Wednesday, September 9, 2009

Coming clean.

We are coming off of fourteen really rough days, which just ended this last weekend. Saturday, to be exact. As Kelsey said, it reminded us of the first few months of Owen's life, an uncomfortable, unpredictable, unwanted blur of sleeplessness, fear, crying, crying, crying.

We decided a few weeks ago, before leaving for vacation, that once we returned we were going to try to eliminate the last remaining seizures that Owen has, a "mere" 6-10 as he falls asleep for naps and at bedtime. Just to be clear, that's upwards of 30 seizures a day. This, of course, down from the 120+ a day that he was having before he began the ketogenic diet, a year ago last month. So, in conjunction with his neurologist, we decided to try Topamax, one of the few we've not yet plugged into his little system. The reason behind this renewed enthusiasm for pharmaceuticals - we are desperately trying to get a handle on his discomfort. Read "fussiness." Unpredictable fussiness. Every day.

I'm a firm believer in that one's perspective shapes one's reality. So typically, when people ask how things are going, my response is usually very positive. Great, good, very well... Because, well, they are. I have an amazing family. Two adorable boys who own my heart. A husband who is my soul mate. A business that is thriving and that reflects my values. But the last two weeks, I've been telling the other side of the story, because, well, I am exhausted. S o m e t i m e s i t i s r e a l l y , r e a l l y h a r d. I wonder if people are put-off or if they silently remind themselves to steer clear or, if they feel like one of my close friends did recently when I told her how difficult life with Owen can be. She felt relief. She admitted that she knew, suspected, and that she felt relieved that I had actually come clean.

Owen's irritability stems from his lack of sleep, his seizures and his GI issues. We can't seem to get a handle on any of these, try as we might. We've had well-meaning individuals suggest natural remedies for irritability, for seizures, for spasticity, for sleep, for his tummy. Just to set the record straight... THERE ARE NONE. At least none that are accessible to us right now. Owen has a seizure disorder and his brain is not like most other brains and he is on the keotgenic diet and we can't give him supplements, oils or herbal remedies. There is no tincture that will make his body stop jerking as he falls asleep. I don't mean to sound callous, but that's our reality.

So Topamax didn't work. Owen cried and cried and cried during the day and screamed at night. We carried him around like a wooden plank, his little arms and legs stiff and stretched out, his fists clenched, the spasticity taking complete control of his body. So we discontinued it on Saturday. A few hours later, he couldn't stop smiling.

I hope he knows that we are doing the best we can. The best we know how.