Bridge Over Troubled Water


I think one of the most difficult things about managing a chronic disease in the course of my lifetime for my children with and without TSC, and various other family members, is being continually called to be real and face reality in a world of chaos and confusion that often accompanies a TSC diagnosis. For years, all it seemed I wanted to do was run.  Escape.  What I mean by being real is merely the ability to be there in the experience with whichever kid or person is going thru some suffering and really let myself feel it. Feel all the fear and chaos, feel the weight of sadness for this being that you’ve helped accompany into this mad mad world, when you have half gone mad yourself and are holding on, kicking and screaming, daily, to your sanity.  And letting sanity go on occasion. It’s hard to face it.  To accept it, the diagnoses and manifestations, over and over, and all the fear and complicating emotion and feelings that go with it, let alone manage it.  It’s a shit storm that I had to survive.  I signed up for it, I knew I could do it, but that was the long game I couldn’t see I was playing at the time because I was trying so hard to just keep my kids and myself alive. 

I will admit, surviving meant a dip into the realm of moral apathy that the uncertainty and unrelenting life-threatening nature of TSC can trigger. Seizures in TSC, particularly when a child is growing and developing, can run rampant and wreak much havoc on a child’s development and ability to learn and develop.  Getting control of seizures is tenuous until the right combination of medications or other treatments finally provides relief.  For some, this never completely happens.  The horrifying, and life-threatening experience of witnessing status epilepticus in one’s child will forever haunt and hang like a dark cloud over every single aspect of the existence of those involved until seizure control is gained.  It’s PTSD, IMO, and can leave permanent scars on the psyche of all involved, from affected child, parent, grandparent, friends, and neighbors witnessing as well.  It sent me down a dark path that I’m still making sense of to this very day.

When I was personally moving from surviving to some level of awareness and recovery, I had to cut myself off from almost everyone I had grown to know and love during a very chaotic period of my personal life, in an effort to heal and rebuild the shambles of what was almost an apocalyptic experience. Part of the 12 step recovery group with which I’d aligned myself at the time, has this tenet about changing playmates, playgrounds, and playthings after coming into the halls. While this is great advice, especially in the road kill phase of recovery, when you’re still raw and quivering with fear of any kind of sober life, it’s best to keep good boundaries with those people places and things that might lead you to believe that it’s ok to venture back.  But this is almost a misnomer. I understand the intent, it is pure and helpful in its simplicity, but like a lot of the 12 step literature, “it’s simplicity” can be a downfall. Not for many, but for some, and unfortunately, or fortunately, depending on how you see it, for me.

 So there I was, it was about 2005-2006.  I was almost 40 years old, mother of 5 children, divorced once, let go of custody of my firstborn, remarried and had 4 more children with my ex.  Nuts.  Surviving. My youngest child was just cresting two, and then it went agewise; 5, 7 and 9 or something like that. with my oldest son that I missed dearly, dropping in and out of my life, as I could wager the energy to face.  I was isolated, exhausted, lonely, and seeking.  I’d been trudging through the trenches with the kids and trying to care for them and help my ex start his solo practitioner legal practice, wrangling all the medical care and emergencies and school issues and shopping, cooking cleaning?…. I had little time for friends.  My father had passed away in 2004 after a quick and horrific decline brought on by frontotemporal dementia. I was drinking moderately, taking my psych meds, trying to run and stay afloat. But part of me was wailing, screaming, crying on the inside at all the many injustices and concerns I had for my kids, my relationship with their father and for my own self deep within.  I kept having to bury it. I am not good and lying and hiding. Just ask my ex who almost always found my empty booze bottles and various other paraphernalia I fiendishly hid during those years of mounting desperation, compartmentalization.

Mostly, as I forgive myself repeatedly for my actions during that time, I am reminded of the nature of TSC and TAND (TSC Associated Neuropsychiatric Disorders) Shit. I married TAND.  We had no idea, nor did anyone else, how much our misunderstanding and lack of communication about managing TAND AND TSC in the kids in the parents, in the grandparents, fueled the mounting addiction problems, anger issues and all the other ancillary crises that come along with not being able to adequately express the feeling of “I need help and have no idea how to manage my life with these kids and it has become too much”. Escape, denial, etc ran rampant,  but as with everything we experience in life, it was not all dark and an attempt to paint it so would be to create an inner disconnect with which I cannot live.  I think if we’re not careful in the management of TSC, we all get a degree of TAND whether we have TSC or not, just from the weight of daily reality dealing with these TAND behaviors.

