Mystery Lane

Mystery Lane

Wednesday, February 23, 2011

West Side Story

Well we are headed back to Seattle Children’s Hospital.  Jackson is going to be having a series of tests done March 21-23.  We will be staying at the hospital for 3 days.  3 very long days I imagine.  While we are there Jackson will see a neuropsychologist, occupational therapist, and social worker.  He will have a long term Video EEG, 3G MRI (a more detailed MRI than a normal scan), and a PET scan.  Jackson had a long term Video EEG done last March.  This test measures his brain waves and seizure activity.  He will have electrodes attached to his head for about a day and a half, which means he is stuck in the hospital room during that time.  He’s much more active than last year so it will be interesting to see if we can keep him entertained for that long.  If all else fails I’ll just dance.  He seems to think that is funny.  The 3G MRI is something I have wanted to have done since we saw Dr. Dobyn’s back in October.  It is a clearer scan of the brain and can look at the layers of the brain.  This may give us an answer to the mystery of his left side of the brain.  That is his good side, but for some reason that is where the seizures are coming from.  A PET scan measures how your brain is functioning.  It looks at blood flow, oxygen use, and glucose metabolism.  Jackson will have to be put under anesthesia for the MRI and PET scan.  I always hate that.  I am not good with medical stuff.  I get queasy at the sight of blood.  Unfortunately for Kevin I usually end up leaving the room when they do the IV and he has to deal with it. 
While I am dreading this visit, simply for the intensity of it, I am anxious to get the results.  I so want to know more about Jackson’s brain.  It is such a mystery to me.  The more information I can get, the more I could possibly understand the complexity of what is happening in his head.  Knowledge is key, especially when you have a child who has a rare disorder.  Even though this trip is probably going to be an exhausting, frustrating and inconvenient one, it will be worth it.  Poor Jackson is going to be miserable.  He does not do well with new places and getting out of his routine.  One bright spot though – the cafeteria at the hospital has perhaps the best Snickerdoodle cookies I have ever had.  I plan on giving Jackson A LOT of those cookies!

Sunday, February 20, 2011

Hello World

I think my last few posts have been kind of downers.  Truly downers.  I’ve actually had friends tell me I’ve made them cry.  I guess that’s a good thing in a way.  It means I have people out there crying with me and that is oddly comforting to me.  I’ve no doubt had some bad days lately, but like every bad part of life you move through it.  The thing about going through the bad times is that I get so caught up I forget to look around me and see the two most important reasons for getting over those bad times  – my boys, Jackson and Kevin. 
The other day as I watching Ellen (yes I love Ellen and watch her every day, she makes me laugh and cry almost every day with her kindness) one of my favorite bands was on, Lady Antebellum.  They were singing one of their songs called Hello World.  I hadn’t heard it before and it was beautiful (listen to it if you can).  I got on ITunes later that day and downloaded it.  After listening to the lyrics it reminded me of what is important.  I thought I would share them in my blog today since they kind of represent how I feel right now in my life.  So here you go, oh and by the way, HELLO WORLD!
Well, hello world, how've you been?
Good to see you, my old friend
Sometimes I feel as cold as steel
And broken like I'm never gonna heal
I see a light, little grace, little faith unfurl
Well, hello world

Sometimes I forget what living's for
And I hear my life through my front door
And I'll be there, oh, I'm home again

Oh, the empty disappears
I remember why I'm here
To surrender and believe
I fall down on my knees
Oh hello world, hello world, hello world

