kids medical issues, hospitals, ERs, treatments at home, medications, IEP meetings and plans, and now this.  I never thought parenting would be easy, but maybe I’d catch a bit of a break with my typical kid, and here I am, brought to my knees.  And I don’t want advice.  I think that’s part of it, so many and myself included, want to jump in with advice.  It gives the situation distance.  I want to share it, unadulterated, the purity of it in all its rage and fear.  Like fresh road kill,  glistening and pulsating with intensity.    I just want to be heard,  mirrored and have a fellow human being share my grief and rage without trying to fix it. Someone to sit with me and listen,  and maybe give me a hug.  Even a hug over the social media works.  Believe it or not.

Then, I was driving home from her school, still with the tears, and all of it, big and black and looming.  I threw my words of prayer up to the universe as in that very moment, I did not know if I could go on.  I happened then to glance over out the window of  the car and see a man out running on the sidewalk.  Fall leaves were swirling around him and at his feet.  I suddenly felt space.  I could and would go on and this too, as does all of it, pass.

And hey….at least I got a blog out of it.

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From addiction to grace. A life hack. (rated PG)

I experienced a life hack when I was cast into the realm of the spiritual world during a marijuana induced psychosis.  I had a true out of body experience that was at once as horrifying as it was incredible.  It was at the end of a marijuana bender that included non stop marijuana use from about 4 months into my newly found “sobriety” until I crashed, or was a victim of grace,  about 2 months later.  I was foolish.  I should have known better.  I had had previous episodes with disassociative trips on weed, but nothing like the one I had this time.  I was initially in a dark place where I watched myself as I spewed horrid statements during outlandish hallucinations combining some truths with some incredulous non-truths.  From there I flew up up up and away in the ambulance to Umass EMH.  I was in and out during the ride, at one point coming on to the medic, and then shortly after, apologizing profusely.  Once in the hospital I was on a better part of my trip, which ultimately ended in me giving birth to what must have been myself, a red headed baby.  I was hoping I’d wake up in a new life, but to my dismay, I came down to notice some of my personal effects on a chair nearby and eventually the hospital room. It’s ok, you can laugh.

Truly horrifying.  Truly enlightening.  I cried out to the universe, or God, or my higher power, for help as I waited for my soon to be ex husband to do me the favor of letting me stay in the house for the night until I found another place to stay indefinitely.  He was done with me, and he had every reason to be.  God answered in a big way as I felt presence as I’d never felt before and haven’t since to that intensity and I knew I was at rock bottom of my addiction problem.  I was completely terrified, as I was on the brink of losing everything,  but also that I saw a shimmer of hope, brighter than I’d ever even imagine I’d glimpse.  Since that very night I have remained clean and sober for going on 2 and almost a half years.

Subsequently, I have grown in my faith in a higher power who I choose to call God, have immersed myself in recovery from alcohol and addiction via the 12 step program of AA, and had the God given inner resources to face myself and do what I needed to do to remain sober at all costs.  However, the psychedelic experience has stuck with me.  When I’d describe it to people, they’d tell me it sounded like I’d been slipped some acid in with the weed.  I don’t think so, as my minimal research has indicated, some people are prone to psychosis while using marijuana.  What had happened?  How had I been outside of my body and what did all the hallucinations and experiences I had mean?

I’ve been too busy to think too seriously about these concepts while dealing with a divorce and a move and single parent of four kids, until recently.  Now that life is back in the school routine, we are settled in our apartment and I have a bit of time to explore my ever expanding knowledge of my lack of knowledge, regarding spirituality.  Being raised in a fundamental Christian, family value type home, and despite my intellectual knowledge that it ain’t necessarily so, I have had this grim God father figure image of God.  All guilt inducing, guy in the sky,as my takeaway from Christianity. This set of religious beliefs which I tried my damnedest to believe,  turned me off to Christianity so much that I have been driven to explore other religious traditions.  Ultimately, I believe, and this is only my personal belief, that all paths lead to the top of the mountain and religion is just means to a way, or as the saying goes, “religion is for people who don’t want to go to hell and spirituality is for those who have already been there”. Anyway,  I have always wanted a way out of the religion box.

