Mystery Lane

Mystery Lane

Friday, January 28, 2011

Tough Week

I go through each day taking care of my little boy.  I take him to his therapies, appointments, make sure he takes his meds, eats well, gets a good nap and receives approximately 453 kisses a day.  In doing this I don’t think much about the fact that Jackson is different.  He’s just my baby.  Yes, he goes to therapy and has epilepsy that we must keep under control, but at the end of the day he is just a regular little boy to me.  When you love someone you don’t spend your time focusing on their disabilities, you just focus on loving them.  Inevitably something comes along every couple of months or so that reminds me that Jackson isn’t a normal little boy.  This week I got the reminder.
As we transition Jackson into the Spokane Public School (SPS) system we had to have evaluations done.  They need to know where Jackson is developmentally so we can create an appropriate plan for him.  We could either have SPS or Jackson’s therapists at the Guild School do the evaluations.  We chose his therapists at the Guild School because they know him better.  So the last couple of weeks they have been testing him.  On Monday we got our first evaluation from Jackson’s physical therapist.  It was hard for me to read.  Anything that is focused on Jackson’s disabilities is hard to read.  Jackson’s physical development is currently rated at 6 months, which means his abilities are that of a 6 month old baby.  When I read that it made me cry.  I don’t really know why.  I know Jackson isn’t a normal 2 year old.  It doesn’t surprise me that he is at that stage.  I guess maybe it is because we have just seen so much progress with him lately.  I feel like he has been doing a little catching up.  Then to read he is still so far behind it hurts my heart a little. 
A couple of days later I was driving somewhere and there was a Mom with her little boy walking on the sidewalk.  He was probably about Jackson’s age.  It was so cute watching them on their walk and I suddenly felt sad that I can’t take little walks with Jackson.  How I would love to hold his little hand every day and walk down to the mailbox to get our mail.  There’s lots of little things I would love to do with my son, but can’t.  Though I try not to think of them very often, they creep into my mind here and there.  And I cry.  Jackson is so beautiful and perfect to me.  98% of the time that is all I focus on.  But the remaining 2% really, really hurts.  I wish it would go away but I know it won’t.  The trick is just getting through it.  Or in my case, cry my way through it.  I know from experience now that it will linger for a few days and then go away.  Then life will get back to normal for me.  A couple of bumps in the road this week, but the road is starting to smooth out again.

Saturday, January 22, 2011

And They’re Back

The seizures have returned.  I think Jackson had about a 27 day break.  Both Kevin and I noticed these quick little jerks this week.  It was hard to tell at first if he was having a seizure or if he was just moving quick.  But the last couple of days they have become definitely noticeable as seizures. Although, these quick little jerks are still a huge step down from what his seizures had become.  When I told my sister last night she said “Oh I’m sorry Stace.”  The weird thing is that I am really ok with it.  Don’t get me wrong, I loved, loved, loved that he wasn’t having them and I wish he would never have them again.  In fact, I’d be willing to give one or all of my limbs if Jackson could be seizure and brain malformation free.  It’s just that now things feel “normal” again and I am not waiting on edge anymore.  I really had this fear that because of the long break, his brain was building up a grand mal seizure and I was, and am, petrified of that.  So for now we are seeing these quick little jerks that most people would probably not even recognize as a seizure.  I just hope they stay minuscule like they are now.
Oddly enough, earlier this week the happiest little boy in the world that had been living with us started getting a little grouchy again.  I secretly wondered if the seizures were back.  Then a couple of days later Kevin confessed that he had seen a couple of jerks but just didn’t want to tell me.  I told him I had seen a couple of jerks too but just wasn’t sure.  Funny how we were trying to protect each other. 
I belong to an online email group of parents with kids with PMG (polymicrogyria – part of Jackson’s condition).  This week a lot of people were talking about B6 and Fish Oil.  B6 is what we have been giving Jackson and seemed to have some effect on his seizures.  Some of the other parents who give their children B6 said they gave it to help improve behavior.  Some of these seizure drugs can really alter behavior and personality.  Apparently the B6 helps the kids with their behavior.  So then I began to wonder if maybe that was why Jackson had become so happy.  Was the B6 helping his behavior and making him happier?  Who knows?  Yet another reason why my blog is called Life on Mystery Lane!  This week I plan to contact Jackson’s pediatrician and neurologist to find out if he can take Fish Oil.  Fish Oil is good for cognitive development, and Jackson needs all the help he can get in that area.  Plus one mother in the group mentioned you can buy it in liquid, flavored form.  I looked it up and sure enough there are lemon, strawberry, and orange flavors.  You can put it in juice and Jackson wouldn’t even know.  I really like that idea as the kid now takes 10 pills a day plus his Flinstone vitamin.  He’s really a trooper about it but one more pill might send him, and me, over the edge!
One bright spot this week is that I have really noticed Jackson moving and using his left arm and hand more.  He typically has his left hand in a fist and his left arm hugged up to his chest.  But this week he has really loosened up and his hand is open more and his arm is out and about.  This morning he was laying on the floor with his left arm up alongside his head.  He never has his arm up like that!  He still has days where that arm and hand are tight, but I am seeing more and more days of them being loose.  That is a really good thing.  It means his brain is sending a message to his arm and hand.  Historically, his brain hasn’t liked communicating with his arm and hand.  Maybe they’ve decided to accept one another and work together. 
Progress is slow with Jackson, but extremely memorable.  It’s one of the perks of being a special needs parent.  I mean really, how many of you parents of a neurotypical kid can remember when they first put their left arm up alongside their head?  Betcha can’t.  But I will!