Monday, February 14, 2011

For all the Moms out there

The other day I was watching Supernanny and the mom she was trying to help was truly lost.  This woman was a stay at home mom with 3 out of control kids (hence the Supernanny show) and a busy lawyer husband.  Supernanny asked her what her purpose in life was and her response was “Mom, Mom, Mom.”  She had become a mother and it was game over for her.  She didn’t feel like she was a person with wants, desires, needs anymore.  Her whole life consisted of being in the house with 3 little kids.  I sympathized with her and felt sad for her.  Not because being a mother is an awful thing, it really is an amazing role, but because some mothers lose who they were pre-children.  Just because we become mothers doesn’t mean we stop being women with dreams and goals.  But some of us do find that what we want for ourselves is suddenly unimportant because there are children to raise.
I’ve always kind of considered myself to be a feminist.  I subscribe to Ms. Magazine, find it appalling that the United States has not ratified CEDAW, support Women’s Rights issues, generally think women can do anything a man does (I have climbed mountains while attached by rope to other men and have found that in dire situations I can pee standing up) and more (I have given birth), and that women are just simply better than men.  Well we are.  J  Feminist or not, nothing prepared me for the choices I made after Jackson was born.  Long before I was pregnant with Jackson I always envisioned staying home and raising my children.  Despite that lovely vision, I knew I would probably be a working mom.  It was just more practical financially.  When I got pregnant I still figured I would go back to work after my maternity leave.  Then Jackson was born and there was a game change.  Kevin and I did look at a couple of day care centers the summer after Jackson was born and I did spend quite a bit of time doing research on centers in Spokane.  But the very thought of dropping off Jackson with some stranger while I spent the day away from him just nearly killed me.  I couldn’t do it.  I didn’t want to leave my baby.  So we made some adjustments in how we lived and just like that I became a stay at home mom.
The first school year of being a stay at home mom I was able to get out of the house one day a week and substitute teach.  The same thing I do now.  But after getting Jackson’s diagnosis I took a year off to focus on doctor appointments, therapy, and adjust to our new life with a special needs kiddo.  During this year I really started thinking about how I wasn’t earning any money, wasn’t contributing financially.  It was difficult for me.  I have always worked.  I have always made my own money.  Now here I was living off my man.  Every time I bought something I felt guilty for spending Kevin’s money.  Let me say here that Kevin shared none of these feelings and continually reassured me that it was a non-issue.  It was all my baggage.  It bothered me so much that I finally bought a book about going from a career to stay at home mom called “This Is Not How I Thought It Would Be.”  Indeed.  The funny thing was I just couldn’t read the book.  The author was this high powered career woman turned stay at home mom who nearly destroyed her marriage over jealousy of her attorney husband who began working more to support them financially.  She resented having to stay home, losing her career, while her husband was out there advancing his.  She did, however, bring up some good points like Social Security.  When women stop working to stay home and raise children, their social security earnings goes out the window, leaving them worse off in their retirement age, becoming even more dependent on their men and their retirement.  That sucks. 
For the most part I just didn’t feel the same way she did.  I love teaching but I love Jackson more.  I didn’t necessarily miss my career as much as I just needed to feel like I was contributing.  But I was contributing.  I was taking care of my son while cleaning the house, washing and folding numerous loads of laundry, doing dishes, cooking, paying bills, running errands, making appointments, and on and on.  Trust me, after spending most of my life working I can honestly say being a stay at home mom is the hardest job I have ever had.  The problem is society doesn’t see it that way.  There’s this misconception that we stay at home moms are watching soap operas all day while sitting on the couch eating Bonbons.  Being a stay at home mom isn’t a “real” job right?  I would beg to differ.  If being a stay at home mom was a salaried position, I would be making $134,121 per year according to  I’ve never made that kind of money!  I suppose if we did get a salary then being a stay at home mom would be looked at as a valuable position in society. 
So what’s the point to this posting?  I don’t know.  It’s late I am just rambling.  I guess I just feel like I have changed my feminist thoughts.  Yes, women can have it all.  But some of us don’t want it all.  Maybe we just want to stay home with our babies and be there for every little milestone they make instead of hearing about it from someone else.  Perhaps some of us want to continue the careers we worked so hard to achieve and despite loving our children passionately we need that career because it makes us the women and mothers we are.  Or it could be that we want to stay home but just need a little break from mommyhood once or twice a week to feel like we are members of our society.  I don’t think there is a right or wrong answer.  I think we all have to do what is best for us individually and for our families.
The Supernanny mom ended us signing up for some college classes.  Just signing up for those classes made her light up.  She was finally doing something for herself.  While she was a mom, she was also a smart, independent woman who just needed a reminder that there was life outside the home and she could be part of it.  To her I say “You go Momma.”  And to all you moms out there, whether you are a working mom or a stay at home mom, I say “May the force be with you!”    