About a year ago, a woman at an AA meeting, mentioned a woman named Tara Brach,to  whom she had recently been listening. Tara Brach is a psychologist, author and teacher in the Buddhist tradition.  I filed the info.  She’d been on a retreat with Tara Brach and said it was amazing.  I filed it.  At the time, I was too bombarded with life stuff to tune in.  One day this past summer, I was about to go for a run and realized I couldn’t run one more step listening to the same raggedy old songs I had on my playlist, one more time.  And I remembered this woman had said Tara had a podcast.  I googled it and started off on my run, listening to a Tara Brach podcast on “virtual reality”.  It was unlike anything I’d ever imagined Buddhism or even spirituality could be!  I was hooked.  Another life hack added to my increasing hack job.

Since then, I have listened to a podcast by either Tara Brach, Sharon Salzberg, Jonathan Foust or Ram Dass on every single run.  Every single run. For months.  I run a lot.  It is refreshing, uplifting, eye-opening and truly inspiring.   I once again had the feeling that I did when I was deposited onto the third floor detox center of Adcare hospital, that I’d found a home.  Other alcoholics and addicts that told my story, Tara calmly and clearly, described a path which I didn’t even know I’d been on.  She inserts these hilarious anecdotes and stories into her talks which often leaves me doubled over in laughter, mid-run.  She also reads poems, mentions poets, authors, people I’d never ever heard of, who I’d immediately come home and google.  I found Ram Dass.  Never heard of him except for some powerful quotes I’d found to use on my Facebook coverpage in an attempt to make myself look deep, smart and healthy.  Hah.  Who is all three?  Ram is another incredible speaker.  I was told he even spoke at the Blue Plate, a past familiar watering hole of mine. A townie bar that wasn’t always a townie bar I gather. Ram Dass has been around forever, literally.  He gave some talks that I listened to, from the late 60’s and early 70’s describing his experiences using LSD, with Timothy Leary.  His psychedelic experiences reminded me of my own wacky weed trip.  I’m sure some of you reading will now stop reading.  It’s ok, I understand.

Ram Dass, as did Tara, did not exclude any religious tradition in their talks, they quoted the Bible, the Torah, the Koran and Buddha all within the same podcast. With this,  the 12 step program I practice,even my religious background, including a Christian college education all merged together in some weird vortex of awareness. It was exhilarating. Truly.  Maybe I was just ready for it.

Factoring in to my awakening, is the experience I have had raising my children.  Three of my children have a genetic disorder called TSC or Tuberous Sclerosis Complex. Tuberous sclerosis complex (TSC) is a genetic disorder that causes non-malignant tumors to form in many different organs, primarily in the brain, eyes, heart, kidney, skin and lungs. There is much variability as to how an individual is affected, mainly based on the size and location of these tumors in the brain. Seizures are a hallmark of the disease.  All three of the kids had life threatening seizures, which, until they were stabilized, involved years of very frightening experiences.  911 and ambulance rides were frequent, visits to specialists at MGH, were and are still frequent. Surgeries, hospital stays, all the things as a parent, one fears, are part of our lives.  My oldest daughter, who is now 18, had emergency brain surgery when one of the tumors in her brain triggered hydrocephalus.  Beyond the medical issues were the early intervention therapies, physical therapy, occupational and behavioral therapies. People.  At our house.  Almost every day.  There to work with  each one of  the kids sequentially, as their issues emerged.  As I look back, I see how we were completely living day to day with raging PTSD, waiting for the next emergency, that seemed to roll in just as things were resembling normal.

As I mentioned preceding, I turned to alcohol, and then pharmaceuticals to self medicate until it became far more than self medicating and I was a full blown addict taking care of three atypical kids and one more typical child, which really has thrown a wrench in the mix.  It’s been quite a journey, for myself, my ex husband and more importantly, my kids, who without realizing it, embody a human incarnation which is and will be unbelievable challenging.  Finally, thanks to my higher power knocking willful, hard headed me, flat on my face to get my attention, have discovered my path as a guide, teacher, loving caregiver a.k.a., mother of these rare souls.  And I don’t do it alone.  They have a father, who cares. And supports them.  Regardless, it has taken me many years of suffering as victim. Poor me, sitting at the bottom of a well of pity, drowning my sorrows daily, to get this.  Thank God I did!  It’s all grace now.  No matter what.  The more I am able to open to awareness, the more I can be here, now, for them and for myself.

