Wednesday, August 7, 2013

The policy of being Human

I am optimistically pessimistic. It really is disappointing that when people behave badly, it rarely surprises me- but when they are kind and considerate- it generally catches me off guard. People tell me all the time, they have no idea how I do it. I translate that into- not a compliment of reverence and respect for the chaos that is my life but rather an exhaled commentary of relief that they can't fathom some of the stuff I put up with.

We dove into this school year, not really having any medical policies in place for Phillip or Lily. I wasn't concerned so much about Lily because she is at a school that is familiar, the health aide knows her all too well and they know us as a family. Phillip is now at high school- which is a huge campus with lots of different kids and teachers and they neither know him or of his diabetes. It may be reckless, but I'm kind of letting him revel in the anonymity. I'm giving squirt the room to fly solo and see what he does. After all- last year I had all the paperwork in by July and thought a plan was in place and emailed every one of his teachers(heard back from 1), placed multiple emergency boxes in various classrooms around the school and found out in December that they were going over his "plan" in January. I think experience in the system has given me a better picture of what my expectations are and in what way I need to invest my time to keep my kids safe. One option is following them around to every class- another option is teaching them to manage their conditions independently.

I don't know if you've ever met someone whose identity becomes encapsulated in their condition. They let themselves be defined by it. At times it is absolutely unavoidable as many conditions tend to take over a person's quality of life.  As a person who spends a lot of time reflecting on Li Fraumeni Syndrome and cancer- I am always cautious about letting it rule my existence more than it needs to. It is an inseparable part of us- so we can't disavow it without amputating that part- and unfortunately many of us have amputated bits and pieces trying to distance ourselves as much as possible from the beast. But it is a choice- how much it is allowed into every day life. That shapes how I interact with people because I know how much their view of what we've been through changes how they treat us. I know first hand that many people with the worst scars- have learned to hide them so well- you will only see them when they want you to.  I actually have come to appreciate the look of shock when people find out my history- it means I am a better actress than I think and manage to play the harried normal mom role pretty well. Every now and again I get to be the person surprised- and I also appreciate the hell out of it- because I know the effort it takes to put pain aside and keep going and I respect when I get a glimpse of someone else who has done it for years.

Lily's Counselor was on extended leave last year. Since counselors at schools wear many hats, her absence did concern me since she is the go between for our emergency plans and all the technical paperwork ensuring Lily has a safe learning environment despite her condition. I was dreading having to waste another hour of my time going over a technical document.  Last year we also gained a new principle- which left a hole in my emergency plan- as the former principle promised me that if Lily ever needed the injection- she personally would see to it. A complete 180' from our horrific experience at Keoneula Elementary. So this year, the other counselor called to schedule a meeting so he could become familiar with Lily's case. He knew Kiera and was extremely apologetic that he had no idea of Lily's condition or needs before now. I didn't expect him to and I was full aware that our counselor was out- I knew I could go to him if needed- but I also knew he was filling the role of 2 counselors- there are many kids with a variety of needs- I triaged Lily. He also let me know that the vice Principle was no longer at the school and Lily had a teacher who was new to the school. So far this year we are 1 for 5- thankfully the health aide is still here and amazing! 

I did what I do every year. I opened up the adrenal insufficiency file on my computer and printed out the multiple documents I've saved over the years that explain adrenal insufficiency, it's symptoms and treatment. I print it out every year and give it to Lily's teacher along with an emergency management page with her photo- our numbers, the doctor's numbers and when to call us or 911. I make extra copies for all the new folks who will be in the meeting. My view these days is that my job is just to make them aware of her condition- they will be the ones who will be my greatest assets if she gets sick or injured. I do not expect anyone in the educational field to provide my child medical care-their job is to educate- if they wanted to be in the medical field they wouldn't be at school. I do expect that they let me know if something seems off.  Her teacher called me the first day and we had a lengthy chat about everything. She is a wonderful, compassionate person and assured me that she would do everything in her power to make sure Lily was safe at school. That's really all I ever wanted. I know there are no guarantees- kids get sick, kids get hurt. As her mom, all I want is to be heard and feel comfortable that someone has it on their radar that Lily has a special medical need in an emergency.

The meeting went how I expected my very first meeting to go. The differences were many from how that first awful meeting went. I walked into it with the expectation that this was an opportunity for me to create awareness while filling out documents that were a formality - they were so someone up the chain could check off boxes that say I am comfortable with the plan. The policy itself will not provide me that room for comfort, but I am not one to split hairs unless provoked. I also have learned that reasonable people are guided by something greater than policy- which is what Lily's case needs. A rare condition such as adrenal insufficiency- should not be a subsection in any school health policy- it doesn't affect enough kids. Policy does however need to provide space for case by case accomodations with such rare conditions as adrenal insufficiency-in the past it has not done this.

Yet this meeting was different because everyone knew Lily and obviously cared about her welfare. That alone means more to me than a policy demanding someone give her a shot in an emergency. To me- when you care about something or someone- your actions whether perfect or flawed are much more pure than if you are person acting only because bound by policy. It is the basis of human nature and it can be evil and ugly or pure and magical. I will rest better at night knowing that Lily is in a safe environment. Safety is not guaranteed- it may be a bumpy ride- but I know that those around her are caring, decent people and that means more to me than a document.

As we talked, mostly off record - Lily's counselor mentioned he also had high frequency hearing loss and had cancer as a child. I noticed years ago that he had hearing aids- but I had no idea why. He told me that his hearing loss was due to radiation treatments which then I had to ask where his cancer had been. He had a grade 3 astrocytoma when he was 13. Now it was my turn to be shocked. In a school that we have been in for years- I've seen and passed this man more times than I can count. We say hi casually- but in this moment we are connected again by a horrible disease. This is the moment that is hard-do I mention that both my brother and dad had the same horrible brain tumor- yet somehow the look of shock must have been on my face. So I tell him, he says gently that he wasn't supposed to live past 6 months either. We are connected because the little girl we are here talking about was given a poor prognosis- and before me is a survivor - another sign, another reminder that the human body and spirit are amazing and the possibilities are endless. Sometimes the reminders are right there in front of you if you only take pause to see them. The reminders are human, the connections are real and without them there is nothing left but meaningless documents. So I for one was very grateful that my time was not wasted on checking a box or creating policy, but in getting to know another person who shares this crazy journey and can knowingly travel it beside my daughter. I am hopeful.

1 comment:

  1. What an amazing encouragement in the unlikeliest of places! I am so glad that your kids are in a school where you feel the adults have their best interest at heart.


Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)