I was called to remember that there were also some good times, some good things and some interesting, exceptional people, that I had cold clean ditched on my way to trying to cage myself in and rewrite my own history in such a manner as I would effortlessly float through all emotional and other baggage on my path to happy destiny. Bullshit. Nothing is ever simple for me. I continue to “recover” which has come to mean simply (though it’s never simple) trying to do better, pointing the compass a few degrees closer to true north and moving forward. A day at a time. So much I did learn from the many wonderful souls I met in the halls, but I just couldn’t hang out there forever and visiting is confusing right now.   

I had set an internal intention that I would find a way to reconnect with someone from across the street in our old neighborhood.  We certainly partied a lot then, but also, we bartered with each other for daycare, barn building, swam in their pool, ate each other’s food, went on vacations together, spent many an evening drinking and laughing, planned parties together, and basically had each other’s backs. I ended up watching one of the neighbor’s kids, Abby before school so my neighborhood friend and her husband could get to work.  What was it to me anyway? Their kid was a loving handful, but also she played with my kids and I was home anyway, so it seemed like not a biggie and it wasn’t.  Except I was forced to care for someone outside of my family in a deep way that I wasn’t completely aware of at the time.  I was keeping the window of “real” slightly open.

Abby and I connected a bit on FB, and she started listening to my podcast and like the outgoing Abby I used to know, suggested she might be an excellent guest.  I have an inkling she’s going to be right.  She’s coming over soon to do this podcast episode in person and talk to me about her experience of TSC in the lives of my children during that very chaotic, but very important time period in our lives.  I find myself quite excited but also a bit anxious as she is the first person from what I thought was my abandoned past, to cross the bridge herself and take the risk of reconnecting after the passing of time and all the changes pertaining to our mutual paths.

So, I hope the podcast is awesome but more than that, I am grateful for her being real, taking a risk, being willing to walk back into our lives and declare her ongoing love and concern for our family, despite all the chaos and drama that occurred in the wake of living and learning and understanding the weight and consequence of living with and managing a chronic disease such as TSC.  Welcome back, Abigail Picard.  I can’t wait to hear from you!

Posted in #IAMTSC, addiction, autism spectrum disorder, Buddhism, cannabis, Eckhart Tolle, epilepsy, Infantile Spasms, marathon training, medical conditions, parenting, Ram Dass, recovery, special needs, Tara Brach, tuberous sclerosis complex, Wheaton College | Tagged , , , , , , , , | 1 Comment

Let’s get together and Podcast!


How podcasting can build and gather information and motivate change within communities affected by rare medical diseases

Creating podcasts within communities affected by a particular disease, and initiating the discussion between parents/caregivers/patients in an interview format, is a progressive way to gather novel and unique information regarding the reality of living with a particular disease. Listeners can now hear how the medications and treatments prescribed or recommended, are actually experienced by patients/caregivers/parents. By listening to the voices of the patient population for which these medications and treatments were designed to help, particularly in an audio format with no visual distractions, much information can be gleaned that could be quite valuable in developing more specific, targeted treatments and medications.

The development of interview questions needs to be specific to the patient population for a particular disease in order to solicit adequate responses. This combined with actually hearing the human component in the voices of people talking about their experiences, often including much frustration and suffering, gives one a far more personal look at the lived experience of having this disease. The podcast model can better inform those listening that provide services to these populations more personal human insight and a shift in perception of what needs are imminent to this community
Check out the latest episode of TSC TALKS , Episode 10


The brave and articulate Renée L’Heureux talks to me about her experience of a TSC diagnosis at 39 weeks of pregnancy and the multitude of experiences and feelings that are a part of this particular TSC journey with her son Aaden, who at 10, is non-verbal.

I was blown away by Renee’s steady voice throughout, and her ability to continually make choices that reflect much maturity and strength in order to provide the best care for her son, despite her life circumstances. I truly hope other TSC Moms will give it a listen as it is much relevant for those just receiving a TSC diagnosis as well as for those more seasoned vets among us.

