Reading another mother's recent Facebook comment made me think of a morning from this past summer. Like most mornings I heard Calvin wake up around 5:00 and romp around in his crib. I tried to roll over and get a little more sleep since I am up half a dozen times or more each night looking in on him; checking to see if he is having a seizure, checking to see if he is breathing or, when he is awake and standing in the crib, laying him back down and covering him. When I finally did wake up I went in to find Calvin completely covered in shit. At some point that morning his diaper had come off and for an hour or more he had been rolling around in it. I called for Michael to help me clean up. Poop was everywhere; it was in Calvin's hair, on is feet and hands, under his fingernails, on his face, legs, arms and spotting his sheet, pillow and comforter. And there he was just sitting sucking his thumb and poking his eye, completely oblivious.
Though I tried to find the humor in the situation, I found myself disturbed—not mad—just feeling despondent
over the big picture, as was Michael. Calvin, who is now six, will be wearing diapers for
the foreseeable future and likely into adulthood, if he makes it that far. So, we have a lot of years ahead of us dealing with shit.
The Facebook mother's comment, it seemed, portrayed the amusement and hilarity of her child's endearing behavior in taking off a soiled diaper, throwing the crap all around then falling asleep in it. Kids do the darndest things, don't they? Sure.
Christy-my heart breaks for the pain in your voice (post). You are so obviously an amazing mother, but faced with so much more than I can imagine handling, and handling it with such grace. Moms who have it "easy" just don't know any better, like me. This is a good blog, a good thing you're doing. I hope it also helps you.ReplyDelete
Wow, I can so relate to your feelings and sentiment. With exception our Journey with this just started and he is 6'4 and 18. His are so bad and already looses bladder and bowel. Of course he has no clue during or immediately after what it is. It is just heart breaking. Sometimes I make it to him, sometimes not. Most often I just don't sleep as I am afraid he won't wake up. He stops breathing in his. Not to mention he is not taking this flip of his life well. He was mapped out to head off to college in the fall. Honors student, gifted engineered mine. Now with every seizure and or every increase of med, my son I have known for 18 years leaves me. Senior year, Honors student when we began in August, 3.7 GPA, now 3 months later, Special services and we are trying to figure out how to graduate him and he just wants to die. I don't understand where this came from and more so--where the hell the cure is!! THis is a nightmare and I am ashamed to have not known there were families living train wrecks like this. People completely do not understand. And if 1 more person says don't worry, God will handle I am going to scream!! They mean well but unless you are living this--you really don't get it!! Hats off, may you find peace somewhere in the day each day without worry!ReplyDelete
dear amie, i am sorry you and your wonderful son have to deal with this. try to hang tough. tell him to do it too. if i can help in any way ... with meds or other things (i have learned a lot) please let me know. you can email me at email@example.com you can also friend me on facebook if you are on it. i will hold you and your son in my thoughts and i will listen. xoxo, christyReplyDelete