Dec 1, 2007

Hi there - it snowed today!  So beautiful.  So white.  Hard to be in a bad mood when it's snowing out, ya know?

So my "condition" is "premature ventricular contractions" - and I've already heard from one mom of a seizure child that she has them too!  Go figure.  She too laughed at the advice to "rest, avoid stress, avoid travel, and sleep."  What-ever!  I was laying there hooked up to all the monitors and I felt a huge palpitation and said "there one is!" and the Dr. said - yep - I see it on your monitor - a huge jump.  Kind scary, I have to admit.  One day later my heart is still scattered, jumping, extra-beating.  And I now have a sick infant with a fever of unknown origin who hasn't stopped crying all day.  "rest....take it easy...."  please.  But life goes on, ya know?

Cody had a seizure free day - which is one more strange fact.  There just is no formula here at the Graves house.

That's about it.  I'm feeling a little dark and down...I'll be honest.  Sometimes things just feel heavier than other times.  Christmas season can get overwhelming.  I just have to tell myself that Christmas shopping, decorating, sending cards, etc. simply isn't going to happen.  There are so many people who serve us that I wanted to do something special for.  I had so many plans.  I wanted to get out adorable Christmas photos & updates.  I wanted to buy presents for my family & friends.  But it's just not going to happen - any of it.  It makes me sad.  This season of life just doesn't allow for those things.  All of my energy is taken just managing cody's seizures, our life, and our bills, shopping, laundry, Dr. appts., etc.  Just this week we have 4 Dr. appts on top of 7 therapy sessions in next 5 days.

I'm finally meeting with a DAN Dr (a Dr. who specializes in Autism.  DAN stands for "defeat autism now.")  DAN Dr's specialize in biomedical approaches - supplements, diets, body work, etc.  I'm going to use him as an advisor for the GF/CF diet.  That diet is taking the life out of me and we haven't even started!  Research research research.  Cody can't even play with play dough.  He has to have his own toaster.  He has to have his own set of pots & pans.  Oy vay.  I'm tired just thinking about it.

We're also meeting with the UW metabolic/genetic team to try to determine further what the "source or cause" of his seizures are.  This appt. was made 6 months ago - that's how long the wait list is!  We meet with 4 people - geneticists, metabolic Dr's, neurologists.  All will collaborate about Cody's case.

Then on Friday we meet with his neuro at Childrens, Dr. Saneto.  We meet him every 3 months to discuss meds, therapies, testing, etc.

The week after Christmas Cody starts public school.  And the week after that he goes into the hospital for a 6 day EEG.  I guess Christmas just isn't even on my radar screen...so much else to try to navigate.  Sometimes the drill of life with this illness just gets so exhausting.

Please pray for us as we are tired, frustrated, and needing some good turns of events.

love, Shawna

Dec 5, 2007

So much has gone on since my last post.  Cody had his 3 year old photo session and (of course) wouldn't smile even once.  We decided to try to shoot again tomorrow outside to see if we have more luck.  Boy, if you want a patient, caring and persevering photographer, I highly recommend www.markmegphotography.com.  They are a husband and wife team who come to your home - they live here on the Eastside and they are super reasonable price-wise too.  For a special needs child, it's so nice to have someone willing to take 2 stabs at a photo session instead of saying "too bad" after one failed one.

Monday we had an appt. with a DAN Dr. (specialist in autism) that I've been waiting months for.  He's one of the best in the area and in much demand.  I *really* didn't want to be late.  And that...was the day...it flooded.  I gave myself an hour and a half - got on 405 north and it took me 2 hours to go 3 MILES.  No kidding.  I made the colossal mistake of getting on an off ramp for 522 only to find out moments later - they had JUST closed that freeway.  We sat.  And sat.  And sat some more.  Me and Cody.  And a stand still on the freeway offramp.  About the time he started eye poking and self-barfing from boredom, I four-wheeled over the meridian, back down the freeway in the WRONG direction, and got on an offramp going back to my house.  hahaha.  I hope there are no state troopers reading this.  A string of cars followed me too.  I just couldn't sit on the freeway with him for hours - what if he had a seizure?  So I took matters in my own hands.  :-0

I had to re-schedule the DAN Dr., obviously - and the next opening is after February.  Darn.

Then yesterday we had an appt. I've also been waiting months for - I called 7 months ago and this was the first opening.  Luckily, no floods in that direction!!!  So we went to the U of W hospital and met with a neurodevelopmental geneticist, a pediatric neurologist, and another geneticist.  They looked over every single inch of Cody.  My intent for the meeting was to continue to try to find a "cause" for Cody's seizures and brain issues.  They were a really nice team...and when it was all over...ran 2 blood tests.  One was for a sodium channel something or other....and the other was some chromosone test.  They said these are really the last 2 things to do to find a cause.  There was nothing too new.  They said most likely we'll never know.  And that Casey (and future babies) have about a 5-7% chance of the same flukey thing happening.  So that was good news....odds are pretty low.  I asked my favorite "what's the prognosis for the future" question.  They gave me the common "there's no telling" answer.  But they said we have one thing going for us -- that they can't find a "syndrome" or "cause" which means his future is a question mark rather than something set in stone.  There are no other kids with "this" -- so there's no predictor of what this will look like in the future.  They said most likely - he'll continue to inch along developmentally throughout his life.  In other words, he'll always be globablly delayed.  But, of course, the mommy in me chooses to attach myself to the "there's not telling" answer instead!!