Monday, January 17, 2011

Special Education

I wanted to be a teacher since my first day of Kindergarten.  My Mom once told me a story about how I would play “school” with my friends when I was little.  I would assign them homework and if they came over to play the next day without their homework I would tell them to leave.  So it wasn’t a surprise that I went to college to be a teacher.  The one area I never wanted to teach was special education.  I just didn’t have the patience or understanding nature for it.  Ha!  Ironic huh?  I’m being taught a lesson, I just know it. 

After a career of avoiding the world of special education, I am now thrust into it.  Last month we had our first meeting with the Spokane Public Schools to begin the IEP process.  For those of you not familiar with this world, and IEP is an Individualized Education Plan.  Every child in Special Ed has an IEP that identifies their needs and how those needs will be addressed in the public school system.  All of the sudden Special Ed has become a big focus in my life.  I’m now reading a third book on the IEP process and how to advocate for my child.  It’s scary to me.  I’m afraid I will miss a little detail about Jackson that will prevent him from getting some service he may need.  Plus, I can’t stand Spokane Public Schools.  After working for them for a year I encountered miserable teachers, rude office staff, and unfriendly principals.  I’m not a fan.  But this is the new road I just turned on and will have to drive down.  It’s going to be a bumpy ride.
George Bernard Shaw said “This is the true joy of life, the being used up for a purpose recognized by yourself as a mighty one.”  Well this is my purpose now, and it is a mighty one.  Jackson is entitled to an education just like any other child and I will do whatever I have to do to make sure he gets that.  He may not be able to walk or talk but that doesn’t mean he is less of a person.  He deserves a chance.  Don’t worry Jackson, Mommy is on it!

Friday, January 14, 2011

Different Worlds

"When sailors thought the world was flat, that knowledge structured everything about how they thought and behaved. The news that the world was round caused a profound shift in behavior and in peoples perceptions of what was possible. The world did not change, but what was thought to be true about it changed. Because of this change, people sailed their boats very differently based on the new paradigm of the world being round."
~ A&R Turnbull

When I first read this passage I thought of how I was living in a flat world until the day we got Jackson’s diagnosis. But more recently when I came across it I started thinking about the convoluted world of Jackson’s seizures. Which, by the way, I am happy to report that we are now on Day 23 of seeing no seizures!

When we first saw the neurologist back in July of 2009 he told us there was a pretty good chance we wouldn’t be able to control Jackson’s seizures. After trying a few medications that never controlled his seizures we knew he had “intractable seizures”. So not only did I have to deal with the devastation of the diagnosis but also with the knowledge that I would go through each day watching Jackson seize. And quite honestly I got used to it. I hated every freakin’ second of every stupid, stupid seizure, but it became a part of our life. In reference to the above passage, I learned how to sail my boat differently. Now here we are on the 23rd day and I feel like someone told me the world is indeed flat and now I have to adjust my sails again. But I also feel on edge. I can’t seem to relax about it. I now wake up every morning thinking “Is today the day the seizures come back?” I was talking to one of Jackson’s therapists about it and she said “You’re living in limbo.” I am! Having said that, I can’t even begin to explain how wonderful the last couple of weeks have been. Jackson has been ridiculously happy, he didn’t cry at all in his therapies this week, he is interactive, cuddly, looking at us and focusing. It’s been amazing. Every night we play with the IPad and he is really interested in it. The other day he watched the whole movie Despicable Me (1 hour, 35 minutes) while sitting in his high chair. This week one of his therapists said “Who is this kid?” He’s a kid on a well deserved electrical discharge vacation.

