I 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.