I came home from that appt. and my dear husband was kind enough to take BOTH boys for the night so my mom and I could go to a women's Christmas dessert!  And this is what I saw upon coming home:

Dec 7,2007

Today is Casey's 5 month birthday!  No sign of seizures yet.  Infantile spasms hits typically between 5-7 months (Cody's showed up at 6 mos. of age.)  So I hold my breath every day and question every single move he makes.  I just can't even imagine life with another child with infantile spasms.  I trust he'll be fine - the odds are on his side - yet still, as a mom, I worry every day.

Today we had a huge appointment with Cody's neuro at Children's.  We discussed brain surgery.  What a topic.  It makes my brain hurt just thinking about it.  We go in for his 6 day in-hospital EEG on Jan. 14th.  The neuro said that 6 days will dicatate everything.  IF the seizures look like they are mostly coming from the 1 spot that the PET scan seemed to show they were....then we talk about the surgery.  IF the seizures are more generalized and there aren't enough of them coming from one spot, he is not a surgical candidate.  I asked the Dr. if he was excited about the idea of surgery - and if he thought it was possible.  He said we just won't know till the EEG.  He said if the seizures look mostly to be coming from the right hippocampus, then brain surgery would be a "no-brainer."  haha.  But there would only be about a 50% chance of a reduction in seizures.  It wouldn't be curative - it would just *hopefully* reduce the seizure amount.  And on top of that, it would impair some function but we don't know yet exactly what function.  But it would also - theoretically - increase development.  Lots of variables.  I'm not even "going there" till we have the EEG and it's ruled possible or not.  My dear online friend Sue has a son who is having surgery over Christmas (howz that for tiiming!)  She has better odds of the seizures being actually cured.  For Cody it's only "palliative" meaning it won't cure the seiuzes, only *maybe* reduce them and improve his quality of life.

We discussed Cody's brain abnormalities a lot.  The PET scan showed that he hypometabolizes glucose bi-laterally (on both sides of the brain.)  But (I learned today) - THAT is just a symptom of some underlying problem that is probably genetic.  So those brain abnormalities as well as his seizures and his autism - are all "symptoms" of the underlying issue.  And that underlying issue still remains a mystery.  And all the experts still chalk it up to a probably genetic fluke that wired his brain incorrectly.  So I asked whether the hypometabolism - or the genetic issue - could get better or worse over time.  He said yes.  He said as the brain matures - the genetic issue will reveal it's course and whether it will continue to cause the brain to hypometabolize - or whether it will go more into the background and allow the brain to function better.  Time will tell.  Interesting stuff.

Lots to absorb this week with all these Dr. appts.  The pediatrician yesterday found that Cody has a severly red throat which means he's gotten my cold.  Darn.  Please, if you can, pray that his seizures won't spike again in response to this cold.

That's it for now -

with love, Shawna

Dec 10, 2007

I'm writing this at 4:30 a.m....Cody's wake up time.  I've been up since 3am with Casey.  I am so exhausted - please pray for us if you have time.  We just get no sleep - ever.  Casey does not sleep with me anymore - and I give him a huge bottle before bed + rice cereal....and he still wakes up 5-6 times a night.  It's not reflux, or gas...it's just him.  I've tried crying it out.  I've tried co-sleeping.  I've tried not co-sleeping.  I've tried EVERYTHING and he just won't sleep through the night.  At 5 months, it's not unusual.  But it's just insane to have him awake from 3-4am.  Then to have Cody wake up for the morning at 4:30am.  It's just unmanageable.  I don't know if we're going to have to hire someone overnight or what.  We are both just so darn tired.

That's it for now - just a prayer request.  More news to come once I'm awake.

Love, Shawna

Hi there - what a morning.  Whoever had time to pray....I felt it.  I'm now officially in a good mood at 4:30pm.  Still tired, but have overcome the dark cloud over my head.  So Cody got up at 4am.  I finally got him back to sleep at 6am and had a precious 2.5 hours before we had to leave for therapy.  I snuggled up next to him in his bed ready to take a nice nap with him when I heard:  "waaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaah" - Casey had just woken up.  Go figure.  So I staggered in to get him and fantasized that I could lay him down next to me so I was sandwhiched in between the two boys - and nurse Casey back to sleep. "Oh Lord, let it be so!"  It worked!  I nursed Casey to sleep and once again dared to close my eyes for a nap.  No sooner did I close my eyes, I thought to myself "wouldn't this be a perfect time for a seizure" - and I heard the telltale sign - Cody screaming bloody murder next to me.  I had to disengage from Casey which woke him up, I had to hold Cody which made Casey cry, and suddenly at 6am I have Casey screaming next to me...and Cody shrieking from a seizure next to me.  I chose that moment to look up at God and scream myself...."ARE YOU KIDDING ME?"  Sigh.  Both kids were up.  And once again I had the lovely dilemma of needing to hold Cody but having Casey screaming to be held as well.  I just felt so beat up.  I just couldn't be trying any harder.  There's not one more square inch of myself or one cell in my body left to give these two boys.  So I got up and dealt with life.  Fed them both.  Got them dressed.  etc etc etc and out the door we went to autism class at 8:30am.