I always wondered what Jackson would be like without seizures and now I know. I’m very thankful for that. If the seizures come back tomorrow, I will be sad. But I’ll be thankful that he got this long rest. And I’ll be able to carry all these happy memories with me.

Saturday, January 8, 2011

Thankless Job

The other night I was talking on the phone with a fellow mommy, and we were discussing how amazing it is to be a parent but also what a thankless job it is.  I think we have all heard that line about being a parent is the most thankless job in the universe, but until you become a parent you just don’t realize it.  Our conversation got me thinking about why we are so happy to do this thankless job. 
I’ll never forget the moment when Jackson was a couple of weeks old and I put him down in his crib for a nap and it hit me like a ton of bricks.  LOVE.  I realized I loved that little baby so much my chest physically hurt.  It was such a different kind of love, totally raw and painful, but beautiful.  I realized then how much my parents loved me and then it hit me, GUILT.  I sent my Dad a card in the mail that day apologizing for every mean thing I ever said or did to him.  I had an all new appreciation of him and all the memories I had of growing up. 
So is it love that entices us on the journey of parenthood?  I don’t think so.  You can’t really imagine that love until the baby is born.  It’s definitely love though that keeps us going through the journey of parenthood.  Here are some mind boggling examples of my love for Jackson:
Puke:  I have been puked on more times than I can count at this point.  I’m not talking spit-up people, I’m talking chunky puke.  And I have the stained clothing to prove it!  There have been days where even I smell like puke and I just have quit caring.  There’s always the chance that I have a huge stain of puke on me that I don’t even see until I go out in public.  In fact, if I don’t have some kind of puke debris on me I start feeling naked.  I’m like “Where’s the puke?”  Jackson’s puking is thankfully getting better and I am overjoyed at the thought of new clothes (for me).
Poop:  Ahhhh the ultimate proof that you love someone is when you clean up their poop.  Jackson thinks there is some kind of tug of war option when you are changing his poopy diaper.  You go right, he goes left, you try and lift his butt up and he pushes it down, you try to hold him still, he tries to roll.  You would think he would be like “oh good, Mommy is going to get this stuff off me.”  Instead he is like “I am under attack!  I must fight for my life!”  But that in no way compares to when he is enjoying his morning naked time on the floor in front of the fireplace when he decides it’s time to go.  There’s no bigger proof of love than cleaning up a baby who has rolled in his poop and rolled and rolled and rolled! 
Obstinance:  All children are obstinate.  My little late bloomer Jackson is just now starting to show this side of his personality.  Since he can’t communicate through words he communicates through actions.  His new thing is pushing you away with his right hand/arm.  You try to wipe his face and he grabs the towel and pushes you away as hard as he can while I try to push as hard as can to get to the face.  Wiping his nose?  Forget it.  This one involves movement of the whole body – the head is going in every direction, the arm is pushing you away, the body is writhing in raging motion.  At that point a parent really has to decide how important a booger nose is.  Sometimes Jackson doesn’t want to go anywhere.  He of course only lets you know this when you are trying to put him in his car seat.  This is when you discover that Jackson is freakishly strong.  If he doesn’t want to go in his car seat, he arches his whole body and screams.  When he is really against it, it is nearly impossible to get him to bend his body.  Trust me, I’ve tried.  Obstinate or not, I love that freakishly strong kid.
I haven’t mentioned all the other reasons I must really love Jackson.  Things like months of sleepless nights, the demons possessing his body during teething, the unexplained seemingly endless crying, his piercing screams (the kid has a set of lungs), and his shoving and kicking if he doesn’t want me near him. 

Thankless job?  You betcha.  But there is also a saying "Parenting is an investment that has the biggest returns."  At Jackson's age of 2 years, 8 months Kevin and I have reaped the equivalent of $130 million dollars in our returns.  And I didn't even have to buy a lottery ticket. 

Thursday, January 6, 2011

Seizures oh seizures where have you gone?

