Mystery Lane

Mystery Lane

Saturday, October 9, 2010

The No Good, Very Bad Days

Sometimes I have bad days.  This happens to everyone.  When it happens, it feels like you are the only one in the world having a bad day.  Everyone around you seems like they are happy and having a good day.  And it kind of pisses you off and makes your bad day even worse.  The worst part is that maybe your day started off great and you thought “I am going to have a good day!”  Then it turns into a bad day for whatever reason.  Today is my bad day.  It did start out great – Jackson slept in until 10:30 a.m. (which he never does), we got ready, went for a walk, saw deer and horses and cats, then had some lunch, Jackson went down for a nap and BAM here came my bad day.  What happened?  I sat down at the computer and started doing research on Jackson’s condition.  We have a doctor appointment over in Seattle at the end of this month with a doctor who is the leading expert on Jackson’s condition.  People fly from all over the world to see this guy.  I’m trying to learn as much as I can about the brain, seizures and PMG (polymicrogyria) so I can ask him some questions that will help me better understand the mystery of Jackson.  For the last week or so, every time Jackson goes down for a nap I hit the computer, read medical studies or go back through some of the books I have read and take notes.  I have the librarian at Sacred Heart Medical Center looking for articles for me.  Jackson’s neurologist has given me some articles.  I’ve even ordered another book on epilepsy because someone recommended it.  I’m sick of it and overwhelmed by it.  I’m tired of words like cortical lamination, schizencephalic clefts, intractable epilepsy, spastic hemiparesis, and parasagittal parieto-occipital.  I’m a teacher for crying out loud, not a freaking doctor!  I just want to know if my baby is going to have a good quality of life someday.  I just want to know if someday I will hear him say “mommy”.  God I want to hear that so bad.  I just want to know if someday Jackson won’t have to go through a day suffering a seizure.  I just want some answers, or even a clue or two, about what to expect.  And for now the best way to do that, I think, is to educate myself about brains and malformations and effects of shallow sulci.  But in doing so I have to read about the things I fear.  How 84% of children in one study had uncontrollable seizures, how 58% in another study had no language ability.  I hate that my son is going to be a statistic.  I hate that doctors are interested in him because they want to see what he will be able or won’t be able to do.  I hate that my beautiful little boy, with the best laugh in the world, is going to have so many struggles ahead.  And the truth is I hate that he may be this way because of something I did when I was pregnant.  Right after we got Jackson’s diagnosis we had some chromosome testing done.  It came back that Jackson had no chromosomal abnormalities, meaning by the looks of the chromosomes he should have been normal.  Then we went and saw a geneticist.  This was tricky because Kevin and I are both adopted so we have no medical history.  The geneticist asked us a bunch of questions and told us her best guess was that it was just a fluke.  There is however one test we can do – it costs $3000 and there is a 4% chance we might get an answer.  For $3000 I want a 100% chance at an answer.  Needless to say we didn’t do the test.  We just chalked it up to being a fluke.  The neurologist told us that it could have been as simple as Jackson moving wrong in the womb and cutting off blood supply for a 30 second period.  A fluke.  But it was my job to grow him. I tried so hard to do everything right and somehow I failed him.  As I sit and read these studies and the reality of Jackson’s life is slapping me in the face, I feel guilty.  I wish I could go back to being pregnant with him and try again.  I try to remember anything and everything I did when I was pregnant to try and pinpoint where I went wrong.  I know in my head that this is a waste of time and energy.  There probably wasn’t anything I could do.  I just can’t help it though.  I think I will always have a sense of guilt.  I guess that is why I keep punishing myself with these darn medical studies, looking for answers.  Answers I may not get for 15 or 20 years, if ever.  I’ll keep reading and learning, turning my good days into bad, for my baby.  I’ll do it for him, because he is so worth it.

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