hard to bear

My sister Caron has been my second pair of eyes and hands with Calvin this week while Michael is away. Last night she wrote to her husband:

thanks for the call tonight....

all was well until about 5:45 and then Calvin had a grand mal seizure. I was with him walking around the house and he just went limp and slumped to the floor which he does often when he is tired so I did not think much about it other than that I was going to lift him up and put him in his high chair for dinner. But christy saw that he was having a seizure....it was pretty awful. I knew it would be, but seeing it in person and knowing that Calvin was in pain afterwards was so so hard to bear.

Both of us cried later after we put him to bed (without his dinner). Anyway, it is a sad night and we are just sitting and talking. I don't know how she does it.  Calvin is just this innocent little kid going through pain and he has no idea why, no idea what is happening. it is so very sad.

Reading what she’d written to her husband was hard. I’m so deeply embedded in life with my disabled, retarded, non-verbal, developmentally delayed, seizure-racked, drugged-up child that often I don’t see clearly how difficult it all is. It is not until I step back from the situation—often from reading or hearing what someone else has to say about it—that I can gain complete perspective of how miserably hard and sorrowful it truly is, especially for Calvin.

And so the story goes, Calvin takes more and more medication but continues to have these hideously elusive seizures no matter what we do. The longer he has seizures—and the more medicines that fail—the more likely it is that he’ll suffer from them for the rest of his life along with the drugs’ debilitating side effects. It’s the life of a child difficult to imagine but even harder to bear. Our only hope out of this living hell that is epilepsy is a cure.

Please share Calvin’s story and help bring us one step closer to a cure for epilepsy.
Give to cure epilepsy: http://www.calvinsstory.com

photo by Michael Kolster

1 comment:

  1. oh, sweet Calvin. So many days. Our love to you all.KIM