From time to time I think of me, my interactions with the world, what is different about me.
I have been a mom of a physical child for about ten years now. With Sara I was your first time mother, bragging, competing about potty training and her other milestones. I was never one of these intense helicopter mothers frantically sterilizing everything. I pride myself of having hobbies other than my child and I enjoyed spending time without her, treasuring the me time. I could hold a conversation about various topics, even thou eventually we all ended up talking about our kids, because they were just major part of our lives. You can’t escape that.
Being Tomas’ mom is … I really don’t know what to call this state, surreal, exhausting, frustrating, emotionally draining, rewarding in a bizarre way? You pick.
He is his diagnosis in all conversions. He has a sweet, laid back, with hints of his sister’s intensity, nature. But that’s pretty much it. He doesn’t do anything typical child would do. So this line of conversation gets exhausted pretty darn quickly. His diagnosis is a conversation filler, his procedures become his milestones. I find myself unable to stop the explanation of brain function biology lesson shtick. I guess the unconscious strategy is to make my audience overwhelmed by all the facts and latest research that they forget to ask all the questions that make me burst into tears. Recently one person did not follow the usual script of these conversations, I have a feeling she wasn’t really listening to my lesson, and when I paused to take a breath she went; “And how are you doing?” I lost my shit right there and then. How exactly am I to answer that? I’m stuck at home with no income doing all the Physio, vision, occupational and god knows what else therapy with my baby that looks at me for one second if I’m lucky. There is no progress to report, so I fill my time researching every drug and supplement I come across on the various forums of parents with epileptic children, hoping to find the magical pill that will fix my son. Seriously, what do you want me to say to you?
I realize that the title is not really relevant. I haven’t lost myself, I’m avoiding myself, because myself comes with memories intertwined with my dead child and right now I just can’t go there. The precarious balance somehow achieved was upset by yet another blow. 24 hours EEG revealed 100 or so seizures, my seizure log had “two big ones a lots of jerks” in it, for the sake of efficiency, really. So here we are 12 moths into this insane rabbit hole. New meds, new combinations, surgery to install his GI tube, which gives us an option of not only prolonging his life with safe way of feeding him without damaging his lungs, but also allows us to try keto diet, if the drugs fail.
So until I can confidently care for his GI tube and have meds that stop majority if not all his seizures I’m not looking for myself. I’m knowingly avoiding myself, keeping busy, keeping the motion and notion of perceived progress. After all I know who I’m, for right now I’m a mom of disabled child, fighting, advocating, researching…
ktojoy 