Midway through this afternoon I was already tired and grumpy. I was trying to cram about 2 days of work into a half-day because I needed to take Simon to KKI at 3; to be examined and casted for a new AFO (Ankle Foot Orthodic) brace since he has outgrown his current one. After this, we were to have an OT appointment. Needless to say, I did not finish my work and knew that I'd be playing catch up after the kids were in bed (no, I'm not caught up yet... working on it... sheesh.)
I finally stopped feeling sorry for myself about mid-way through Simon's casting. I think it is fair to say that this process is one of his least favorite, and I can't blame him. The kid never knows how long we're really going to leave that cast on (see earlier therapeutic activities for his justification). He is upset, freaked out, and overall majorly stressed-out by the whole affair.
I couldn't help but feel badly for him. To regret (yet again) all that he has to endure. My head knows it is all for very good reason, and as he cries and asks for help, and struggles to be good and stay still despite his apprehension, I repeat this mantra to myself for sanity's sake. But my heart still aches for him.
For such a little guy, he copes with so much. Today alone he managed a full day of school, including speech therapy and even physical therapy during recess. Then, I picked him up (he optimistically asked if we were going home, though he knows that it means an appointment when I pick him up from school) and took him downtown to Kennedy Kreiger. There, he was examined by PT and casted for a new brace. Directly following, he participated in a particularly tricky hour of OT. We came home, had dinner, and did a bit of his homework. Then time for a bath and bed. Tomorrow, back to school and therapy, and after school (you guessed it!) another session of private therapy. Speech, this time.
My tough guy is developmentally only three. It's hard for me to realize that and compare his "3-year-old experience" to what I provided his sister -- half days of utopian montessori preschool followed by plenty of mommy time, grandma time, and lots of fun outings and activities. Sure, education was important, but Livy's life was largely about being little, being loved, and having fun. It was a blast for both of us, and a sharp contrast to Simon's day-to-day.
Yet, Simon does have fun; he's a happy guy and a lot of effort is made to make learning and therapy playful for him. But his days are long, and he struggles to get through them. He often tells his aid and teacher that he misses mommy and wants to go home. And Simon is definitely loved, by just about everyone --- his family and friends, as well as his teachers and therapists. In turn, he loves everyone around him with a no-holds-barred-open-hearted affection. Everyone works hard to find the best way to help him, to work with him, to help him grow and develop. But, Simon works hardest of all -- today in OT I watched his entire body contort with effort as he struggled to pick up a jelly bean with his left hand. He is so tough, so resilient, so determined and persistent.
I know that Simon making great progress, and we all have so much hope for him to go further still. I know that we are doing what is best for him, but I also know that he is just my baby, and sometimes, I wish I could do just that -- simply let him be my baby. To be little, to have fun. To be free.
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