So that was our morning.  Thanks for letting me vent about it!  I don't know what we're going to do.  I don't know how we're going to get sleep.  But we're going to seriously discuss that tonight because we can't go on like this.  One or both of us is going to drop dead from the stress.

Other than that, the day was uneventful.  Cody had a good class.  He's on an errand with my helper.  Casey's taking a nap.

Speaking of stress, to my great grief and sorrow...my milk is drying up.  It started about the same time that I started the heart palpatations.  That week was just so stressful with 11 seizures a day.  I think my breastfeeding days are numbered.  I did my share of crying over it this weekend.  There's just no resurrecting it, either.  I've tried pumping every 2 hours.  I'm taking every supplement on the planet.  My body just is boycotting the stress.  I've had my share of conversations with God about it.  It is just so unfair.  This one small thing - this one thing that would be so good for Casey - I just don't get to have.  In a life full of stress, drama and pain....being able to breastfeed him would have given me such great joy.  Such a small request.  So many other women get to do it effortlessly.  I've begged the Lord for it.  Yet every day there's less and less milk.  Every day I use more and more bottles.  Why.  I keep asking Him "why?"  I just wanted this one good thing.  Just this.  I'm surviving everything else.  I don't get much for "me" in this crazy life of ours.  This I wanted for me.  Denied.

Reminds me of Joni Earekson Tada's book where I read about her facing a loss on top of a loss.  She was paralyzed from the neck down at the age of 18.  Still - she went on to get married to an amazing guy.  She dared to dream of having a baby.  Her paralysis didn't prevent it.  They started trying.  She painted pictures of the nursery she wanted - the baby clothes.  They tried and tried.  No success.  Ultimately she learned that for a reason completely unrelated to her paralysis, she'd never be able to conceive.  A crushing blow.  Altho her sufferings are different than mine - I do understand what must have been her heart cry at the time - "why?  I'm never going to be able to walk.  I've accepted this.  I am trying to live gratefully in spite of it.  And one thing - ONE THING that would have given me so much joy in the midst of this furnace - ONE THING that so many people get to enjoy - a baby - denied."

She didn't have any brilliant answers to these types of turns of events in her book.  But somehow it helped me to hear her situation.  When I get to Heaven, it will be this that I ask about.  I won't so much question the global idea that I have a special needs child.  I will be more apt to question things like not being able to breastfeed - such a small, simple desire - in the midst of this trial.  Why deny me that?  Why deny Joni a baby?  Life is so hard.  So full of losses.  And right now I grieve that my dream of breastfeeding is dying.  I did get in 5 months - altho it was a struggle every single day.  That I'm grateful for.  I just wanted to much more.  I was so ripped off of Cody's childhood - I just wanted this so badly...a "normal" experience with Casey.  A normal way to feed him.  Instead I'm relegated to heating up bottles of formula and packing them with me everywhere I go.  SO not what I wanted.

I get frustrated with people who minimize my sense of loss over this.  Who act like it's no big deal to switch to bottles.  That may be true for THEM....but it is not true for me.  It is a big deal for me.  For reasons they will never understand.  When you have a sick child like Cody - the next child brings new fresh dreams with him.  New opportunities to experience what the first child never was able to do.  I couldn't breastfeed Cody.  His immune system is horrible - he gets every bug on the planet.  I wanted to give Casey the best start.  I wanted to bond with him.  When you have a child who doesn't make eye contact much of the day - having a little baby breastfeed and bond with you to that degree is such a dream come true.  There are so many reasons I wanted this.  So if you know me, please don't say "he'll be fine.  you gave him a good 5 months."  I know that.  I know it's not the end of the world.  I know he'll be fine.  But for me, it's a huge loss.  Please honor that.

Like so many special needs moms (and others who endure trials) - I have to choose to trust the Lord with it.  What else is there to do?  What are the options?  God is in control.  He gives and takes away.  Blessed be His name.

On a different note, I have a friend whose son, James goes in for brain surgery over Christmas.  If you feel led, will you lift him up in prayer?  He has infantile spasms like Cody - only there is this ray of hope that  if they remove the seizure focus, he can improve dramatically.  His mom is on pins and needles.  It's just NO fun being on the brink of brain surgery - especially at Christmas!  But I say, no better time for a miracle than Chrstmas!  It's a long process involving 2 separate surgeries.  First they put electrodes directly on the brain to map the seizures for a week.  Then they go in again and remove the part of the brain where the seizures are focused.  Quite a big deal as you can imagine.  "Please Lord, be with James and his family.  Give them peace.  And if it's Your will, release this sweet little boy from the grip of seizures."

love, shawna

Isn't that cute!  Super daddy!  Go, Don!  Go, Don!  Haha.  The first words out of his mouth were, "help!"  haha.

