Today, after a three-year hiatus, I am heading back to my therapist. I first began seeing her just after Calvin turned two and had been diagnosed with epilepsy. His premature birth, the knowledge that his brain was missing a significant amount of its white matter, his infinite missed milestones, his relative blindness, his inability to walk and to speak had all been eclipsed—practically overnight—by his seizure disorder, by epilepsy.
Some people talk about acceptance, about how terrible things become bearable if one can simply resign themselves to the simple fact that things are what they are. But part of me doesn’t want to accept what life has thrown at me, doesn’t want to forget or sweep under the carpet or act like everything is fine and dandy and normal ... because it isn’t and it never will be. Instead, I feel the need to consciously not accept my son’s condition as static in order to fuel my search for a cure, to fuel my relentless advocacy, to fuel my hope because without hope what is there?
But this constant struggle—Calvin’s continued seizures, the endless administration of powerful chemicals into his little body that wash over his brain then seep out into his flaccid, uncoordinated limbs, his dizzy eyes, his manic mood, his lack of progress with skills as elementary as eating with a spoon—punches me in the face daily. The stuff brings me to my knees, sometimes suffocatingly so, and who can begin to know what it does to him?
So, these dark days lead me back to a place where a soft-spoken, middle-aged woman, who knows the weight I’ve carried as well as anyone can who hasn’t done it themselves, will sit across from me in a cozy chair and will validate my sorrows, validate my anger, validate my frustrations and in doing so perhaps lighten my load like she did before, if only just a little.
Please share.
Give to cure epilepsy: http://www.calvinscure.com
Some people talk about acceptance, about how terrible things become bearable if one can simply resign themselves to the simple fact that things are what they are. But part of me doesn’t want to accept what life has thrown at me, doesn’t want to forget or sweep under the carpet or act like everything is fine and dandy and normal ... because it isn’t and it never will be. Instead, I feel the need to consciously not accept my son’s condition as static in order to fuel my search for a cure, to fuel my relentless advocacy, to fuel my hope because without hope what is there?
But this constant struggle—Calvin’s continued seizures, the endless administration of powerful chemicals into his little body that wash over his brain then seep out into his flaccid, uncoordinated limbs, his dizzy eyes, his manic mood, his lack of progress with skills as elementary as eating with a spoon—punches me in the face daily. The stuff brings me to my knees, sometimes suffocatingly so, and who can begin to know what it does to him?
So, these dark days lead me back to a place where a soft-spoken, middle-aged woman, who knows the weight I’ve carried as well as anyone can who hasn’t done it themselves, will sit across from me in a cozy chair and will validate my sorrows, validate my anger, validate my frustrations and in doing so perhaps lighten my load like she did before, if only just a little.
Please share.
Give to cure epilepsy: http://www.calvinscure.com
 |
| photo by Michael Kolster |
You know, I have few regrets -- if any -- about the seventeen years I've cared for my severely disabled daughter, but I do wish that I'd gone to a therapist earlier than three months ago! It's helping so much -- not curing or changing the stress but certainly a safe place, a private place and a wonderful person to hold these trials for a bit. I applaud you in taking care of yourself and hope you find a bit of relief.
ReplyDeleteso glad it is helping so much! that is great. it is never too late. xo
ReplyDelete