For so long the guilt I felt was an enormous burden that no one could seem to understand. Sometimes I would give it voice, only to have it quickly silenced with words of encouragement and sayings that made sense in the reality of looking at things from a far away place. But always in my head, they lingered, my thought’s whispers that what happened to J was my fault.
For it was my body that did this to him. My body that, by all accounts, got confused when the beauty of pregnancy began. In my body’s chaos to figure out a new routine of maintaining life for two, released clots that blocked J’s source of life; leaving him to stroke. A helpless, yet to be born child, clinging for sustenance from a single source, to be cut off just long enough to cause damage. Brain damage. An intra-uterine stroke.
No… no one could understand the ultimate guilt I felt. For nine, long years. With this inner torture (actually for more than nine years), I carried this guilt within my soul. Until it was found to have been wrong. A misdiagnosis of etiology for much of J’s brain damage… it was not an intra-uterine stroke caused by my body’s inability to figure out it’s role; it just was. It just is. J’s brain malformed because it malformed. The true essence of Special Happens….
The guilt reluctantly subsided until recently wherein a new guilt formed. This new guilt is the guilt from a tired parent. The parent forever in the quest of a solid nights sleep; never to be obtained. For 10 years now. The parent who, if allowed to find sleep at all, is awoken in the middle of the night with perseverations lovingly being whispered in my ear. The same perseverations that are visited upon me most every moment of our together times during the day. For me, it doesn’t find an end. There is no break from perseverations that plague his mind… for either of us.
The behavioral “phases” that last much longer than a typical child’s phasing through life; that find their way from phase to compulsivity. We’re in the constant tease, can’t listen, can’t focus or be present in the “now” phase, perpetually slap-happy. A phase that’s hard to manage with a tall child that would run blindly and without a care, who can’t see his path from one side, that has no awareness of safety, societal appropriateness, etc. At least he’s happy.
Except, it can be tiring. It can be difficult to manage this while trying to make a meal or make a family outing. It becomes prominent in every facet of our lives, driving every facet of our lives… never ending; a constancy only understood by other parents of children with significant special needs.
It makes an already tired parent tired. It becomes that glass of water, neither half empty nor half full, but rather heavy for its constant holding (as so eloquently described by Stuart Duncan here).
And so, comes another guilt. A guilt that tells me how much we have to be thankful for. A guilt that makes me ashamed to even write this post…. that makes me feel as though I should never be tired of navigating any of our family’s needs.
And yet… I am. Very tired.
And feeling guilty. Very guilty.
Ist Photo: © Special Happens
2nd Photo: FotoGraf-Zahl via Flickr