That's our world today - still having yucky big seizures.  Still trying to be grateful and positive in spite of them.  Still struggling with being grateful and positive!  haha.  I got a cold too - that's no fun.  My mom here all week help so that IS fun!

love to you all,

Shawna

Dec 13, 2007

Hi folks.  One more week almost under our belts!  Yahoo.  We love Fridays at our house.  More of daddy.  And this weekend mommy has a getaway!  My friend Paula graciously invited me up to her farm in Stanwood for an overnight girl-time.  She's going to foil my hair, and she even offered to take Casey overnight so I could sleep!  Not to mention talking talking talking.  Did I mention talking?!?  She has the most beautiful serene acreage - and she is such a kindred soul.  We've known each other for years.  We've seen each other through mountains and valleys.  I can't wait to break from my routine of Dr's and therapies and get out of this house to the country.  Thank you Paula!  And thanks daddy for taking Cody overnight so I can try to re-charge.  It is well needed and much appreciated.

This week has flown by - a blur of therapies.  Cody had autism class 3 days this week.  Co-op class 1 day.  2 occupational therapy sessions.  1 speech session.  1 Physical therapy session.  Every day we have multiple therapies.  So the weekends are nice to just let him be a little boy and not push "development."

Thank you to those who wrote me about my breastfeeding woes.  It was lovely to get your emails validating my feelings.  So many of you also had to give up the dream.  For one email friend, it still stings 8 years later.  This goes deep.  And I appreciate your support and validation.  I'm down to feeding Casey about 1/2 breastmilk and 1/2 formula.  Sigh.

Cody's had a pretty good few days seizure-wise.  We haven't seen any of the big ugly ones in about 3 days, thankfully.  I'm getting a tad bit more sleep - not a ton - but a bit more.  For that I'm grateful.  Casey's starting to babble.  It's the cutest thing ever!  When he's mad, he furrows his brow and says, "ba bab ba bah....blah blah blah!!!"  His intonation and expression make it seem like he's really trying to tell me something big - and he acts as if I should understand!  He just gets cuter by the day, my little guy. 

On a totally unrelated note, I've had tons of people ask to see Don bulldogging so here he is.  He was a steer wrestler on the ProRodeo circut.  Once Cody was born, he had to give it up - which was heartbreaking for him.  He had to sell his horse, Truck, horse trailer....Cody's illness just wasn't conducive to traveling every weekend.  Don still has a hard time when summer rolls around - he misses it so.

We met on a blind date - and I knew he was "in the rodeo world" but had no idea what that even meant.  I just knew he was cute.  So on our 2nd date he invited me to watch him steer wrestle and my eyes popped out of my head.  "WHY DO YOU DO THAT TO THOSE POOR COWS?" I screamed.  I soon learned they are not cows, they are steer (male version of a cow.)  I won't lie and say I loved the rodeo life.  Ten hour drives, dirt, manure, heat, flies and outhouses.  Not my cup of tea.  But Don loved it.  I tried.  :)

So there's a fun picture of his good ol' days.  The days before seizures, before hospitals, and before we knew the smile of the bravest boy on the planet!!

love, Shawna

Dec 16, 2007

Oh gosh - what a great 24 hours I've just had!  I drove to Stanwood to have an overnight "retreat" - at the invitation of my friend Paula.  I arrived with Casey and the pampering began!  She made a yummy treat to eat.  We talked for hours.  Her home is cozy and beautifully decorated - and on lots of acres of farm land.  It was So quiet!  She made me a yummy dinner.  We watched a movie on TV.  She took Casey overnight while I slept a whole 8 hours STRAIGHT!  Poor Paula, Casey was up from 12:30am - 2:30am and then stirred again thru the night.  Yet I came upstairs this morning to her smiling face.  She didn't seem to mind and boy was I grateful!  She made me pancakes for breakfast then cut and foiled my hair.  She dyed my eyebrows.  She took Casey and I took a super long hot shower.  She got People and Us magazines (my faves) and she let me sit downstairs and watch cable TV (also my favorite) while she cooked me food to take home including "cowboy caviar" and chocolate chip cookies (stopping at times to bring me some cookie dough downstairs...and fresh baked cookies.)  What a nurturer she is.  And how badly I needed it.  I feel refreshed, rejuvinated, and much loved.  Thank you Paula!!!!!  And this isn't just someone who has nothing better to do!  She has a farm to take care of.  A job.  And a pretty rough year (or three!) herself that she's endured.  Which makes me all the more appreciative that she gave to me - when she too could have used a day of non-stop attention and pampering!

And then there's my very giving husband who took Cody from yesterday afternoon to tonight.  He had planned to run in a 10K race in Kirkland but just as he and Cody prepared to go -- Cody projectile vomited all over in the car.  Poor Don - he had to clean it all up and give up the race which he'd had his heart set on.  What a bummer.  Cody seems fine otherwise - I think he just had an off day.  About once a month he runs about a 100 degree low grade fever and throws up a time or two - for no reason.  It never leads into a cold or flu.  Nothing ever comes of it.  It's the strangest thing.  But Don, being the good daddy he is, brought him home and took his temperature and gave him some motrin.  Cody was back to himself by nightfall.