I am linked on Facebook to many support groups for parents of kids with TSC, which is one of the most wonderful aspects of social media, that I’ve found.  In a short post, I can share my experience, strength and hope with another parent struggling with exactly something which I’ve experienced on my journey, and vice versa.  What a gift!  This disorder of TSC affects 1 in 6000! One in six thousand is a lot.  A  hell of a lot, when one looks at the prevalence of rare diseases. These parents and kids are in pain.  It’s a cold hard rain when one receives the diagnosis of TSC in emergency rooms across the country and around the world.  We, their father and myself, are lucky.   It could have been far far worse as far as severity of the manifestations of TSC in our kids.  They are all doing really really well! Now it’s mainly guiding them through these early years to the point where they can be independent and find their own way.  I’ve learned that you don’t own a child.  They are souls that we are here to guide, as did our parents for us.  This mindfulness I’ve recently discovered has brought everything together and is the all encompassing life hack.

There is so so much more! I want to write a book.  Maybe.  I have to life in the now and today I am not writing that book.   Today I am going for a run. I’ll begin to conclude (lol) with a line from one of my favorite poems by Mary Oliver:

“Tell me, what is it you plan to do
with your one wild and precious life?”

Peace, blessings and prayers as you reading this seek whatever might be your path while having this human experience. Thanks for listening.

Jill

 

Posted in addiction, Buddhism, medical conditions, parenting, Ram Dass, Tara Brach, tuberous sclerosis complex | Tagged , , , , , , , | 2 Comments

From addiction to grace. A life hack. (rated PG)

140728-215552I experienced a life hack when I was cast into the realm of the spiritual world during a marijuana induced psychosis.  I had a true out of body experience that was at once as horrifying as it was incredible.  It was at the end of a marijuana bender that included non stop marijuana use from about 4 months into my newly found “sobriety” until I crashed, or was a victim of grace,  about 2 months later.  I was foolish.  I should have known better.  I had had previous episodes with disassociative trips on weed, but nothing like the one I had this time.  I was initially in a dark place where I watched myself as I spewed horrid statements during outlandish hallucinations combining some truths with some incredulous non-truths.  From there I flew up up up and away in the ambulance to Umass EMH.  I was in and out during the ride, at one point coming on to the medic, and then shortly after, apologizing profusely.  Once in the hospital I was on a better part of my trip, which ultimately ended in me giving birth to what must have been myself, a red headed baby.  I was hoping I’d wake up in a new life, but to my dismay, I came down to notice some of my personal effects on a chair nearby and eventually the hospital room. It’s ok, you can laugh.

Truly horrifying.  Truly enlightening.  I cried out to the universe, or God, or my higher power, for help as I waited for my soon to be ex husband to do me the favor of letting me stay in the house for the night until I found another place to stay indefinitely.  He was done with me, and he had every reason to be.  God answered in a big way as I felt presence as I’d never felt before and haven’t since to that intensity and I knew I was at rock bottom of my addiction problem.  I was completely terrified, as I was on the brink of losing everything,  but also that I saw a shimmer of hope, brighter than I’d ever even imagine I’d glimpse.  Since that very night I have remained clean and sober for going on 2 and almost a half years.

Subsequently, I have grown in my faith in a higher power who I choose to call God, have immersed myself in recovery from alcohol and addiction via the 12 step program of AA, and had the God given inner resources to face myself and do what I needed to do to remain sober at all costs.  However, the psychedelic experience has stuck with me.  When I’d describe it to people, they’d tell me it sounded like I’d been slipped some acid in with the weed.  I don’t think so, as my minimal research has indicated, some people are prone to psychosis while using marijuana.  What had happened?  How had I been outside of my body and what did all the hallucinations and experiences I had mean?

I’ve been too busy to think too seriously about these concepts while dealing with a divorce and a move and single parent of four kids, until recently.  Now that life is back in the school routine, we are settled in our apartment and I have a bit of time to explore my ever expanding knowledge of my lack of knowledge, regarding spirituality.  Being raised in a fundamental Christian, family value type home, and despite my intellectual knowledge that it ain’t necessarily so, I have had this grim God father figure image of God.  All guilt inducing, guy in the sky,as my takeaway from Christianity. This set of religious beliefs which I tried my damnedest to believe,  turned me off to Christianity so much that I have been driven to explore other religious traditions.  Ultimately, I believe, and this is only my personal belief, that all paths lead to the top of the mountain and religion is just means to a way, or as the saying goes, “religion is for people who don’t want to go to hell and spirituality is for those who have already been there”. Anyway,  I have always wanted a way out of the religion box.

