I seriously dislike filing. My “to-be-filed” folder had become my “to-be-filed” box and when that started to overflow, I just couldn’t put it off any longer. Since my file drawers were also basically overflowing, the time had come to weed out all the unnecessary stuff taking up all the room.
Since most of my files seem to be about Lauren’s education, social services, and medical needs, this onerous job became quite a trip down memory lane. Drawer number one held memories of preparing for IEP meetings armed with copies of education law and regulations. It held copies of letters to administrators too blinded by bottom lines and old habits to see the child that didn’t need even more challenges on her way to adulthood, and reports from “experts” that thought they knew my child after spending twenty minutes with her.
Drawer number two was my advocacy drawer. The drawer that helped me prepare for all the potholes and skirmishes that would befall us. It held all the articles, regulations, and printed material I could get my hands on in order to enter into each battle with enough ammunition and armor to win. Most of the material was now dated and of no help to anyone. So now instead of info on Positive Student Profiles, transition rules, and curriculum, this drawer will hold info on housing, accessibility, and trusts and estate planning.
Drawer number three is the dreaded medical insurance and expense drawer. Besides the endless Explanation of Benefits forms, there were the remains of successful and futile efforts to try and meet Lauren’s medical needs. The equipment denials which took months to sort out and the requests for reports, recommendations, and guidance to weather each new crisis, bring back memories of scary, frustrating days. More recent files contain paperwork demanding a switch to generic meds rather than name brand. They want me to prove that my child’s seizures do not respond as well to generics as name brands. They want to risk the tenuous control that we currently have over these evil occurrences that take over Lauren’s body and render her exhausted. Looking back at pictures of Lauren when she was five or six years old, there is a light in her eyes, a connection with the world, that hundred of seizures over the last 24 years has dimmed. And, a pharmacy manager in some big company doesn’t care what her doctor prescribed...he’s willing to cause that light to dim even more.
And then there’s drawer number four. That’s the drawer that holds the files that tell the story of our lives together – George and mine. Mortgage papers, investment info, and other legal detritus take up less room than you would think twenty-eight years of togetherness would need. Way at the end of the drawer are the “dream” files. They are the files holding articles, brochures, and maps of destinations we hope to some day visit and explore. Up until recently, information only went into those files, rarely came out. Since Lauren has been self-directing and when caregiver positions are stable, we have been able to revisit our honeymoon destination, travel to friends we have been promising to visit for about 15 years, and getaway for a couple days here and there to explore places that were out of our reach before. Lauren has been safe and well-cared for, and we have been able to realize some dreams, before we are too old or infirm to enjoy them.
So, now my hanging files can actually slide back and forth in the drawers. Now, there is room to fill them up again with the remains of new battles, new successes, and preparatory data for the new challenges that we will face in the years ahead. But best of all, at the end of the bottom drawer, there is room for new dreams.