I hope you all had a good weekend.  I sure did.  Tomorrow is Cody's last day at the Kindering Center - then it's Christmas break and he starts public school after that.  It will be sad to say goodbye to the therapists and teachers and friends we've come to adore the last 9 months.  Change is always so hard for me.  I don't like goodbyes.  I don't like starting over.  Everyone at the Kindering Center knows Cody.  They know me.  They know Casey.  I've driven there 5 days a week for 9 months.  I know the path well.  We see all the same people.  I hang out with the same moms.  We all know each others stories.  It's going to be hard to drive away knowing our time there is over.  Hard to know that we have to start with a new group who don't know us yet.  It takes awhile to "get" Cody.  But I'm trying to be positive and feel excited rather than stressed.  His new school team really seem like neat folks.  They really have made efforts to figure him out before he's even started school.  But change is still hard - even good change.  So tomorrow we change.  I'll try to embrace it....

Happy Monday!

Shawna

Dec 19, 2007

check out this video for a first!

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And Cody had his last day at the Kindering Center Monday - boo hoo.  So many people who have loved him and taught him that we had to say goodbye to.  The end of an era.  Next is "big boy" public school on Jan. 3rd.  Till then we have our days free (scary!)  His playroom gets awfully small after a few hours of the same toys and activities!  My mom is here to help with the boys so we can better keep Cody busy.  Here's a video of Cody in his autism class as they sing the "Goodbye" song to him forever.

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My little boy is 3.  Wow how time flies.  I dreamed last night that he could talk - I didn't want to wake up, ths sound of his voice was so sweet.  I hope I have more dreams like that one.

love, Shawna

Dec 22, 2007

Hi there!  Hey if you haven't heard this, it's SO worth listening to.  I've had it sent to me by several friends so you've probably heard it already.  It's a little boy in Houston who called a radio station - and here's the conversation.  http://www.youtube.com/watch?v=zCdZwitrNoY&eurl=http://www

Hope you are having a nice week!  I am stoked because Don's off till next Thursday!  Today we had Cody's former nanny (from Vancouver) stop by with freshly canned pears, applesauce, etc. from her own fruit trees!  Hi Megan and thanks!!  Mom's been here for a few days to help out now that Cody's out of school on winter break.  It was mom's birthday yesterday - so she and I went to the waterfront in Kirkland and wandered thru the shops and galleries and even ate lunch out!  It was so nice to get out.  We took Casey and left Cody with Shoshannah.  So nice to feel the brisk air and hear the Christmas music.

Cody's having a string of "good days" in terms of seizures.  He is having little "seizure quakes" as we call them where he won't go into a full blown one, but he'll kind of tip over and make a weird face.  But other than that, ever since I reduced his lamictal we have only seen 3 of those huge ugly ones since the 15th.  He's having other problems - mostly mania.  Two nights this week he's been up till 11pm just being a wild man...laughing hysterically...and not "fun" laughing..."weird" laughling.  Not sure if it's a drug reax of what.

We head down to Keizer Oregon tomorrow to spend Christmas with Don's family.  I'm now creating a list of the 100 things we need to bring.  Our daily routine is my only saving grace so anytime we leave the house, it's a huge challenge.  It's a 4 hour drive so we leave at night once the boys are asleep.  Cody would never make a 4 hour drive awake unless it was a day he'd had a bunch of seizures and was in a stupor.

I saw a cardiologist this week to follow up on the heart palpatations.  I only write about this if any other special needs mom out there has had them.  It's sure worth following up acc. to this Dr.  They are going to do an ultrasound in Jan. to rule out any problems and if the ultrasound is clean, he said that these are stress/lack of sleep induced and he can give me beta blockers if they become too painful or frequent.

Oops, gotta go - Casey is pitching a fit.  One word - teething.  Ugh.

:)

Merry Christmas to YOU!

Shawna

It's midnight and I'm still awake.  Don and I went to bed with the boys at 8:15pm and I still can't sleep.  Such a curse - when I SHOULD be sleeping I can't!  I have had trouble my whole life with sleep.  Getting to sleep initially takes me at least an hour...always has.  And it takes me at least an hour to get back to sleep once I'm woken up.  I used to manage it fine before kids.  But with a baby and a Cody, it really wreaks havoc and I always feel like I have myself to blame!  I find it so hard to  unwind - so hard to let go of the worries and stresses.  Do you ever get that way?  I just laid there for 2 hours and my mind was spinning with stressful thoughts.

I'm very nervous about Cody's upcoming week in the hospital.  I wish Jan. 14th would never get here.  Don got the week off, thankfully.  But there's one more week of his precious vacation time we'll spend in a hospital.  I just can't fathom doing those 6 days with Cody having to be confined to a bed, more or less.  With a nursing baby who I'm trying to salvage every last nursing opportunity I can get with.  One of us will have to come home and sleep with Casey every night.  More time I'll have to have him on a bottle.  Every meal will have to be brought in.  Casey screams from teething.  Cody screams from not having his beloved swings to help him cope.  These hospital stays just take the life out of me.  Anticipating it just rules my mind - especially when I lay down at night and the thoughts come.   I finally got out of bed and decided to write this down on my blog and request prayer - since it's obviously overwhelming me.  Just getting my thoughts out and requesting the prayer makes my burden lighter.

