This post is one where I ask for help from anyone out there who has been dealing with medical issues with a child longer than I have. When do you stop trying to figure out what’s wrong with your child and just accept the fact that this is the way things are?
I haven’t gotten past investigation mode with Max even though it’s been over four years since he was diagnosed with Epilepsy. His neurologist keeps reminding me that everything that is “wrong” with him is a symptom of Epilepsy but I still haven’t accepted that. Because his seizures are well controlled its hard to think that everything else is still present because of it. I am constantly trying to figure out what more is lying under that diagnosis. Is he Autistic? Does he have some kind of oral sensory issue? Does he have sleep apnea which may or may not cause his ADHD symptoms? Is he on the right medication and if so is the dosage correct?
I’m constantly questioning whether his behavior at any given time is a side effect of his medications or if he’s just tired or hungry. At a trip to the science museum this weekend I actually started crying at lunch because I was so overwhelmed with trying to figure out why he was so lethargic. I know he gets overstimulated at places like that and kind of just shuts down but couldn’t let myself just accept that. I kept asking him if he was ok. Was he hot? Was he tired? Was he hungry? Did he have to go to the bathroom? Was the new dosage of medication too much for him?
When he was first diagnosed, I went into warrior mode. I read. I asked millions of questions. I quit my job and did therapy exercises with him every day. Then I got angry. I was mad at him, at myself and at our situation. I was mad at my husband for going to work everyday. And now? Now I am just sad. I’m sad for me, for our situation. But mostly I’m sad for Max. I’m sad that he doesn’t enjoy museums like his brother does and that he can’t ride a bike. I’m sad that he gets exasperated and says “I ok mommy!” after the millionth time I’ve asked if he’s ok. I’m terrified that there is something wrong with him that I’m missing but that I might be able to fix. I’m just plain sad.
I just want to let him be. I just want to have it sink in that this is just the way things are for us and that it is ok. I want to know that we are doing everything we can for him and stop wondering if I should be pushing for another medical test or therapy. I just want to enjoy him without making him feel different or sickly. I just want to feel peace.
So please, if you’ve been through something like this, how did you do it? How did you make peace?