When asked to write a blog for this newsletter, I was thrilled. The topic, “Letter to a young TSC mom” was also exciting, I was sure it would be a no brainer, a home run, not even sliding into home. Not so much, as it is never easy, but surely on this topic, I’d wax poetic. Oh well. I started several times, even got part way, and then it all felt false, pretentious and redundant. So I scrapped it all and went for a run, my go to OCD behavior that seems to jump start something up there in my head. And it did…
So now, what I want to tell really is more of how TSC has become a springboard for personal transformation, and how I’ve come to accept what was for a very long time, a “long walk in a sad rain” (Johnny Cash). Maybe some of you caregivers out there can save yourself some trouble, too, from my experiences.
Backing up a bit, I have five kids. My oldest son, Woody, from my first marriage, is 23, married and living in China. My other four live with me in my 4 bedroom apartment in Rutland, MA. Oldest, Mary Ellen, is 18, Sara is 16, Jack (John) is 13 and Caroline is 10. The oldest three have TSC. Mary Ellen ushered in the long, strange trip we’ve had with the disease. While I hardly recall many of the emergencies that composed the early years of each of these kid’s lives, I’ll never forget the day of Mary Ellen’s diagnosis, as I’m sure, any moms newly on the receiving end of a TSC diagnosis, will either ever forget. Standing in a windowed room of Umass Hospital ER, watching Mary Ellen continue to seize, while at the same time seeing my husband being led to a dark room with doctor, who would use the Wood’s Lamp, to initially confirm his suspicions that Dad had mild TSC and daughter, Mary Ellen had inherited it. Not such a good day. Blindsided, horrified, confused.
I remember, as am sure you all do, reading everything I was given by the attending pediatric neurologist regarding Tuberous Sclerosis, none of it good. Denial kicked in. Of course my baby was not going to have these problems! No, of course not! I could surely will it to not be so. Then of course, came the the horror show of the next few years, getting her seizures under control, the many legions of medical specialists whose specialty I with which I was now familiar. The early intervention program, home therapists galore, playgroups, surgeries, medications, ER trips, etc etc etc, you fill in the blanks. Then onto the other two with TSC (“gee thanks God”…imagine childish, smarmy tone of voice), but somehow, I don’t think that’s really what you want to hear from me. You KNOW it. Personally. I can play the martyr of TSC until I’m blue in the face and out martyr all the other TSC moms and dads. But who really cares who has it worse off? And these days, I’m humbled, almost on a daily basis, by the trials and tribulations of those I with whom I am friends on Facebook, who have children with far more intense issues than I ever experienced with my TSC kids and who handle it all with grace, dignity and humility. So who am I to toot my own stupid martyr horn anyway?
I think, upon receiving the diagnoses back in 1996, I too wanted to rant and rave about my misfortunes with the condition, the anger, guilt, fear and overwhelming sense of injustice that now colored my world. Now I understand that too was part of my grief process. It was more of a relief when I found a group of others on a ts list serve that really truly understood. This was all we had waaaayyyy back then, an email group/chat group, kind of thing. That was the first time I felt less than alone. I’d also decided that my husband, who was working full time and in law school, was not going to have to deal with any of this TS business. After all, it would be far too much for him to handle, with he being the genetic donor, AND breadwinner. Don’t do this. No matter how difficult it may be if one or other of you parents are the carrier, or merely caregiver, keep the other involved! Go to doctor appointments, meet with therapists go to IEP meetings, together. It’s crucial to share the challenges and not hog them all because hogging them all hurts both partners. It didn’t play out so well for me and my marriage so in retrospect, speaking to this captive audience, just plain suck it up and share the pain. Even if your spouse is not able to participate in everything do to employment needs, talk about everything regarding everything regarding your child, as you would a typical child. You can’t do it alone, even if you think you can. I assumed it would be too much for him, when I didn’t even ask.
So I was able to connect with a few women who had children with TSC through the TS Alliance. It was called the NTSA back then and was really just ramping up. I met with these 2 women, with our kids, many times in those early years when I just had Mary Ellen, and have stayed in touch, to a degree, with one of them, ever since. They were a life line. As was our pediatric neurologist, Dr. Elizabeth Thiele. She discovered me after I’d had my daughter Sara and was barking out orders to the interns at Beth Israel Hospital in Boston, regarding the tests my daughter needed. Dr Thiele had just been hired to start a Tuberous Sclerosis clinic at Boston Children’s Hospital, and was actively recruiting patients. I’d had a male pediatric neurologist at the time, but from the first appointment we had with Dr. Thiele, she was our doc. I felt like she was God.