Then my mind floats to my friend Sue who is spending this Christmas in the hospital with her son James who is having brain surgery.  Talk about stress!  But they think there's enough of a focal point to perhaps rid him of seizures for life.  But the surgery is so grueling - forgive me if I've explained this already - I can't remember.  This is the same surgery Cody is a candidate for - our trip to the hospital on Jan. 14th will begin "phase 1" where they have a prolonged EEG to see where the most seizures are coming from.  This EEG will determine whether there is enough of a "focal point" in Cody's brain that can be removed.

James' surgery is in two phases - phase 1 is opening his skull and attaching electrodes directly to his brain and then monitoring him in the hospital for a week to see exactly where the seizures emanate from.  Phase 2 is then going back in and removing that exact spot.  It is risky.  It is scary.  There are no guarantees it will even help the seizures - only hope that it will.  Recovery is long and painful.  And Sue is going through this right now in New York.  It's things like this that keep my mind spinning when I lay down to sleep.  First I start thinking about Cody's hospital stay - then I think about poor Sue and James - and then I think about all the other moms I know whose kids are having endless seizures every day.  This Christmas is so hard for me.  I just can't buy into the Hallmark Card aspect of it.  Hard to hear the songs "walking in a winter wonderland" "tiny tots with their eyes all aglow will find it hard to sleep tonight".  I know of too many families in pain - ours included.  It's so sobering when your peer group is going through so much.  So hard to "celebrate" and put on a happy face when so many are in such pain.  It's not depression.  It's not pity for them or for us.  It's more like...a heightened understanding...a heightened compassion for those who are suffering.  That compassion and understanding make it hard to sleep.  They make it hard to "get happy" about Christmas presents and egg nog.  So many hurting.  So many brave little ones battling for their lives.  I guess for me, this Christmas isn't about gifts, carols, big dinners and such.  It's boiling down to a longing for Heaven - where all this suffering will go away.  Not just in our house but in so many others.  I want Casey to someday enjoy carefree Christmases full of traditions and fun.  But at the same time, just being born into "our" family will makes his holidays different.  We are a bit more somber than most.  At any give moment, I know someone who's child is seizing and headed for the hospital.  We may spend a fair amount of our own Christmases in the hospital because of Cody.  Our life is different than most and probably always will be.  We will find a way to create fun, traditions, and all that.  But this Christmas, this season with a little one and with this hospital stay breathing down my neck, I'm aiming for sheer survival.  :)

It's also tough to have to transition to public school on the 3rd.  At Kindering I had a team of therapists who supported me - who I saw every day - who came to our home.  That is all gone.  I feel so alone without it.  Such a stark change.  I know it will be fine and school will be fine.  But this change is tough.  I am going from the cocoon of his special needs school into the public school system where I know no one yet.  I will have to advocate and fight all over again for Cody's needs.  I will have to watch as they get to know him - and get to know me.  We had a good routine at Kindering - same thing every week - and I am a creature for routines!  Now I have no routine.  We go to school 1.5 weeks and then the hospital.  Won't be able to establish a solid routine again till mid-January.  That is tough.

So there ya go - all the things floating in my mind and keeping me up.  It may seem indulgent to just barf them up on this blog.  In fact I often wonder if my writings are perceived as a constant stream of complaining or negativity.  But the intent of my blog (for me) is to be real at all costs.  This is the one place in my lif where I don't have to put on a happy face.  I don't have to make it pretty or apologize for how I really feel.  I don't have to worry about 'what people think.'  Everywhere else I find myself trying not to be too dismal for fear of scaring people away.  I try to be cheerful and smiley 'out there.'  But in here - in my computer - I can just be me and tell it like it is.  I figure everyone has the chance to just not read it, right?  Kind of like TV - you can just change the channel if my endless droning bums you out.

But I'm learning thru this blog - from the emails I get so often - that I'm not so far from normal.  Whether it's a seizing child of some other crushing trial - people are in pain out there.  And I think it's just freeing to go ahead and admit it, don't you?!?  Life is hard.  Pain hurts.  Sometimes we wish God felt closer.  Or that He'd give us that miracle we long for.  This is our "new normal" - living WITH the pain instead of waiting to live when it finally goes away.  Often it doesn't go away.  I'm reading "A New Kind of Normal" which is the sequel to a book I tout on this site called "When I lay My Isaac Down."  It's super good.  Carol Kent is the author.  If you know a special needs mom, these are great books for last minute Christmas gifts.  I like the idea of "A New Normal."  My mom is a good example.  She lost my dad 3 years ago and she's living a "new normal."  She often talks about how hard it is without him.  She just told me that she was watching a really funny show on TV the other day - and she was laughing out loud at it.  Then she said she realized...and remembered...she was all alone in the room.  All alone in her home.  She said she so missed my dad.  She so missed having someone else there to laugh with.  Laughing alone was painful for her.  That's her new normal.  Trying to carve out some joy even though life has handed you a blow that isn't going to change.  Trying to trust God who allowed this blow.  Trying to find beauty among the ashes.  All so hard.  And it's everywhere you look - people in pain.  I used to love Christmas - the caroling - the shopping - the decorating.  My "new normal" is now just hoping for one more seizure free day.  It's trying not to cry on Christmas morning when Cody is oblivious to what a present even is - much less able to play with anything anyone gets him.  It's feeling a dark cloud over my head at the mall as I see the families with "typical" kids shopping together.  It's knowing I'll probably never hear my child speak - much less sing a carol.  It's giving gift cards because each time I tried to go shopping I had to rush home because Cody was seizing.  My new normal.  Yet you must find joy in it.  You must.  And the blessing for me, has been that I've had to let go of everything Christmas "was" - and embraced what it has boiled down to - the sweet simpliicty of just trying to trust and be grateful for Jesus.  There is life beyond this one - there is a Home I long for - there is a Savior whose birth we celebrate right now - who will one day whisk me away to that land.  I suppose it's a gift to feel that I can't connect with the Hallmark card version of Christmas.  It takes my focus to what's real...that there IS hope in Him.  That the trials and pains of this earth WILL pass away.  That this is NOT the end of the story.  Although Casey is born into a home where life (and holidays) won't be "typical" - I hope that he will find a depth to his life and to Christmas that he wouldn't have if he didn't have Cody for a brother - and if he wasn't born into this trial that he didn't ask for.