As I write this we are on the plane flying from Orlando to Denver.  Jackson desperately wants to sleep but can't get comfortable.  He is also very interested in what I am doing as he keeps looking up at the Ipad.  I think he thinks I am watching cartoons or playing games without him. But he's happy and that is good when you are trapped in a small container of flying metal with 90+ irritable travelers.  We are on our way to Colorado after spending 15 days with Kevin's wonderful parents in Florida.  Despite the cold weather and the attack on our immune systems, we had a great visit.  Now we will spend 2 days in Denver visiting friends and family before heading home to Spokane. 
As many of you know Jackson is plagued by seizures.  At the beginning of November we went and saw his neurologist at Sacred Heart about getting more aggressive with his seizures.  The doctor upped his current seizure medication by one pill and suggested that if there was no change in his seizure activity then we should look at the option of adding another seizure medication called Depakote.  We went home, began giving him an additional pill every day and a week later nothing had really changed.  After doing some research on the new medication – Depakote – there was no way I was putting him on that medication.  I read scary stories and medical literature that involved intense behavior issues and liver failure with Depakote.  It’s just not something I’m willing to risk with Jackson.  But I do want him to get better, so I decided to try something. 
Throughout my research on epilepsy and Jackson’s neurological condition, I have read that B6 is good for the brain.  It is like food for the neurotransmitters.  I’ve heard about other parents giving it to their seizure prone children and seeing some good results.  I even asked our neurologist about it, who responded that it couldn’t hurt but probably wouldn’t do anything.  Now here we were talking about adding, what I believe to be, a dangerous medication and all the while my Mommy gut told me it was time to try the B6.  First I called the pediatrician to make sure it was safe for children (it is because it is water soluable), then I bought a bottle of B6 and began giving it to him about a week after we upped his seizure med.  I should also mention that after our neurologist appointment I decided to start journaling Jackson’s seizures.  Jackson was having an average of 4-5 strong seizures a day that lasted 10-20 seconds each.  Then we upped the medication and gave him the B6.  Shortly after that his seizures started decreasing in strength and occurrence.  By the second week in December we were only seeing one mild seizure a day.  However, he was probably having more that we just didn’t catch because they were so mild.   Then Jackson got sick while we were in Florida and had quite a few seizures for a couple of days while he was feverish.  Although, he quickly went back to his one mild seizure a day after feeling better.  Then something weird happened.  We didn’t see any seizures for a day.  Then 2 days.  Then 3 days.  Then 4 days.  Well here we are on the 12th day and we haven’t seen any.  12 DAYS!!!!!  Jackson has never been without seizures for a day since he was 14 months old.  Again, I think he might be having little ones that we just don’t notice, but still I think his little brain is getting a rest.  I can’t begin to express how excited I am about this, nor how scared I am.  Scared?  Really?  Because my son isn’t having seizures?  I know it sounds weird.  But it is a little freaky to me.  I worry what is going on in his brain.  Is it like the calm before the storm?  Is he going to have a huge grand mal seizure any day now?  Or is his brain just working a little better?  Did his brain make some kind of growth that is causing better communication between the two sides resulting in no seizures?  Or is something really scary going on in there that we just don’t know about?  I think I must be some kind of freak to worry so much about this but I do.  One thing I do know is that seizures are sometimes caused by factors like stress, being tired, stimulation, etc.  I think Jackson has gotten rid of a lot of stress and pain over the last couple of weeks since those last two teeth came in.  He has definitely been a happy, happy boy lately and seems more content.  Put the kid in front of the TV with cartoons, give him a dinosaur to bite on and he is happy.  It does really seem like he has changed in the last couple of weeks and I don’t know why.  Just like I don’t know why the seizures have stopped.  I don’t miss them, that is for sure.  I just hope that his little brain is ok and has just decided it is tired of seizing.  I think the really scary thing is that I don’t know my son without his seizures.  They have become a part of who he is to me.  Just like all his other special quirks, the seizures tell me he is Jackson.  Now here is a new little boy who isn’t having seizures, seems happier, is sitting up for long periods of time, is content to just sit around and bite on a dinosaur head, and is seriously watching cartoons.  Who is this kid?  With or without the seizures I am loving watching my boy change.  He is so cute and funny and every time I look at him my heart tries to bust out of my chest in a huge leap of love.  I know the seizures haven’t left, they are still there.  But for the time being - stay away seizures, give my baby a brain rest.

Monday, January 3, 2011

Jackson’s Song

The other day I heard a new song on the radio and although it was meant to be sung about a girl, it reminded me of Jackson.  The song is Just the Way You Are by Bruno Mars.  Here are the lyrics that make me feel like this song was written for Jackson: 

When I see your face
There's not a thing that I would change
Cause you're amazing
Just the way you are

And when you smile,
The whole world stops and stares for awhile
Cause you're amazing
Just the way you are

Oh you know, you know, you know
I’d never ask you to change
If perfect is what you're searching for
Then just stay the same