Recently I began the process of writing a 504 plan for Theo's diabetes care at school.
Section 504 of the Rehabilitation Act of 1973 provides protection against discrimination for children with disabilities, including those with diabetes. I'm writing a comprehensive plan of care to be followed by school staff in order to keep the disease managed with as little disruption to Theo's day as possible.
My preparations include reading a brochure called "Your School and Your Rights," written by the American Diabetes Association, where I found these words:
To qualify for protection under Section 504, a child must have a physical and mental impairment that substantially limits one or more major life activities... In making this determination, a person with diabetes is viewed as he or she would be without the help of mitigating measures such as insulin.
Without the help of mitigating measures such as insulin. It hit me: Theo can do anything, go anywhere, be anybody, but...he can't do it without carrying medication. Something will always hold him back.
The tears came again. I've told you about the tears. I called it grief, this working through the early stages of a diagnosis for my youngest son. When I use this term, people nod their heads in agreement. Yes, you're grieving the loss of your hopes and dreams. Yes, you're in early mourning for the forecast of future complications. Yes, they nod.
But I'm not entirely convinced of this.
Certainly, these tears are for Theo. I grieve for Theo. And for Greg and me, who have mountains of paperwork and prescriptions to manage. And Simon, who is asked to curb his eating because his brother can't have seconds.
But these things are not always on my mind. So the tears...the tears are also for something more, I've come to see.
They're grateful tears for love in a time of loss.
When I tell people about moments like reading the ADA brochure, they weep with me. They ask me to tell them what they can do. Sure, some people don't know what to say. Some shrug it off like it's no big deal, and that can be refreshing at times, and annoying at others. Then there's the kid in Theo's class who announced, "I know why they call it DIE-abetes."
But most people are kind. They try to reach out, best they can. And it's this care, this nurture from friends, doctors, social workers and strangers, that can bring on the tears. And a weeping for something more: for what should be, and should always be, mitigating factors aside. In one of my first blog posts here, I wrote that I wish everybody, always, would show others such care.
This past weekend, my family and I were at a friend's 40th birthday party. People of all ages wandered around talking and eating until a loud crash brought all to the main floor. A heavy three-paneled folding wooden door had fallen flat. It had fallen just inches from a toddling baby.
We're always somewhere between love and loss. We must recognize this and speak and weep accordingly.
a poetic way to say all this