Okay - now I'm going to try to sleep again.  hopefully now that I've gotten this out of my head and onto my computer my brain will relax a little.  We'll see.....

Merry Christmas to you - know that if you're reading this I'm praying for you as I go to bed tonight.  Shawna

Dec 26, 2007

Hi there - hope your Christmas was dandy.  We got back yesterday from a 3 day stay in Oregon at Don's parents.  Boy, the stuff you have to pack with a toddler and a baby!  I spent most of the day Sunday making lists, organizing, packing and re-packing.  We had to drive down at 7:30pm when the boys were asleep because 4 hours in a car with them just isn't fun.  We had a nice time seeing family - we even hauled both boys to a Christmas eve service altho they both wound up in a side room nursery.  They pooped out before we could make to Christmas Even dinner out.  Next morning we packed them up and went to Don's sister's for present opening and breakfast, then back to his parents, then over to his other sister's for dinner.  And we hit the road for our drive home from there.  It was a whirlwind.  Casey's first Christmas.  He smiled all the way through it - basking in the attention of all his loving relatives.  Cody was fawned over and adored as well.

Don and I went through our usual battery of feelings.  At one point, Don turned to me and said, "I wonder if Cody will always have to be in a cage on Christmas?"  He was referring to the play yard we brought to keep him contained during present opening.  It was in the back of the room and we all just switched off getting in it with him and entertaining him while others opened presents.  Everyone was nice enough to give him a gift, and we all eagerly awaited to see if he'd tear the wrapping off of his presents.  But he just wasn't interested...in the wrapping or most of the gifts.  He has no idea what Christmas is.  Will he ever?  Hard to say.  But we managed.  And I pushed down the sad feelings and the painful feelings and put a smile on my face and found the things to laugh about and be grateful for.  At one point it started snowing and Cody's two little cousins ran outside to play with their new football.  I looked at Don and said, "you should go throw the football with them!"  So he got his coat and shoes on and ran out there and I'll never forget the juxtaposition that hit me next.  There was Don - athletic and thrilled to be outside in the freshly falling snow - throwing a football to his healthy, red cheeked nephews.  And here next to me was his son Cody in his cage - banging his head with his fist and biting the carpet.

"Merry Christmas, little one" I said to him.  He didn't look my way.  My quirky Cody - loved and adored but so lost inside himself.  No Christmas miracle for him this year - he had 15 seizures Christmas day - but I was grateful that at least they were all little ones.  He threw up in bed all over Don on Christmas Eve night and two times the next morning - who knows why - just a sensitive stomach and in a new environment.  We barely slept because he was up so much of the night Christmas Eve.  Then when we got home Christmas night he was up till 2:30am and the next morning I was up at the crack of 6am with Casey who was ready to rise and shine.

Our new normal.  Release expectations - release the need for things to be perfect - release the thought that I have to be perfect in this.  Allow for sad moments.  Allow for grieving.  Expect sleepless nights and unpredictability.  Know that I will be opening all of Cody's presents and thanking the givers graciously because my son not only has no words....he has no comprehension of what a gift is.  This is our new normal.  Not what we ever expected our Christmas to look like.  But what our Christmas has turned out to be.

In that book I mentioned in my last post, Carol Kent writes:  "I may never figure out the answers to the "whys" in this unbelievable bend in the road of our lives, and that's okay.  Being able to express my anger, hurt, frustration, and honest questions to You (God), without fear of retribution, is a good part of my new normal.  I still sometimes find myself beating into Your chest with my anguish, but I'm leaning into Your irresistible embrace more quickly than in days gone by.  I expect we'll have this tug of war for the rest of my life, but I know You love me - and it's okay."