Wednesday, February 9, 2011


So much for moving on, I’ve fallen into another self pity trap.  This one consumed my whole day yesterday.  Lots of crying, being pissed off, and generally in a crappy mood.  The day started with our appointment with the neurologist.  For those of you who are special needs parents, you probably know where this is going.  Appointments with specialists tend to go really good or really bad.  So yesterday Dr. Reggin was going to tell us what came out of the conference he had with the other pediatric epilepsy doctors regarding Jackson’s case.  In the past we have been told by doctors that a Corpus Callosotomy (brain surgery separating the two side of the brain) was probably an option for Jackson.  While I hated the thought of surgery on his brain, I loved the idea of him not having seizures.  The surgery has been fairly successful in stopping seizures.  Yesterday we found out that wasn’t an option.  I was kind of crushed about that.  Instead our options at this point, in my opinion, suck.  There’s the Ketogenic Diet, increase in current medication, new medications or implanting a vagal nerve stimulator.  Well I have looked at the Ketogenic Diet.  It’s ridiculously difficult to administer, is an extremely high fat diet, limits food options, and hasn’t proven to be effective long term.  Since Jackson’s favorite thing in the world is to eat, I am not willing to do this limiting diet that would change our lives to administer it.  How about increasing his medication?  Well the medication he is on now is Topomax/Topiramate.  He hasn’t had any noticeable side effects.  Dr. Reggin told us yesterday that with this particular medication there have been signs of decreased language ability.  The higher we go with the medicine, the more we may be hindering his language.  Jackson’s language is already hindered.  Do we want to possibly damage it more?  The two new medications Dr. Reggin mentioned were Depakote and Sabril.  I’ve looked at Depakote and it scared me because of the potential liver damage and behavior problems.  Dr. Reggin did say the liver damage was mostly in children under 2, so that reassured me a little.  Sabril is relatively new and has proven to cause eye damage.  If Jackson goes on this medicine he will have to see an eye doctor every 3 months and have electrical tests done to see if damage is occurring.  That leaves us with the Vagus Nerve Stimulation.  This is where they implant a stimulator under the skin that will send electrical impulses to the vagus nerve in the neck to stop seizures.  I don’t know a lot about this procedure but I do know it is usually used in people 12 years and older and it doesn’t necessarily stop the seizures, just reduces them.
So what option would you take for your child?  They all suck right?  When Dr. Reggin asked what we would like to do I thought (not out loud) that I would prefer to be hit by a semi truck and be put out of my freaking misery.  I really thought that.  As I sat there and listened to all of his explanations for each option I had to fight back the tears.  I didn’t want to be there.  I don’t want to deal with this shit.  I want Jackson to have a normal brain.  I want to be at some Mommy and Me class.  I want to spend my days chasing after Jackson at the playground, going down the slide with him, coloring with him, hearing him say “What’s that Mommy?” about 600 times a day.  Instead I’m in some sterile room in a hospital listening to a neurologist tell me that there isn’t a lot we can do to fix the seizures.  Which in turn will continue to delay his development and no doubt lead to severe mental retardation.   So there I went, into more loathing in self pity.  The worst part is that when I’m hurting I want to call my Dad.  I just want to hear his voice.  I need to hear him say it’s going to be okay.  But I can’t.  My Dad died last year.  And that only makes my pain worse. 
So for now we chose to up Jackson’s current medication by one pill.  Next week I will take him in for some blood work to make sure it isn’t too much medication for his system.  In the meantime, Seattle Children’s Hospital will be contacting us shortly to make an appointment to go there for a long term Video EEG (at least 24 hours) and a PET Scan.  We may also have a 3G MRI done here in Spokane.  That is a more detailed MRI that can show the layers of the brain and detect damage better than a regular MRI.  I’m all for these tests.  The more information we can gather about Jackson’s mystery plagued brain the better. 
I woke up today determined to not be down.  I am not going to do the self-loathing thing.  I’m sick of it.  Instead I am just going to hang out with my little boy and enjoy who he is.  We are going to go to Costco (his favorite store) and maybe a walk this afternoon.  I am going to drag myself out of this.  I have a little boy who needs and deserves a Mom who isn’t constantly feeling sorry for herself.  I can’t let the cruel fate that was inflicted on Jackson consume my life.  Jackson is too good for that.

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.