I sat in a small office in some back corner part of Children’s Hospital to meet with her. I’d just learned my daughter Sara, an infant, was also having the nasty infantile spasms that Mary Ellen endured. I was at my breaking point. Mary Ellen’s behavior had become a huge stressor, she was at that very appointment, throwing herself around and banging her head on the floor, like a raging bull. I sat and cried, Sara in my arms, Mary Ellen freaking out, and Dr. Thiele heard me. She didn’t tell me it would be ok. Never has she done this. She offered what hope she had at the time, gave me a bit of a plan and I think she shed a few tears herself. This is what I love about her and I encourage as many of you out there as possible to seek out this sort of level of compassion and humble intellect in your treatment team. I like to think of myself visiting her and tossing all my worries, fears and concerns right on over to her, then walking away with at least a bit of a lighter load. She has made this disease seem not only bearable, but on some levels, fascinating and understandable to a lay person like me. Plus, her love for my kids, shines through, clearly.
Sheesh, this is getting arduously long. Keep with it. This final part is the train wreck, so don’t look away yet….As the years went on, there were many ups and downs with my kids and their TSC. My best moment by far was getting the call from the local geneticist that my fifth and final child, did not have TSC. I fell to the floor and wept. In gratitude….to that higher power I like to call God. My worst moment was of my own making, from which I’d like to save you young TSC moms the trouble of enduring. Yet, cannot really save you, but maybe let you take note of my experience.
I decided that the stressors of taking care of my precious gifts of children, with and without TSC had driven me to the brink of sanity and the only only possible adequate course of action that would steady me enough to continue on this ragged path that I’d been set upon, was to drink like a fish and abuse pharmaceuticals on a daily basis. I started drinking and dabbling like a lady, but soon enough was like a wrecking ball, justifying each and every drink and pill, completely and unabashedly justified. Seeing MY life circumstances. After all, wouldn’t you? My friends all told me they’d drink every day if they had my life. Somehow, I failed to notice, that they didn’t have my life and they drank almost every day anyway. Hmmm, good mentors?. I thought I was all that, the super mom that took care of her kids with issues, and the crazy party mom that just liked to play hard. Trouble is, party moms under the influence don’t make good decisions about pretty much anything and I fell victim to my own habits. I blamed TSC, my soon to be ex husband, my childhood wounds, everything and everything I could think of. Every TSC event was reason to fall deeper into the pit of addiction. In time, I was living a lie, a phony lie of pretending to be super TSC mom when I was really just not-so-super Jill, addict/alcoholic. The phony police, disguised as my ex husband and a close friend, (thank God for them) sent me off to get help and that was the turning point for what is now becoming on a day at a time basis, a life beyond compare. In some time, I found myself and thus am now present, fully present for life, despite the daily challenges of life, let alone caregiver for children with TSC .
What I feared in those early moments, that “this won’t happen to my kid…” has happened. Many times. The seizures, the facial manifestations, the compromised kidneys, intense pharmaceutical treatments, surgeries, developmental delay, etc. You name it, it’s happened. But it wasn’t ever ever as bad as I thought because it’s truly as it should be and there is nothing other than educate myself, seek out the best doctors and treatments and pray, to anything bigger than myself. Oh yeah, and there is the praying, mostly just praying like a soulful pleading, “Help!!!!!???!!!”. A good number of you know this prayer.
But don’t let me fool you, I still have my moments. You all know those moments. When no matter how soulful and steady and at peace you are, some new TSC related challenge rears it’s ugly head and you feel that white hot flash of rage pass over you. This is when I want to lash out, at anyone and everyone near and far for the pure injustice of this disease, I want to get in the car and drive to Key West and start my life over. Mostly, what I end up doing is weeping. Weeping for the pain and anguish my kids must suffer at the hands of this horrible disease, weep for my inability to fix them.
So it is we mothers and fathers of these kids that must eventually hand the baton to them. This is our mission, so to speak, or my mission. To give them the opportunity to become as independent as possible, to know how to care for themselves. For some, this task may not be a possibility, given the measure of manifestations in many with TSC, and my heart grieves for you. Yet know that I am inspired by your daily fortitude and honesty, as read in posts on Facebook and elsewhere, so do know that you are doing for me, what for a long time, I could not do for myself, and thanks. I guess love, for me, is the answer. To find the space within myself to love the unthinkable, to accept that why they must suffer is beyond my comprehension, yet to find some measure of gratitude, even if it be for a peaceful minute at a time, it’s there and thank God I found it and can be there in mind, spirit and body for my kids, for just another day at a time.