About a year ago, a woman at an AA meeting, mentioned a woman named Tara Brach,to  whom she had recently been listening. Tara Brach is a psychologist, author and teacher in the Buddhist tradition.  I filed the info.  She’d been on a retreat with Tara Brach and said it was amazing.  I filed it.  At the time, I was too bombarded with life stuff to tune in.  One day this past summer, I was about to go for a run and realized I couldn’t run one more step listening to the same raggedy old songs I had on my playlist, one more time.  And I remembered this woman had said Tara had a podcast.  I googled it and started off on my run, listening to a Tara Brach podcast on “virtual reality”.  It was unlike anything I’d ever imagined Buddhism or even spirituality could be!  I was hooked.  Another life hack added to my increasing hack job.

Since then, I have listened to a podcast by either Tara Brach, Sharon Salzberg, Jonathan Foust or Ram Dass on every single run.  Every single run. For months.  I run a lot.  It is refreshing, uplifting, eye-opening and truly inspiring.   I once again had the feeling that I did when I was deposited onto the third floor detox center of Adcare hospital, that I’d found a home.  Other alcoholics and addicts that told my story, Tara calmly and clearly, described a path which I didn’t even know I’d been on.  She inserts these hilarious anecdotes and stories into her talks which often leaves me doubled over in laughter, mid-run.  She also reads poems, mentions poets, authors, people I’d never ever heard of, who I’d immediately come home and google.  I found Ram Dass.  Never heard of him except for some powerful quotes I’d found to use on my Facebook coverpage in an attempt to make myself look deep, smart and healthy.  Hah.  Who is all three?  Ram is another incredible speaker.  I was told he even spoke at the Blue Plate, a past familiar watering hole of mine. A townie bar that wasn’t always a townie bar I gather. Ram Dass has been around forever, literally.  He gave some talks that I listened to, from the late 60’s and early 70’s describing his experiences using LSD, with Timothy Leary.  His psychedelic experiences reminded me of my own wacky weed trip.  I’m sure some of you reading will now stop reading.  It’s ok, I understand.

Ram Dass, as did Tara, did not exclude any religious tradition in their talks, they quoted the Bible, the Torah, the Koran and Buddha all within the same podcast. With this,  the 12 step program I practice,even my religious background, including a Christian college education all merged together in some weird vortex of awareness. It was exhilarating. Truly.  Maybe I was just ready for it.

Factoring in to my awakening, is the experience I have had raising my children.  Three of my children have a genetic disorder called TSC or Tuberous Sclerosis Complex. Tuberous sclerosis complex (TSC) is a genetic disorder that causes non-malignant tumors to form in many different organs, primarily in the brain, eyes, heart, kidney, skin and lungs. There is much variability as to how an individual is affected, mainly based on the size and location of these tumors in the brain. Seizures are a hallmark of the disease.  All three of the kids had life threatening seizures, which, until they were stabilized, involved years of very frightening experiences.  911 and ambulance rides were frequent, visits to specialists at MGH, were and are still frequent. Surgeries, hospital stays, all the things as a parent, one fears, are part of our lives.  My oldest daughter, who is now 18, had emergency brain surgery when one of the tumors in her brain triggered hydrocephalus.  Beyond the medical issues were the early intervention therapies, physical therapy, occupational and behavioral therapies. People.  At our house.  Almost every day.  There to work with  each one of  the kids sequentially, as their issues emerged.  As I look back, I see how we were completely living day to day with raging PTSD, waiting for the next emergency, that seemed to roll in just as things were resembling normal.