There is a lot of information to unpack and some highlights to listen for in particular are her experience with Vigabatrin and Infantile Spasms, the experience of getting approval and funding for brain surgery and the hurdles and barriers involved, ADHD symptoms, as well as impact on family, siblings, working with the school system to advocate for and support a child who is non-verbal, and much much more!

Renee hails from Winnipeg, Alberta but currently lives in Airdrie, Alberta.She discusses some of the differences in the Canadian healthcare system and education system. In light of our rather chaotic US politics lately, listeners take heed.Tune in this coming week for an episode with a school psychologist as well as a woman with TSC running Marine Corp Marathon for Team TSC, and on the ketogenic diet for seizure control… with lots more to come!

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

TSC & Mental Health

Recently, I was driving back home to Massachusetts from Connecticut with my three daughters in the car.   My 22 year-old daughter moved into a shared living situation last April and this was the first trip we’d all made out to my mom’s since she moved out.  I happened to be the one with the mental health issues this time, and for some reason driving home at night on the mass pike was almost more than I could handle.  I was overcome with anxiety.  I am not sure what it was, lack of sleep, combined with a bracing awareness of what’d we’d all been thru together and now here we were with daughter #1 back in the car, using all her ASD related coping mechanisms which never used to bother me. This time, I was gripped with almost panic! Somehow, I grounded myself by staring at the Wegman’s truck directly in front of me and prayed.  Thankfully, we made it.fb_img_15327997806031

The neuropsychiatric aspects of a disease such as Tuberous Sclerosis Complex can be crippling.  What is TSC?  Click here.  After much-lived experience in dealing with TSC related mental health issues, also known as neuropsychiatric issues, as well as my own refractory and integrated mental health issues. I am quite familiar, almost comfortable discussing.   Due to the nature of TSC manifestations, particularly brain manifestations, these issues are almost unavoidable.  In fact,  I heard it tossed out by several different specialists, of the MD variety, that 90% of those diagnosed with TS, will be affected over the course of their lifetime by some level of neuropsychiatric issues.

Speaking of which, I was glad to attend some of the TAND (TSC Associated Neuropsychiatric Disorders)  seminars given by Petrus DeVries at the World TSC Conference last month in Dallas, TX. Dr. DeVries developed the TAND checklist.  This happens to be a phenomenal tool be given to all who receive a TSC diagnosis and then again screened at every office visit.  Beautiful!   I sat through the seminar with my jaw down around my feet, as it was almost a play by play guidebook, listing the multiple and many psych related issues with which we’ve dealt in the course of our family’s TSC challenges. I wish it was around when my kids were younger as I’ve mentioned, the mental health issues we’ve encountered both related directly to the neuropsychiatric manifestations of TSC as well as the fall out of managing these manifestations across the entire family, has been daunting.

It ain’t always easy to ask for mental health help over and over again and tell the story of TSC to unaware mental health professionals!!  I vehemently encourage anyone involved in managing a TSC diagnosis to put a premium on their own mental health and be screened as well as their loved ones with TSC.  Carry the TAND checklist everywhere you go

Parents, caregivers, other supporting players; If you don’t have your shit at least somewhat together as an individual and/or as a partner on this path of managing TSC, in whatever capacity, it behooves you to consider doing so. I don’t mean run right out and find a therapist, though that works too, at least make a mental note of this. The weight on relationships and a human, in general, can drive one not prepared in directions that one would never have imagined, and thus make it more difficult to be there for ourselves, and our loved ones with TSC. Talking about it out loud and knowing it is not all in your head and supporting each other are places to start.

It is this particular nuance of the overall cause of TSC awareness, that will be my personal platform for asking for contributions to theunnamed Marine Corp Marathon fundraiser I’m involved with as Team Ambassador. The carnage of my own PTSD and depression leaves me with a treatment program of proceeding one day at a time, staying grounded in the present and not allowing myself to be overtaken by past horrors, or projected future catastrophes.

As I’ve mentioned in past blogs, running as an outlet has been another tool that has been integral in my being able to manage the constant stress of dealing with uncertainty, that is TSC. I tend to bust out to run almost every day as I never know what potential crisis lurks in the shadows of the next 24 hours and having a good hard sweat under my belt, somehow helps tame the demons and wrangle the thought tangents that run rampant if left unchecked.  

