May 20, 2010

One Is Wheezing. One Is Seizing. One "Just Wants To Be Free."

This week I'd rather be blueberry picking in Alabama!
It has been a rough week but then most are in this household. I was reading one of my favorite bloggers, Big Mama Hollers who is an adoptive mom of 39 children. Today she laments, "Does everything I touch have to be so difficult? Is it me?" I understand her completely. This week is a perfect example. Since Christmas the teenager has developed a seizure disorder heralded in by a terrible tonic-clonic seizure on December 28th that left her unconscious with a concussion she sustained when she fell backwards at the onset of the seizure hitting her head on an antique steamer trunk. Since she had no known seizure disorder, the seizure lasted well over 5 minutes, and she was totally unresponsive the paramedics took her to the local children's hospital. We were informed that the possibility of her having another seizure was about 50/50 based on her test results but that pediatric neurology had changed somewhat over the years and they generally did not treat with medication for one seizure and/or one abnormal EEG. To say our lives changed a bit after the 28th is an understatement. I am not paranoid, especially about seizures, and am able to maintain my cool as a parent when confronted with one but hyper-vigilant after the 28th? Duh! Safety suddenly become an all consuming pastime. The teenager, for instance, loves to swim and we have a small above ground pool. What if....I now put the telephone in a zip lock baggie at pool side with a flotation device at arms length. If she began seizuring while swimming there would be no way to lift her out so I have to have the ability to hold her above water and access to phone 911 if the seizure did not subside. In our family, stopping an activity like swimming because of "what if's" is not an option. Normalcy is pursued at every crossroad even if it is inconvenient or sometimes scary. I guess it was only a matter of time before the inevitable happened though. On Tuesday night, while everyone was sleeping I heard a strange noise from the teenagers room upstairs and went to check on her. In times past I would have ignored it thinking she was dreaming but since the 28th many things have changed. I found her in the midst of another grand mal seizure. Pupils fixed and constricted. Completely unresponsive. Pulse and respiration were normal so I sat with her and waited it out. I hovered over her throughout the night and in the morning i was siting on her bed when she woke up. "WHAT'S THE MATTER?" she asks suspiciously. Oh, nothing I respond nonchalantly. Feeling ok are you? A trip back to neurology that afternoon and this time started on seizure medication that makes her giddy and loopy. Or I should say giddier and loopier. Mercifully, she doesn't remember any of the incident on Tuesday. She simply thinks she went to bed and woke up like every other morning. The good news is her MRI of the brain only showed the damage that I was already aware of and nothing more sinister that would cause the new onset seizures. Only another parent of a special needs child would truly understand when I say thank God it's only epilepsy. In the meantime the baby is still wheezing on 5 nebulizer treatments a day and the boy is not wanting to do homework. He tells me this morning "but mom I just want to be free." Free to roam. Free to explore. Free to play. None of which, in that dyslexic brain of his includes academics of any kind. I gave it my best effort with a nice "but freedom isn't ever free" speech knowing I was undoubtedly tuned out after the first two spoken words. All the while I'm yacking I'm thinking to my self, don't we all just want to be free? Don't we all?

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