As I mentioned preceding, I turned to alcohol, and then pharmaceuticals to self medicate until it became far more than self medicating and I was a full blown addict taking care of three atypical kids and one more typical child, which really has thrown a wrench in the mix.  It’s been quite a journey, for myself, my ex husband and more importantly, my kids, who without realizing it, embody a human incarnation which is and will be unbelievable challenging.  Finally, thanks to my higher power knocking willful, hard headed me, flat on my face to get my attention, have discovered my path as a guide, teacher, loving caregiver a.k.a., mother of these rare souls.  And I don’t do it alone.  They have a father, who cares. And supports them.  Regardless, it has taken me many years of suffering as victim. Poor me, sitting at the bottom of a well of pity, drowning my sorrows daily, to get this.  Thank God I did!  It’s all grace now.  No matter what.  The more I am able to open to awareness, the more I can be here, now, for them and for myself.

I am linked on Facebook to many support groups for parents of kids with TSC, which is one of the most wonderful aspects of social media, that I’ve found.  In a short post, I can share my experience, strength and hope with another parent struggling with exactly something which I’ve experienced on my journey, and vice versa.  What a gift!  This disorder of TSC affects 1 in 6000! One in six thousand is a lot.  A  hell of a lot, when one looks at the prevalence of rare diseases. These parents and kids are in pain.  It’s a cold hard rain when one receives the diagnosis of TSC in emergency rooms across the country and around the world.  We, their father and myself, are lucky.   It could have been far far worse as far as severity of the manifestations of TSC in our kids.  They are all doing really really well! Now it’s mainly guiding them through these early years to the point where they can be independent and find their own way.  I’ve learned that you don’t own a child.  They are souls that we are here to guide, as did our parents for us.  This mindfulness I’ve recently discovered has brought everything together and is the all encompassing life hack.

There is so so much more! I want to write a book.  Maybe.  I have to live life in the now and today I am not writing that book.   Today I am going for a run. I’ll begin to conclude (lol) with a line from one of my favorite poems by Mary Oliver:

“Tell me, what is it you plan to do
with your one wild and precious life?”

Peace, blessings and prayers as you reading this seek whatever might be your path while having this human experience. Thanks for listening.

Jill

 

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What is it Like Having Tuberous Sclerosis Complex (T.S.C.)

What is it Like Having Tuberous Sclerosis Complex (T.S.C.).

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What is it Like Having Tuberous Sclerosis Complex (T.S.C.)

Jill Woodworth's avatarTrue grit motherhood.

Good morning! It is a beautiful day here in Jefferson, MA, and despite the odds, I am grateful. My oldest daughter and I spend last night in the psych ER. We came home at 2am and it’s a long story, of course. I have these amazing kids who are my heroes with what they’ve been through mentally and physically. They are true survivors, blessings, given to me from above to guide and teach yet, so often, they are guiding and teaching me. My second oldest daughter wrote this little essay on what it’s like to have Tuberous Sclerosis Complex and she said I could share it, so I am going to paste it in here…

What is it Like Having Tuberous Sclerosis Complex (T.S.C.)

Have you ever thought to yourself, “Why are my siblings so weird?” I ask myself that question all the time, but I always have an explanation…

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Good morning! It is a beautiful day here in Jefferson, MA, and despite the odds, I am grateful. My oldest daughter and I spend last night in the psych ER. We came home at 2am and it’s a long story, of course. I have these amazing kids who are my heroes with what they’ve been through mentally and physically. They are true survivors, blessings, given to me from above to guide and teach yet, so often, they are guiding and teaching me. My second oldest daughter wrote this little essay on what it’s like to have Tuberous Sclerosis Complex and she said I could share it, so I am going to paste it in here…

What is it Like Having Tuberous Sclerosis Complex (T.S.C.)

Have you ever thought to yourself, “Why are my siblings so weird?” I ask myself that question all the time, but I always have an explanation as to why they act the way they do. You see two of my siblings and I have a disability known as Tuberous Sclerosis Complex (or TSC for short). This particular disability causes tumors on organs such as the brain, heart, lungs, and kidneys, it also causes seizures (Epilepsy) but TSC is different for everyone who has it. For me it causes seizures, tumors on my brain, and to have an angiomyolipoma on my kidney (Angiomyolipoma Is basically a tumor in my mind). The tumor on my brain has been stable for years but my kidney has not been so lucky. I had to have surgery on it once when I was around eight years old and again when I was thirteen going onto fourteen. Currently I am fourteen.

