Taking one for the team
The team I’m referring to is the team of parents who have kids with disabilities or illnesses that don’t get better with a dose of antibiotics…a team that I have been on for a while. At this point, I’m sure I must be captain of varsity and am looking forward to receiving my letter and varsity jacket at the banquet this year. The problem is, there never seems to be a banquet and no one gives out awards. It stinks, but I feel like I did my teammates a solid this past week.
Things with Max had been going very slowly last week and I was beginning to panic. We weren’t seeing anything that felt like movement in the right direction and the overall mood was dark and regretful. I could not stop crying and every person I saw tried to comfort me – other parents, random administrative staff, and of course, Hun. The end result was that Hun took over for the remaining part of the day while I got the heck away from this hospital and tried to relax. I went home for a day filled with imaginary zen activities, but ended up doing laundry and binge watching Homeland.
Apparently, my crying fit did not go unnoticed and someone reported me to the in-house psychologist who felt that I needed to be “seen.” While it was quite helpful and considerate to have a professional upon whom to unload my feelings – there was a sticking point that I have not been able to get out of my mind. Earlier that week we made a major stink about the amount of therapy Max was getting and pushed and pushed anyone who would listen to try to get more. We rather insisted that he get more. As a result, the psychologist felt we were too invested in the details and that part of my despair was due to trying to control the situation, not trusting the process enough, and lacking the patience required to see progress.
Therein lies the issue. As a parent of a child with a disability, there can be no such thing as too invested. We have no choice but to be concerned with the details and if we don’t control the situation, it will usually become a much more difficult situation. I tried to explain that without constant vigilance, advocacy and a bit of grit, Max would never have progressed beyond the immobility prescribed to him by every doctor. He would never have walked home from school, dove off a diving board, or walked downtown with his friends. If we weren’t constantly controlling, assessing, advocating, observing, and investigating he would probably be much less accommodated at school, the expectations for him would have been lacking, and several federal laws would have been violated. This is no one’s fault. It just is. You cannot ever give up.
I was told that advocacy is not always necessary and that professionals know what is best in this circumstance. Granted, they have seen many more children with SDR surgery than I have, but I gently argued that I know Max- and while there may be a protocol – he has never once in his life fit into anyone’s protocol and past circumstances I left to chance left me regretfully sorry. I agreed that perhaps I could gain some patience and trust the therapists a bit more, but there was no way I was going to stop advocating for more.
We got more therapy and Max is starting to make some good progress. Coincidence…I think NOT!