I suspect the rest of my Christmases will be filled with equal parts joy and pain - and I accept that.  That mixture is becoming more and more familiar to me.  Carol Kent writes, "embracing your new kind of normal is the most emppowering choice you will make.  It transcends common sense.  It is resistant to old patterns.  it is sticky, uncomfortable, agitating, and difficult.  But it is liberating and life giving and spirit enriching.  It changes your life and the lives of everyone who joins you on your journey.  And then, quite unexpectedly you realize you are splashing hope into the lives of others because you have an intimate love relationship with the Source of hope.  Living in a new kind of normal has taught me that pain is pain is pain.  So how do we find courage for the long haul?  There's only one way - by experiencing the unconditional love of God that we, in turn, splash all over the people around us.  Experiencing His irresistible love in the middle of catastrophic loss (or even during life's inevitable challenges and disappointments) is so empowering that we automatically keep passing it on to other people.  And we live in constant astonishment that God uses broken people to minister to broken people.  We have been given a privilege (as unwanted as it might be) to hold up His name to the world around us in the face of hopeless circumstances.  Amy Carmichael wrote, 'I think it must hurt the tender love of our Father when we press for reasons for His dealings with us, as though He were not Love, as though not He, but another chose our inheritance for us, and as though what He chose to allow could be less than the very best and dearest that Love Eternal had to give.'  I want to insist that my prayers get answered with the favorable resolution I have requested.  But God says, "Carol, I have a bigger plan than you envisioned for this situation.  You think your life has fallen apart but I have a salvage operation in motion that will reach way beyond your family.  Trust Me.  And while you wait, you will experience that I am very close to the brokenhearted.  I will not leave you or walk away from You.  Keep holding on to hope."

I like that.   And I'm trying to embrace this salvage operation called "my life."

And below is one moment where Cody is connected, happy, and having FUN.  These moments are like gold to me - I cherish them and replay them in my mind over and over.  Following the video are family photos from Christmas.  enjoy.

Dim lights Embed Embed this video on your site

Dec 29, 2007

Wow - so THIS is how a full night's sleep feels!!!  My mom has been here a few days and has taken Cody at night.  (see a photo of her below with the boys.)  The first two nights Don got to sleep alone and I took Casey.  But last night I got to sleep alone and Don took Casey!  What a wonder - I slept from 11pm to 8am straight!!  Earplugs helped.  Poor Casey just had his first 2 teeth break through at the exact same time and he's been up all night for over a week from the pain.  So it was so nice to get a night to sleep without him crying every hour.  Don and I even went on a date last night to a movie at Redmond Town Center!  We saw "I am Legend" with Will Smith.  We left once both boys were asleep and mom watched over them.  I would have preferred a light comedy or love story but Don needs an action flick in order to not fall asleep these days.  It was scary and dark - would I recommend it?  I will say it kept me on the edge of my seat.  FOR sure.  No sex or swearing thankfully - just gore and suspense.  Anyway, it was nice to get out with Don and eat some popcorn and pop - and wander around the Town Center.  She went back hom today (boo hoo) so we are back to trading off boys and trying to feed, change diapers, clean, breathe, put down for naps, etc. as a couple.

Can you believe it's almost 2008????!!!!  I'm NOT one for resolutions (I always break them) but I do hope to get healthier this year.  I hope to cook more and healthier, get some exercise each day, breathe and soak in the sun thru my eyeballs every day.  I read that 20 minutes of sun in your eyeballs is the only real way to get vitamin D in your system and we desperately need vitamin D to boost our seratonin levels.  "They" claimed that 20 minutes of outdoor light in your eyes would stave off depression and change your whole being.  Heard it on the radio.  So I'm trying to get outside a bit and take my sunglasses off and just let the sun penetrate - and boost my levels of whatever it's supposed to boost.  I have to say, it helps!  So that's my attempt this year - to get out and get moving - and to get our whole family eating healthier instead of just surviving on whatever I can throw together at the last minute.

Happy New Year everyone - thanks for making us part of the last year.  You can't know how much it means to us.

Love, Shawna 

Dec. 31

Well, it breaks my heart to say the hard core seizures are back.  We hadn't seen one since December 15th and were holding our breath.  We lowered the lamictal dose around that time and he has only been having small seizures since.  But yesterday he had a huge one and today - 3 of them.  We are crushed (as we always are when this happens...you'd think we'd learn...)

I can't believe I'm saying this - but I hope he's getting sick.  At least that would make sense.  It's when the seizures change randomly that I get SO frustrated.  When he has big seizures associated with an illness or stress at least I don't feel crazy - I suppose it's that yearning for a modicum of control.  Typically when he gets sick - we see these big seizures about 3 days before any symptom shows.  That would mean that tomorrow or tuesday, I'd start to see a runny nose or something.  He does have a 100.3 low grade fever but he has that temperature more often than not.  He was just over a cold 2 weeks ago.  How frustrating if this is another one - he gets EVERYTHING! 

Darn darn darn.  I was hoping these seizures were fading and would fade down to nothing by Jan. 14th when his 6-day EEG is scheduled at the hospital.  I still hold out that fleece that his seizures would stop before that day and we wouldn't have to put him (and us!) through that hospital stay. 

That's it for now - it's going to be a long night and morning if he continues to seize like this.  So I'm going to go to bed while I can.  if anyone would have told me in my 20's or 30's that when I hit 40 I'd be going to bed by 8:30 I'd have shot them!  :-0

much love,

Shawna