Happy New Year everyone!  We spent midnight asleep, a sure sign we're getting old!  But we had a nice day - we ventured out with Cody which is always interesting!  We took him to the park which was fun...then to the Spaghetti Factory for lunch!  There he sat in his high chair - with all objects (plates, glasses, silverware, napkins, etc) pushed at least 2 feet away from him!  We kept him busy with crackers, apple juice, etc.  so it went pretty smoothly all things considered.  It was just nice to get out of the house as a family.  We rarely do that.

Sadly, his seizure freedom only lasted 1 day.  He's now back to having horrible 2 minute long spells where he turns blue.  Had one in the middle of the night last night.  It's quite scary to wake up to your child screaming bloody murder and flailing about with their eyes rolled back in their head!  Quite disheartening.  This new drug he's been on will reach full effectiveness in a few days - but it's not appearing to do much so far.  Which means trying another drug next....with another 2 week wait for it to hit full effectiveness!  ugh. 

Well I must go and fix breakfast for the little guy.  Love to you all,

Shawna

Jan. 3

Poor dear Cody has had 3 seizures in the last hour.  Life just does not seem to get better for him.  He had so many 2 nights ago we had to sedate him with rectal valium.  Such a drama, our lives.  His eye poking has increased to the point that I now can't turn my back on him, even for a second.  I feel a migraine setting in as I write this.  I just want SO badly for these seizures to go away and leave my son alone.  How long can a mother watch this torture? 

I guess that's all I have to say today.  Very tired.  Very sad.  Yet one more drug marked "ineffective" on Cody's seizures.  On to the next one and it's own set of grueling side effects. 

Sorry so dismal - just gets that way some days.

love to you all!  Shawna

Jan 5.

What a doosey of a week.  My attitude has been, admittedly, very poor.  Life with a sick child really has a rhythm to it.  You have spells where you stay postive...but when something happens to give you some hope (like a couple of seizure free days)...your expectations raise, you start fantasizing about life without seizures, you even plan a vacation in your mind to someplace sunny and wonderful.  The idea of life without seizures is so tantalizing that a seizure free day sends me to fantasy land.  Which is where I was when the "day after" the seizure free day turned out to be one of Cody's worst seizure days ever.  My first inclination is to feel SO bitter and tell myself, "don't hope....don't EVER hope...it makes things so much harder!"  But I know hope keeps us all afloat. 

I prayed a very specific prayer - that the Lord would show me "how" to love him and trust him...and most of all hope...without being crushed by the reality of these seizures and the "why Cody?" that keeps me chained to my pain.

He led me to a section of a great book, "All and Only" that I'd read in the past.  The chapter that spoke to me about my prayer was on Joseph.  It's kind of long, but worth the read:

"Joseph.  There aren't many Josephs.  We would rather pet our bitterness than wear a crown.  And that is precisely our choice...

It's funny:  the one who seeks no "whys" knows...eventually...the answer to the questions he needed not to ask. 

Joseph, that magnificent hero, became such because he pushed past the obsession with "why" and dealt instead with "how."  How can I please God?  How can I serve God?

If ever a man had the hostile right to ask "why" wouldn't it have been Joseph?  A favored son.  A faithful son.  Clean...malleable yet strong enough to report the wrongs of his brothers when asked to.  Yet cruelly rejected for his God-originated dream and for his sterling character. 

We hear no railing speech of "Why, God?"  Instead, a simple setting to the task at hand.  The question of Joseph: "what is Your will here?" 

The human question is "Why, God? Give me all Your reasons and then, maybe then I will follow You."

The legitemate question, the one that can be known is "what?"  God's "what" is "Do the task at hand.  Live the life you find."  And Joseph did it.  Only to suffer again, not from sin but because he wouldn't sin!  We would have screeched, "what good is it?  God is not fair and there is no justice!"

Oh, but I AM.

In the hell-hole where any reasonable person give up because his "why" saps all his innards, the caged Joseph asked again...."what?"  "What is Your will?  What is my task?"

"Do the task at hand.  Live the life in which you are trapped.  Do it well in the faith that I have a Divine Aim."  And Joseph did.  Even there.

The question is not "why" but "what" and through the devoted acceptance of what God wants, the "why" of His purpose emerges.  In some off-the-record unveiling to his heart, Joseph came to see God's unimaginable but brilliant purpose.  We know the end of the story.  Joseph didn't.  For him it had been a blank mystery, a puzzle he couldn't have solved. It was God's secret.  Only He could reveal it.  And He did.

"God sent me ahead of you to preserve for you a remnant on earth and to save your lives by a great deliverance."  Genesis 45:7.

Trauma creates a dilemma with God.  It throws His character into dispute, His power into doubt, His love into question.  Suffering twists our view of God so He seems both small and inept.

Suffering doesn't need explanation.  For your suffering has a life of it's own, full of unborn ideas, pulsing with mystery, rich with potential to solve your future suffering, and - most amazing - your past as well.  Your suffering holds the secrets to your appointed lot and is therefore the hiding place of your power.  You must value your suffering enough to coax it's treasure into your using.

In the end Joseph found out why.  He'd been in school, the making of a ruler, whose power saved many lives.  The "why" unmasks itself only to the faithful.  For Joseph, I AM had been enough.  God could have.  God didn't.  So God had a good reason.  Most men never make it to the end....to see.

