Jill's Tuberous Sclerosis Complex Journey

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I’ve been thinking a lot lately about my role as a caregiver over the course of my life, in particular, in reference to my 3 children with 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.    I know what you’re thinking, “3 kids with TSC? … what??” Yeah.  And an ex-husband, his sister, and her two kids with the disease.  My ex-husband’s father had TSC and we think this was the first case in the family.  Not much was known back then about the genetics of Tuberous Sclerosis and his manifestations of the disease were mainly intractable seizures starting at age 40 onward.  Anyway, that’s the background, now here goes a glimpse:

Recently, I was driving with all 4 of my kids plus my oldest daughter’s boyfriend, to boyfriend’s house, then onto my mother’s house in Connecticut.  We were about halfway to his house, when boyfriend asked me, “is something wrong with Sara?”…I immediately looked in the rear view mirror and noticed she was making some odd noises and moving in an awkward way.  Suddenly, it dawned on me that she was having a seizure.  I knew I had to take action.  By the time I found a safe place to pull over, just past a rotary, she was seizing violently, full blown tonic-clonic.  My other children, particularly my ten year old daughter, were freaking out.  Freaking out as in sheer terror. They’d seen seizures before, but none quite this dramatic.  Anyway, I called 911 and got out and opened the door to hold my seizing daughter.  Emotions flooded through me that I hadn’t felt in years.


I spent the many years of the lives of each of my TSC children, in almost weekly crisis of some sort, but things had been quite calm for a good long time.  As well, seizures when a child is 50lbs as opposed to when one is 125lbs, are quite different.  So, as I held her in this rush of emotions and while waiting for the EMT s, my “superwoman” powers kicked in … I have always been good in these crises.  I don’t know if it’s a gift or just because I know that panicking will only increase the anxiety of everyone involved and I need to be stealth, calm, zen-like to get the necessary information to the medics, and to the doctors and nurses to get my kids the best help they can get.  I’ve immersed myself in learning about their disease and have a good medical background regardless, so I guess I’m well suited for the job, if anyone is truly well suited to handle crises situations with their children.


So as I said earlier, it had been years since the last crisis situation.  These stretches of calm almost lulled me back into a bit of tainted hope that maybe the last time was just that.  Sara stopped seizing by the time we got to the ER, the local ER, not our regular ER, where I had to explain in depth the medications given to Sara, her medical history and her long list of allergies to medications.  With each of my TSC children, it’s been a journey.  Despite the long calm stretch, all the memories of my life with total TSC PTSD came in a few moments, flashing back in full force again with the utter weight of despair and sorrow passing over me.


I think it’s a form of grief we parents of children with TSC go through as we watch, somewhat helplessly, often with hands tied, our children in medical crisis, who without medical intervention, would probably be dead.  I’ve followed a path of escape into alcoholism and addiction to cope with the ongoing stress of my day to day life, but that’s another story. Thank God, and/or a higher power that I made it back from this lengthy, painful side trip and have in the process of saving myself, discovered a new perspective on my children’s needs and challenges. This has truly been an unexpected blessing. The grief I feel now is different as I know it is merely a big wave in the ocean of life that will smooth in time and having just that space and viewpoint, is enough to cope.


As I held Sara on the side of the road, while the other kids were out of the car, in tears and/or helplessly watching, I made the picture bigger in my mind.  Fact…Sara was having a seizure.  Fact…Medical help was on the way.  Fact…She was going to be OK. She was not going to die.  Today.  Maybe she will die at some point, maybe one of the others will, but it is not for me to decide.  I am here to be their mother through all of it and I have come to terms with the prospect of losing one of them as in many ways, their medical condition makes them more vulnerable.  Yet, with vast progress in medical research and technology, this most likely, won’t happen.  The odds are not that different than for my typical daughter as long as I keep on the front lines of the research being done, communicate with their amazing neurologist, and together, make the best choices regarding their medical and emotional care.  One by one, I will teach them to do the same.


While it is truly a gut wrenching juggernaut, that of having a child with this genetic disease of TSC, and while I don’t like it, I must accept it.  There are more lessons of grace and dignity I have learned with and through these children than I ever thought possible while standing in an ER about 18 and a half years ago listening to the neurologist diagnose my seizing daughter, and thinking my life as I knew it, had taken a horrible screeching hairpin turn in the wrong, wrong, wrong direction.  It did undergo a turn, but in the meandering and craggy path of life that we all wander, I’ve found far more peace in allowing myself to learn from the broken pieces of my life coming together in a different yet more graceful way than I ever imagined, than living in a state constant fear and turmoil, waiting for the next shoe to drop and my heart to break all over again.


From participating in several online support groups for those involved with everything from caring for TSC children, to adult individuals with TSC, I’m astounded at the multitudes of parents and other caregivers coming out of the woodwork to share their stories, ask for help and reap from others knowledge of and experiences with this disease.  The often desperate yet honest and supporting forum has inspired me to utilize my most recent experiences with mediation and mindfulness practices to cope with my own stress, and possibly, in the future, help others, whether online or in person, tap into this sort of newly popular set of tools.  I was led to mindfulness by a friend, and have explored it independently for some time now.  What is mindfulness?  By definition, mindfulness is “the intentional, accepting and non-judgmental focus of one’s attention on the emotions, thoughts and sensations occurring in the present moment” (Wikipedia).  Originating from the Buddhist tradition, mindfulness offers a more secular approach to meditation and other helpful focusing tools and techniques.  I plan to take a MBSR (mindfulness based stress reduction) class starting in January, and am hoping to gain and utilize new tools with an ongoing goal of growing in my ability to cope personally as well as assisting others cope with the constant demands placed on we caregivers,  mothers, and fathers dealing with the unpredictable, ongoing nature of TSC.

You can learn more about Jill on her blog and connect with her on her Facebook account. 


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