As it happens every time my little man goes to an eval I see the side of him I tend to ignore. I find myself so amazed every day by his progress and his true valiant attempts at normalcy that I often don't realize how exceptional (and I mean that in all the ways it can be meant) he really is. Most especially though the evals always point out just how severely affected by Fragile X and its accompanying mental retardation and autistic behaviours he really is.
As if the eval by itself weren't enough of a reminder of what an incredibly difficult road lies ahead for my youngest child I was sitting in the waiting room of the orthotists office later in the afternoon and saw a magazine on the table regarding Autism. The article was "How Autism Ages" by Karl Taro Greenfield from this month's Time magazine. Just to torture myself further I decided to read it. I say torture because previous to my career as a nurse I had worked in group homes and residential facilities and am well-aware that Autism is not a "childhood"disorder. The article pointed out something that has been running through my mind both as a mother and as a medical professional for some time now. If 1 in 150 of today's children is autistic and the baby boomers are aging rapidly what does that mean to my generation? What does it mean for the parent's of Fragile X children who have aging parents who may or may not even have Fragile X Ataxia? How overburdened are we as caregivers going to be? How can we provide financially for this burden? How can we prepare ourselves emotionally or even physically to be so depended upon? What happens if we get sick? Who will be there if when we are outlived? These are the "don't think about it" questions that are taboo to mention even to other parents of special needs children.
I sit here contemplating this while ill with what may be a ruptured ovarian cyst or something worse as I skipped my biopsy last summer. I sit here with no time off should I need surgery. I sit here with no short-term disability insurance. I sit here with no other income producing parent to assist me. I sit here here with no life insurance. I sit here with no medical insurance because I changed jobs and my new insurance has yet to begin. I sit here scared clear out of my mind!
Am I making it out to be the worst case scenario?...of course. Sure its probably just an ovarian cyst, not ruptured, caused by Fragile X Premature Ovarian Syndrome that is just making me sick and screwing my hormones up entirely while making me a miserable neurotic mess. But in my head I have already doomed myself to ovarian cancer. In my head I am thinking how the hell long would I have to be out of work if I needed chemo. In my head I have doomed myself for skipping last years biopsy because I didn't want to suffer through any more pain or time out of work. In my head I see my son shipped off to his schizophrenic father shortly after my funeral because his siblings are not yet old enough to care for themselves never mind a mentally challenged younger brother. I have imagined my fiance devastated, homeless, wanting to keep the children (who in every other way but genetically belong entirely to him) but having them taken from him because I did not provide better financially or legally.
Reading this article just threw me into a "what's the worst that could happen" tail spin. Because all it would take to pull the rug out from under my family entirely is for me to get ill for more than three days. That's the reality. That's the "fragile" state of affairs. That is the tight-rope walk I perform day in and day out. Don't fall, walk a straight line, don't look back, don't look down, keep your eyes ahead, focus on getting to the other side....without falling.