When Hillary was a baby I always asked the neurologist for a copy of the report he sent to the pediatrician. In the report following the initial diagnosis of Aicardi Syndrome the neurologist told the pediatrician that my husband and I handled his remarks well. I guess because we managed to maintain our composure and ask what must have been intelligent questions although I have no memory of that. I do remember the drive home down Route 10, tears falling like rain as I stared out the window knowing that the life we had planned with our two little girls would be vastly different than we imagined.
Now here we are over 22 years later and we’ve never lost the knack for appearing to be handling things well. The trouble is that others are fooled into believing that we don’t need help. Partly because most of the time I wouldn’t know what kind of help to ask for. How do you pick one thing out of the hundreds that you’d like help with, everything from basic house maintenance and cleaning to getting a break from the constant mental inventory of supplies and medications on hand? Prioritizing is not my strong suit; unless I’m in a situation where things must be done in a very short time. Somehow the stress of needing to get things done quickly causes me to focus and run on autopilot at the same time. It’s an odd thing, and the best example I can give is when I go grocery shopping after work knowing that I have only a short time to get in, get out, and get home. And I do it one two three! If I go on the weekend when I have no time constraints it takes much longer. I lose my focus, I start thinking about how there are so many choices for even the most basic items. Then I might start making up little stories in my head about what other people are shopping for according to the items in their cart. Maybe I’ll see something that reminds me of my childhood and take a stroll down memory lane while walking through the aisles. Focus for the task at hand vanishes when I have no reason to rush. There are many of us “special needs parents” in the world who just keep moving forward without much help. I have found that when I ask for help from case managers for the state their first response is to tell me how they have other clients who have much worse situations and don’t get as much help as I do. This makes me angry and feel like I don’t deserve help. If we follow that train of thought, how bad do things have to be before we deserve any help? My daughter, because she does not have a trach nor require oxygen doesn’t qualify for nursing care, yet home health care workers cannot administer her medications as only nurses can do that. She cannot walk, talk, roll over unassisted, feed herself, use the toilet, bathe herself or communicate her needs. She has daily seizures and is legally blind in one eye and visually impaired in the other. Yet when I ask for any additional services I am told that there are people in worse situations who get fewer services. Well that’s just sad! So, I just keep moving through this life with as much grace and dignity as possible.