It’s hard to know where to begin or if there was something I could have done differently. I keep going back over the last few months, the last year, the last two years really and beyond that and wonder if there was something I did that brought us to where we are today.
We knew this summer that things were different with The Fifth Element. We chalked it up to the “terrible twos”, the new summer schedule, all sorts of things until somewhere in the middle I began to think it was something else. The tantrums, the hesitancy to play with kids she saw daily, the whispering of “no, no, no” until it became screams and frantic pleas to be held so close it felt like she wanted to meld into me completely. The sheer anxiety and desire to be held almost always was more than I could bear. I started watching her behavior more closely, seeing the language delay and all the while wondering if I was being paranoid. But I wasn’t, H saw it too.
By the time we hit her second birthday, dealt with summer road trips that left us exhausted by the hours of screaming in the car, her need to physically shut things out by playing possum or covering her eyes when she saw the ocean for the first time, the need to shut doors, windows, buttons, drawers, it was clear we were dealing with something we hadn’t with the other two girls before.
Tuesday we went for our first round of evaluations for sensory disorder. There seems to be some sensitivity with her hearing too. There is anxiety that is palpable and speech delay. All of it crushes both H and me. I want to fix things for her so badly, to make life easier. At the same time I feel all sorts of frustration because we don’t officially know what is wrong, how to help or how to deal with the guilt I know that I feel over this happening to her. My guilt is tripled, quadrupled over my impatience and exhaustion when whatever this is that we are dealing with keeps us from doing things like easily going to the store, on family trips or just putting on shoes and changing diapers.
I know I need patience for a diagnosis, for her and to figure out how to deal with this all on a short as well as long-term basis but right now I just want to stop feeling like H and I are all alone in this journey. I want to stop feeling like every day is so hard and that I have no idea what I am doing.
Despite it all she still loved Disney World.