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Trials of an Sn Mom: Egg Shells

So we are on week 5 of summer break. We are still trying to figure out this seizure thing. Some days are ok (a couple of slight seizures), some are great (no seizures), some are defeating (a nurse's log page filled with seizures). Epilepsy is a stubborn ailment. Despite that, our boy is actually enjoying the summer. We worked through the state and insurance systems so our guy has the 1:1 medical support needed at this point in time. A tree may have lost its life over the paperwork involved with that...but we came out of the process successful. Weeks before and after Extended School Year (ESY) have been planned and executed. Vacations have been mapped out. Things are logistically ok, but I feel like I should be preparing for something. I am constantly questioning - did I forget anything? To be honest, things are moving a bit too smoothly for my comfort. And then I think...do I even know how to relax anymore? I think. I ponder. And I resolve that the answer is a resounding...no. I have no idea how not to plan or how not to worry. I am in perpetual "future mode", hoping to foresee and tackle new issues. In many ways I have forgotten to just be...most especially to just be in the moment. And that is sad.


My husband suffers from the same syndrome. Our daughter was in a tennis tournament this week and had her first match. Due to logistics, Daniel had to be there. In the past this would not have even been considered, but my father was going to be there and we felt confident that the 2:1 ratio would suffice. I got home from work, started dinner and my husband almost could not contain himself. "He was SO good." The "he" would be Daniel and the capitalization of "so" does not quite capture the enthusiasm that was oozing from my husband. He continued with - "he sat quiet the ENTIRE time. Well, up until the end when he started mimicking the grunting sounds from the players at the neighboring court, but he was SO good". Now, this should be the expectation from any parent - SN or not. But, for us, we carry battle wounds from prior experiences, and we naturally assume the worst. It's just how we have been trained these last ten years. To have an experience be so pleasant, uneventful and relaxing is still really new for us and represents what most of our summer has been like up to this point. Turns out this good behavior has also made our boy more happy. The bad behavior was the result of his frustration, unable to articulate, seizures, inability to regulate, etc., which makes sense. He keeps telling us he has happy feelings because his feelings are happy...meaning he likes being this way. As a result he is far more chatty, he engages in more self play and is motivated to do more. I actually found him cuddled up with a book trying to read the other evening.



So, I am trying to remind myself to be in the moment. To enjoy the absence of the behavior wall that has been stubbornly in place for years. I hope this is an opening for our boy to advance in other areas like reading and auditory processing. As he gets older we do notice just how much work is needed. Much of it was hiding behind the bad behaviors or, more recently, the seizures. But for now...mom and dad have happy feelings as well. We love these new opportunities for conversations and interaction and the laughter that has ensued. I am hoping it will last for a while but realize that it may not. So, I will put other concerns on the back burner for now. And with that, I suppose that our son has again shown me a lesson...to know, appreciate and enjoy the moment because it can change in a nano second.


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