Mystery Lane

Mystery Lane

Friday, February 4, 2011

Moving On

Well the feeling sorry for myself/why can’t my son have a normal brain blues are moving on.  Thank god.  I really hate going through all that.  I know only I can control it, but it still feels like it is out of my hands.  I don’t like feeling sorry for myself or for Jackson.  I really don’t have a lot of things to feel sorry about.  We have a beautiful home with heat, a pantry full of food, lots of love and support, a wonderful family, supportive friends, and the bills get paid.  Feeling sorry for myself just makes me feel guilty and ridiculous.  But it comes and goes regardless of all the arguing I do about it with myself.  I guess this is one part of having a special needs child that I still haven’t learned to accept.  It may take a while. 
Today Jackson and I went to Adams Elementary and did a presentation for the Guild School.  The Guild School does a Penny Drive every year to raise money.  So they go to the schools and talk about what the Guild School does and they usually have a family there to talk about their child.  Jackson and I have done the presentations for the last two years.  I always start by saying “Jackson has a rare brain condition called Congenital Unilateral Perisylvian Polymicrogyria.”  It never fails to get a response from the kids!  There are always a lot of wide eyes and murmurs.  Last year during one of the presentations a little girl raised her hand and said “Are you sure something is wrong with Jackson, because he looks just fine to me.”  Today a little boy raised his hand and declared “Jackson is sure pretty!”  Followed shortly thereafter by a little girl who said “Jackson is really, really, really, really, cute.”  Boy do I love these presentations!  Who doesn’t want to stand up in front a gymnasium full of kids and hear how cute their son is?  But the real reason I go is because I think it is important to let little kids know that not everyone is the same.  They need to know that there are kids who are different from them, but in the end are still just kids.  I hope when these kids grow up and see someone different they will think of Jackson and not make fun of them.  And secretly, although I am a little ashamed to say this, I hope Jackson’s good looks helps him escape any bullying and being made fun of that is in his future.
The seizures are still happening.  They are pretty numerous, sometimes 5-6 a day, although minimal in intensity.  I think he might be having more but because they are so quick I miss them.  Mostly they are just quick 1 second jerks that don’t alter his ability to continue doing what he was doing.  It is just so frustrating and confusing to me.  How could he go 27 days without a seizure and now just resume them?  Why are they different than the seizures he was having before they stopped?  Was it the B6 that stopped them for a while or was it just a fluke?  And why can’t I get a definitive answer to any of my questions?  The good news is that Jackson’s epilepsy was recently discussed at the Epilepsy Conference in Seattle.  His neurologist here in Spokane has also been consulting with some of the epilepsy specialists at Seattle Children’s.  We go in Tuesday for an appointment to hear the ideas/suggestions that came about from these discussions.  I am anxious to hear what other doctors have to say.  I am also a little nervous.  I hope they have come up with some ideas that may help Jackson’s seizures or even give us a better understanding of what is happening in his little brain.  But I also fear that our option may be the surgery (Corpus Callosotomy).  It’s scary to think of them opening up Jackson’s head and doing surgery on his brain.  I try to imagine how I will possibly cope with being in the waiting room while my little baby is laying on an operating table and I get sick to my stomach.  But the idea of stopping Jackson’s seizures is also a wonderful, beautiful thought.  I think I may be getting ahead of myself but I am trying to prepare myself for anything and everything.  For now, I will patiently wait for Tuesday morning to come.
Today I went and bought some liquid Fish Oil for Jackson.  I’ve heard about other parents of PMG kiddos giving it to their children to help with cognitive ability.  I figure Jackson could use all the help he can get.  I’ve never been one of those vitamin/herbal remedy kind of people.  In fact today was the first time I think I’ve ever been in a Mother’s Cupboard type of store.  I’ve always been a strong believer in medicine.  It’s taken hundreds of years for some of these medicines to be developed and if it will make an ailment go away I’ll take it.  But since having Jackson and having medicine become part of our daily life I look at it differently now.  Especially after weaning Jackson off of his first seizure medicine and realizing how much that medication numbed him up.  I want to make sure I’ve explored all the options and tried everything I can to help him.  If that means becoming one of those natural remedy/herbal supplement women then so be it.  But if you see me wearing tye-dye shirts with long flowing skirts, flowers in my uncombed hair, no shoes and bells on my ankles please stop me and tell me I’ve gone too far.  I simply want to help Jackson, not become a free bird hippie.

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