Only my closest of friends know I have TSC. I think that if you were to tell my other friends that I have TSC most would say “I always knew she was a little off”, In spite of all that I’m as normal as a teen today can be. I think it would be fun to meet someone outside my family with TSC but sadly, other than my siblings I’m the only person I know with TSC. TSC is complex and confusing. For one thing when I am older I’m going to have to be careful with sex because I don’t want to pass my disability to my child because TSC is genetic. I got TSC from my father. I was lucky enough to find out when I was young, my father not so lucky. He discovered he had it in his mid to late thirties. I remember having a conversation with my mother about his parents keeping from him.

When I was young my parents had a hard time with my siblings and my seizures. They went through a lot of pills and even put my on a special diet to stop the seizures but nothing worked until at last they took me off the diet and I starting taking Felbatol and load of other stuff and they stopped! I had struggled with learning and reading. I don’t remember much of this, all the things I just told you are from stories my parents would tell me. Let’s just say I’m a C average student and I’m reading at least two years above my grade level. It’s hard knowing I went through all this and don’t even remember it, but that is probably a good thing. My mother is always telling me how I would scream my head off in the car. But other than that I was a good kid (in my opinion I’m the favorite).

Someday I plan on shouting to the heavens “I HAVE TUBEROUS SCLEROSIS COMPLEX!” (in public) which probably wouldn’t matter since I highly doubt anyone (except the teachers and staff) would have any idea what I was talking about. Having TSC is hard but I’m fine with it provided with the knowledge that I have a loving family and a hope for a cure someday in the future.

thank you daughter.  I love you.

Posted on by Jill Woodworth | 4 Comments

How I want to change the world after I take a nap.

This question was posed to me recently in my email via wordpress.com, as a blog prompt.  I read it a few days ago and it has been on my mind.  As I consider writing about this topic with broad strokes or minuscule dabs, I think about my life and what I’ve accomplished and what I’d like to accomplish and want to go lie down and take a nap.  A writer should know this, I tell myself.  A knee jerk answer, on the tip of my tongue.  Thing is, I have tried my whole life to try.  Tried to be a good student, a good runner, a good wife, a good mother, a goodgoodgood person.  Now I need to try and change the world?  Yep, that nap is sounding pretty good right about now.

Ok….done with the nap.  hah.  So I let my mind wander over the ragged, tattered journey of my life and I seem to keep coming back to the one thing that has done the most to shape who I am today and how I see myself putting in my two cents.  The name for this beast I am trying to tame is Tuberous Sclerosis, a genetic disease that causes benign tumors to grow in different organs of the body.

Sounds benign, right?  Not so, not so.  The hitch is that these tumors or “tubers”, often interfere with normal functioning of whatever organ in which they present.  Take, the brain for instance.  These bad guys come in all shapes and sizes and can severely interrupt the function of the brain leading to a vast array of seizure types, cognitive delay, autism spectrum disorders, learning disabilities, ADHD, anxiety, depression….shall I keep going?  The kidneys get hit badly too.  Kidney lesions can run rampant and grow to all kinds of shapes and sizes, ultimately disrupting kidney function so badly that it is possible to need a kidney transplant.  The skin is the outward expression of this, what can be to many undiagnosed, invisible disease.  Certain skin malformations, some looking only like birthmarks, or acne, can be a key diagnostic tool when say, your husband, shows up at the hospital with your six month old baby, who is having unexplained seizures.

Bingo!  Get the neurologist on call, a wood’s lamp (can illuminate some almost invisible TSC related skin conditions) and you’ve got a family history of Tuberous Sclerosis Complex! That’s kind of how it happened to our family….unbeknownst to us, my husband had the condition and was never officially diagnosed and had few symptoms.  None that would make him overly concerned. All that to say, we’ve had a long, rocky journey with this condition and defying all odds, clinging merely to hope and faith, we went on to have three more children, after our oldest daughter (now 17), was first diagnosed.  Two more have tuberous sclerosis and our youngest does not.  All three of our kids with TSC are each affected differently, in different ways, with different levels of intensity.

My intent in writing this blog, is to share my personal journey, walking through my days, their days, our days, carrying this monster of a diagnosis, yet living with it and sometimes, some days  some moments, learning from it and thriving.  I hope to share the highs and lows, the moments of such intense pain and fear that I feel as if I wish the world would split open right then and there and swallow me up, to the high of hearing our incredible pediatric neurologist, tell me that these kids, these kids who have taught me daily, are all doing well!!

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