I have to apologize for such a long drought in my writing. It’s not that I haven’t tried to write but that I haven’t been able to form a focused, complete piece. Partly, it was a summer with a house full of children but it’s also about the fullness of my own head. I’ve spent a lot of time worried and angry and, since I am not as funny as Lewis Black, the pieces weren’t worthy of saving. In all honesty, today’s post isn’t the encouraging, useful post I want it to be either. It is, however, what I need to put out there.
This morning was “Walk Your Kid To School Day” at the boys’ school. I love this event. They have prizes for the kids who participate and the staff cheers for them as they enter the door. Parents are greeted with bottles of water and smiles as they drop off their kids. Everyone gets some exercise and it is truly a great thing. A couple of years ago, with Isaac in his wheelchair, our whole gaggle of four made the trek. This year, his first year of kindergarten, he wouldn’t have needed the chair. A walk to school is a little thing; but not so little in my heart.
However, today we couldn’t walk to school. It was 49 degrees. Now that Mylie has so much trouble maintaining her body temperature and with her increasing issues with fatigue and pain, there is no way she could have done the walk. I may have still parked a little ways away and done a briefer walk, except she is also battling strep and, for the Princess, it is an actual battle requiring all of her strength just to battle the bugs and extra medication to battle what the antibiotics do to her.
Conner was disappointed. My heart was hurting as I drove past smiling families walking their healthy children to school. However, when I finally made our way to place I turn in to drop off the boys, there were cones blocking the drive. I made eye contact with the teacher and crossing guard who were standing in front of them expecting the cones to be moved; they know us. Instead, I was met with an uncomfortable look from the crossing guard and a self-satisfied smirk from the PE teacher. I suspect that he was thinking that even my child with disabilities would benefit from walking in from the street-it’s not that long of a walk. He was right, he would have. Unfortunately, it could compromise the health of my other child.
So, the mother who was already grieving flipped over into anger mode. I pulled my van into a space on the street, got the boys out, and locked my girls inside-ON THE STREET! I do NOT leave my children in parked cars but, at this moment, I had no choice. I walked the boys to the school and even snapped my disapproval at Isaac’s wonderful Kindergarten teacher.
By the time I got back to the car and headed home, I was in tears. I quickly shot a politely worded email to the assistant principal explaining my concern and asking him to consider an alternative traffic route or drop off plan next year. Then, I had to write an apology email to Isaac’s teacher. It seems like a little thing but, as I tried to explain, my mama heart poured out more words than I planned to say. The gist of the message was this:
I was angry that everyone around us was taking for granted that a walk to school is a simple thing to ask. I was angry that a mother in a clearly marked handicapped van was met with a goofy grin rather than accommodation. I was angry that I had to choose to leave my child in a parked vehicle on a public street or risk letting her infection attack her if her body temperature dropped and further weakened her immune system. Mostly, I am furious at the nameless disorder that is stealing my little girl’s childhood and that I don’t know how much more it will take. I am angry that we couldn’t take that stupid walk that we could take just two years ago but I am not, in any way, angry with you.
When you are the parent of KWSNs, you learn to love the little things. You learn to celebrate tiny successes. You learn that things like sleep and showers and coffee are little things that become like gifts to the soul. You also learn that you can handle the big things. The seizures, the surgeries, the endless appointments, the diagnoses, the fear, the research. You can survive all of those and keep on going even when you’d rather crawl in your bed and hide under the covers. Still, sometimes it’s the little things that slip in while you’re not looking and level you. They remind you of what you’re losing (or never had) while others go merrily along their way. They can be the things that break your levee and leave you in full-out ugly cry on the back porch.
Yeah, today I learned a walk to school is just a little thing; but not so little in my heart.
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