Day 16 of Blogging for TSC Awareness
by Victoria Newberry (Texas)
As I prepare myself to write this, I thought about how to represent my son and I realized that I can’t do it. I can’t write for my son because deep down I am still hoping that he will be able to do it on his own one day and I don’t want to take that chance away from him. So this story will be about me, about a first time mother who came face to face with this unknown called TSC.
We waited a few years before deciding to have a child. As the youngest, I’ve never been around pregnancy or babies. Needless to say, I was nervous. I joined a pregnancy website, read anything and every thing, went to pregnancy classes; I even interviewed doctors to be my son’s pediatrician. When he was finally in my arms, it was the happiest and the scariest moment in my life. I was, and still am, responsible for this tiny human being. I was a mother. The pregnancy website continued to be an infant “guide”. When they should be doing this or that, what you should be doing this day or that day, what exercises to do, what to feed, everything was planned. Then, he developed severe eczema at 2.5 months and I felt my world shattered. I did everything right, didn’t I? Did I use the right soap? Detergent? Did I let his skin get too dry? I kept on blaming myself, I got angry a lot, I was frustrated. Looking back, I think this period prepared me to face what was about to happen in a few months. My control-freak self would’ve lost her mind had it not been for this “transition period”.
March 2014, we got our diagnosis, my son has a genetic disorder called TSC, it’s incurable. I remembered feeling numb, my head started organizing my thoughts. That’s how I cope: I analyze, I make plans, I figure it out. I asked for an explanation on what we would be expecting, how wide is the spectrum, what’s our game plan, what do I need to do in the immediate future. I had to get into action cause I knew if I stopped to think for a second, I would break down. I allowed myself to cry one time when it was just me and my husband, our son asleep in the metallic crib. I started reading about the disorder, gathering all the information I could to prepare me for what was to come. Joined facebook groups, talked with other parents in the same boat, trying to somehow convince myself that it will work out.
One year later, I’m a changed person. We never got seizure control, except for a few weeks earlier this year, after going through 6 medicines in different combinations, and I’m okay. My son is severely delayed and we recently had to put in a feeding tube because it was not safe for him to eat by mouth, and I’m okay. My days are filled with therapies, doctor appointments, keeping a journal (seizures, sleep, feeding, diaper count, body temperature, etc.), and working with my son at home. Guess all the skills I learned being an admin paid off, I have excel sheets full of tables and charts. My smartphone calendar became indispensable. I learned to let go of things I can’t control, and to maximize my efforts on things I can do something about.
I learned to not let fear of the unknown conquer me. Sure I get stressed out every now and then, and I feel like I sometimes I can’t breath, but then I gather myself together and put a smile on my face. They say a smile goes both ways, sometimes it comes from the heart and other times it warms the heart. I smile cause my son needs me, I smile cause my husband deserves support just like the support he’s given me. I refuse to drag them down in my sorrow and frustration, so I learned to let go. I learned to fight the battles that can be fought, and not worry about those that are not here yet. It doesn’t mean I don’t prepare myself for them, for the chance that my son might develop a new type of seizure one day or that he may never be verbal, but we’ll cross that bridge when we get there. I learned to trust more in my support system, to listen to their counsel, to be open to suggestions, to accept help. I am alone, yet I’m not lonely in this journey.
TSC made me a better stronger person. I just wish that it didn’t have to be at the expense of my son’s health. I am hopeful still that he has a chance at “normalcy,” but I’m prepared to face whatever comes our way. After all, what is “normal?” Merriam-Webster defines it as “usual or ordinary.” Life with my son is our “normal” and I wouldn’t have it any other way (well, that’s a lie, I would want him to not have TSC). You may be in our lives, TSC, but you do not define who we are!