I have asked for money for this cause in the past (Boston Marathon 2016) and have been the recipient of an outpouring of love and support over the last few years.  I’ve worked diligently to help my children with TSC gain the medical and psychological stability to each be able to overcome some incredible challenges to their physical and mental health and stand strong enough to start to make the journey to some level of independence.

I am grateful and pleased to report that they are all doing well! We have challenges every day in relation to some TSC related issue or some other life-related issue, but don’t we all have some kind of monumental challenge daily? I am often so inspired by others when I get the time to make a connection and hear that while not the same challenges, so many of us have overcome significant roadblocks to be able to thrive and contribute to their own realities, daily.

I am asking for your help. If you can support our fundraiser at this time, it would be wonderful. If you cannot, or already have, thank you and keep on praying for us. I would say faith has been an instrumental part of this journey for our family. The love from the local community, from behind the scenes, including social services, physicians/specialists, the Wachusett Regional School District, friends from past and present and of course, family and my soulmate. We couldn’t do any of this without you and let our cause be your cause as it is one that if a cure is found, has the potential to impact the outcomes for many other diseases and could truly bring much health and healing to many!  Thank you isn’t enough, so stay tuned.  I have a plan!

Click here: Health

 #mentalhealth #IAMTSC #TAND #Autism #Epilepsy #specialneedsparenting


Posted in #IAMTSC, addiction, autism spectrum disorder, epilepsy, marathon training, medical conditions, parenting, special needs, tuberous sclerosis complex | Tagged , , , , , , , , | 1 Comment

#worldTSCconference 2018 and the Power of TSC Moms

FB_IMG_1532882506319I had a bit of a re-entry crash on Sunday when I got home to Rutland MA. I had attended my first ever World TSC Conference in Dallas TX for the past 4 days with my mother. If you don’t know about TSC, click here.  From what I learned, we are on the cutting edge of not only better diagnosis, treatments, and management of the disease but also finding a cure. The conference was ineffable, and I am forever moved and changed as a human being for having attended.  I echo the sentiments of so many in these TSC related forums in their awe, respect, and inspiration for the TS Alliance and the incredible momentous effort involved behind the scenes making it look smooth as butter.

I had made plans to come to the conference and applied and received a scholarship but had put it out of my mind. So much else had been going on in our lives that I absolutely couldn’t even think about the World TSC Conference way far away at the end of July.  Well, it came round and was almost time to go and suddenly, I didn’t want to.  I’ve been a TSC Mom for 22 years, and have 3 with TSC and I didn’t want to go. “I’m a freak”, I thought, among other fear-related ideas.   I dug in. I had decided in my obstinate, resistant way of thinking, that I had had enough of TSC, didn’t want to talk about it, think about it or hear about it any more for as long as I lived beyond what was necessary, and I was going to get a job and work and deal with the kids and their issues as needed, but really focus on my here and now.  

The weight of TSC has been monumental in our lifetimes, as I’ve shared repeatedly, and was more keenly aware than ever, the significance and difficulty of with what we’ve been dealing when my oldest with TSC, MaryEllen,  moved out in April to a shared living situation.  One kid leaves and the filing cabinet that represents their TSC journey partially goes with them. Suddenly a light comes on as to why it’s been such a struggle.  Anyway, I knew deep down, I had to go. So, with much encouragement from friends and family, I got on the plane with my mother and jetted off to the Big D.

Shortly after entering the breathtaking hotel, and seamlessly checking in despite having to update and change things related to my reservation down to the last minute (thanks Christen Bell), I sat down in our room and related to my mother that I wanted to go home. It once again felt like it was too much.  I was freaking. My mom left me to my doldrums and I knew I had to switch the narrative and go join these people and engage. Every part of me was resisting. While I may appear to have it all together, successful runner, TSC volunteer, my children with TSC doing pretty well, behind the scenes there has been great personal cost and it hasn’t ever been easy.  

Meeting people on FB and then meeting them in real life are entirely two different things. I came smack up against this in the hotel upon first arriving when I saw many many people I recognized from FB, knowing many of their personal stories, and they knew mine.  I wanted to hug them and at the same time also, run and hide, which, as I mentioned, I did for a bit.  It was too much at first.  Periodically, throughout the conference, when things became too much. I took breathers and went to the room to chill, cry, reorganize my emotional state, and venture out again.  It felt at times like I was reliving the diagnosis and manifestations of all three of my children with TSC as I sat through seminars and while it was a necessary process in order to properly engage, it was a bit rough on my ragged heart. 

