Every once in a while I have a day where I think about those parents, some whom I’ve known personally, who have had to resort to putting their disabled children into institutions and homes—hospitals, nursing homes, group homes—because the kids were simply too much to handle. Today was one of those days.
As Calvin grows he gets stronger and exhibits his will, which is generally a good thing. The biggest down side of this kind of development, though, continues to be the frigging anticonvusant medications (three of them) that he must take in an effort to control his seizures, albeit unsuccessfully thus far. They make him aggressive (though not malicious) and hyperactive beyond belief—both things that I have a hard time dealing with physically and emotionally. To add insult to injury is the fact that the drugs also cause his balance to be ridiculously awful rendering me his constant crutch, his human safety net.
Lately, when I put Calvin on the changing table he emits such high-pitched shrieks that they pierce my ears as he spasmodically flaps and writhes, straightens and kicks. All the while I attempt to change his diaper and try to keep him from dunking his flailing hands into his shit. I imagine at some point I’m going to need a straight jacket (perhaps one for each of us) because, with each passing year of near stagnant development, it’s looking more and more likely that Calvin will never be potty trained. But I remain skeptically hopeful, which is not quite the same as cautiously optimistic.
So, I found myself in tears again today, the result of being up to my eyeballs drowning in our pathetic situation. I tell you, it feels to me that there’s nothing in the world sadder than having a beautiful, beloved, sweet, loving and affectionate child who has a horrific, chronic, nearly hopeless medical condition, like epilepsy, where the treatments—the drugs—seem as bad as the symptoms that they attempt to mask.
Please share Calvin's story. Help bring us one step closer to a cure for epilepsy. It's our only hope.
Give to cure epilepsy: http://www.calvinscure.com
As Calvin grows he gets stronger and exhibits his will, which is generally a good thing. The biggest down side of this kind of development, though, continues to be the frigging anticonvusant medications (three of them) that he must take in an effort to control his seizures, albeit unsuccessfully thus far. They make him aggressive (though not malicious) and hyperactive beyond belief—both things that I have a hard time dealing with physically and emotionally. To add insult to injury is the fact that the drugs also cause his balance to be ridiculously awful rendering me his constant crutch, his human safety net.
Lately, when I put Calvin on the changing table he emits such high-pitched shrieks that they pierce my ears as he spasmodically flaps and writhes, straightens and kicks. All the while I attempt to change his diaper and try to keep him from dunking his flailing hands into his shit. I imagine at some point I’m going to need a straight jacket (perhaps one for each of us) because, with each passing year of near stagnant development, it’s looking more and more likely that Calvin will never be potty trained. But I remain skeptically hopeful, which is not quite the same as cautiously optimistic.
So, I found myself in tears again today, the result of being up to my eyeballs drowning in our pathetic situation. I tell you, it feels to me that there’s nothing in the world sadder than having a beautiful, beloved, sweet, loving and affectionate child who has a horrific, chronic, nearly hopeless medical condition, like epilepsy, where the treatments—the drugs—seem as bad as the symptoms that they attempt to mask.
Please share Calvin's story. Help bring us one step closer to a cure for epilepsy. It's our only hope.
Give to cure epilepsy: http://www.calvinscure.com
Dear Christy,
ReplyDeleteit's really sad and I can feel your heart breaking.
Can't say much on the practical side but hope a way to adjust to age changes will come.
ciao
Federica