I’m glad I pushed through.  It was amazing. I have never before had such an experience where everyone there had passion, vision, energy, and motivation cumulatively coming together for a mutual cause, and celebration of our successes as well as an honest look at where we can all do better.  The ego-driven nature of today’s society, online and otherwise, was refreshingly absent and all you had to do was walk up to anyone and ask, “What is your TSC story?” or “What is your TSC connection?” and immediately you were engaged in a conversation.

We flew out early Sunday morning and I actually had to utilize the vomit bag on the plane.  Gross. I know. That never has happened to me! As well, when we got back to my mother’s car at Logan Express in Framingham, she had a flat tire.  Not only once in the parking lot but then again once on the mass pike. Thankfully, we made it home in one piece, albeit a bit ragged and exhausted.  I was on edge and still wasn’t quite ready to go back to my responsibilities. Perhaps our tenacious trip home was a reminder to take the time to reflect on the experience to relate to you all.  

My son Jack with TSC, my ex-husband and boyfriend/partner who wants us to use the language “soulmate” (seriously, he said this), had had a “minor snafu” with Jack’s meds, and there was no clear knowledge of what had been taken when, and exactly what meds were taken.  I wanted to flip.  Despite having this all this set up before I left, I couldn’t account for every circumstance, nor expect everyone else to and sometimes that is just the way it goes, especially, dealing with the nature of uncertainty and TSC with which we must deal.  Jack was just fine, despite a day or two of sketchy medication management.

Of course, I wanted to start a rant in my head about no one but me being able to care properly for these kids and blah blah blah.  But I didn’t. Because it isn’t true and what I’ve learned, and if there’s any one thing I have to share from all this lived experience as a TSC parent, is I cannot do it alone, and these kids can learn to do much for themselves.  We all need much help from many, and that includes all the medical and psychological professionals, social workers, family members, soulmates, exes and their support people, and of course the TSC community. The list goes on and on. Being willing to risk asking for help and holding those from whom we’ve asked, accountable is another lesson to learn from. Email groups and FB pages and networking events such as this conference have solidly contributed to my ability to manage this experience.  

My partner took one look at the conference agenda and said, “you could have led every one of those sessions”.  Hah. Maybe. I honestly could have given input at least at all the ones related to living with TSC, relationships, siblings, and have experienced just about 80% of all the TSC manifestations and other related medical and psychological fall out related, and that is not an ego trip.  It is simply true. We have lived and learned and been lucky, unlucky and all the points in between in this journey. It was nice of him to notice and for me to have that level of support and understanding.  

In conclusion, if I didn’t connect with you, I’m chicken shit for missing the chance and apologize.  I saw many whom I recognized and still wasn’t able with which to connect. I was not always as approachable as I would have liked.  I could shoulda woulda coulda myself to death over all of it but I won’t because I think it was like this for everyone and is the nature of such an event.  Those who I did connect, thank you. It meant more than you realized.  You know who you are.

Two days out, my heart is full and I am now officially glad to be back as I slide into the work week and am uplifted, strengthened and buoyed by the energy and memories of this event and all of you TSC Moms out there who are doing your very best every single day, whether you feel like you are or not.  You are. It’s never easy, this journey is hard, but it’s worth it. I love you all. Seriously.


Posted in tuberous sclerosis complex | 6 Comments

Team TSC & The Marine Corp Marathon

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

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

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

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

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

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

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

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

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

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

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


Team TSC local!

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

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


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


Email info:  Me,,

TS Alliance:

Tuberous Sclerosis Complex:

Facebook page:

To Donate:


Posted in #IAMTSC, addiction, autism spectrum disorder, epilepsy, Infantile Spasms, marathon training, medical conditions, parenting, Ram Dass, recovery, special needs, tuberous sclerosis complex, Wheaton College | 2 Comments

Dear Wheaton College,

Hi Fellow Wheaties, class of ’88,

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

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

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

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

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

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

Jill Woodworth, B.S. 1988

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

What Tuberous Sclerosis Complex taught me about love

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


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

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

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

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

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

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

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

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Posted in #IAMTSC, autism spectrum disorder, epilepsy, Infantile Spasms, medical conditions, parenting, special needs, tuberous sclerosis complex | 4 Comments

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.


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