Their furious "whys" have gnawed their mammoth potential down to a tiny bitter nub of ineffectiveness...long before the end."

Pretty cool, huh!  Love, Shawna

Jan. 7

6am...I've been up since 4am.  Had a dream a seriel killer was chasing me through the woods  - after crawling in thru an open window in the house.  I was searching for a tree or bush large enough to hide behind but they were all so far off.  Now, THAT will wake you up!  Probably the scariest dream I've ever had.  I immediately checked every window in the house to make sure it was locked.  Yikes.  Honestly, I just couldn't get back to sleep!  Not because I remained scared, that wore off after about a half hour (kind of...) but it had just jolted me awake so much that I couldn't get to sleep again.  And it's my night without Cody too.  Wouldn't ya know?!?  Now I'm not much of a dream analyst (altho I interviewed many of them when I was a reporter...) but I keep dreaming about things chasing me.  Common, I know.  But this re-curring theme kind of ties in with my current struggles with Cody's illness.  Feeling like I have no control (which I don't.)  Feeling like it's a "force" that is scary, dark, and foreboding (which it is!)  And ultimately, feeling like it's killing me.  Funny how our subconscious spills into our dreams!  I try to reign in all those feelings and counter them with the Truth.  Sometimes I'm successful.  But when I am successful during the day, the fears often creep into my dreams. 

I did get some good news - I had an "ultra screen" which is a screening for old moms like me to detect chromosonal abnormalities in the baby.  At my age (42) the odds of Downs Syndrome are 1 in 49.  The test came back that the baby is negative for Downs - and for another thing called Trisomy 18.  So that was great news!  One more bullet dodged.  I'm feeling less nauseous every day - but it's still lingering!  I still can't be around mayonaise, purell, or canned meat.  Haha.  Seriously.  I will barf in the presence of any of those!  The fatigue is still alive and well.  I am just SO tired all the time.  Course getting no sleep doesn't help with that much!  Pregnancy has exacerbated my sinus issues (as it often does) so my stuffy nose often wakes me up during the night.  Not to mention Cody rolling all over the bed or waking up in the middle of the night.  Lots of variables.  Luckily I"m used to no sleep after the last 2 years.  We had the initial few months after cody was born that was just regular "no sleep" cuz of a new baby.  then he got seizures so it was no sleep cuz of those.  and soon it will be no sleep cuz of a new baby again!  As Sonny and Cher would say, "And the beat goes on....."

That's it for now.  Cody will have the whole house up within minutes.  I left Don a note that I was up most of the night and I'm putting ear plugs in.  He usually takes  Cody downstairs when that's the case to try to give me some quiet.  They're pretty cute, the two of them on their mornings together.  I walk down to find Cody eating "daddy breakfast" which is peanut butter toast and apples.  With football on in the background, of course.  When there is no football on in the morning, Don drags out his vhs tapes of past football games.  They bond over food and sports.  Typical guys!  :) 

love, Shawna

Jan. 12

What a week.  After a few days of no crazy "turning blue" seizures that last 2 minutes...Cody erupted today like a volcano.  In 40 minutes, he had 11 seizures - each lasting forever and making him stop breathing.  He'd finish one, take a breath, and go right into another seizure.  It was surreal.  He had the most frightened look in his eyes...I will never forget it.  I gave him an emergency med (rectal valium) which didn't do a thing - he kept seizing right thru it.  I made a desperate call to the neuro who said to try one more dose of valium and if that didn't work, bring him to the E.R.  UGH!  Luckily the next dose seemed to help.  He still had a few seizures between noon and bedtime...but no clusters of 11 of them!  I have no idea what brought this episode on.  But we are about this close to an ER visit as I write this.  Please pray for Cody's brain to settle down.  One more cluster of seizures and we are out the door. 

It's 10:45pm and he's still up - wired from all the drugs.  Why do these crazy times always happen on 4 day weekends?  OHSU is closed Monday, of course.  But the neuro told the Dr. on call about Cody's situation so hopefully we'll have the ability to communicate with that Dr. if need be.  LIFE IS CRAZY!!!! 

Lots of stress.  Lots of lost sleep.  Lots of tears.  Thank you for your prayers - we desperately need them.

love Shawna 

Jan. 14

Today was MUCH better than yesterday, thankfully!!  None of the major huge seizures - just 8 littler ones.  He was pretty out of it from all the crazy seizures yesterday, tho.  Very grumpy and whiney.  Can't say I blame him!  The neuro had us put him on a daily mild dose tranquilizer for the time being - which may have helped the seizures today.  The downside is that while other kids are sedated by tranquilizers, Cody is hyped up by them!  Last night he didn't fall asleep till midnight and tonight it's 11pm.  Makes for a crazy sleep schedule when he wakes up at 7am sharp! 

And GET THIS!  Yesterday - after such a dramatic, ugly, horrifying day where we almost landed in the E.R. after all those major seizures - I fell into bed thrilled to have the spare room to myself.  Don opted to take Cody overnight so I could get a break and rest.  My head hit the pillow and I said to myself, "I can't WAIT to just escape into sleep and tell this day goodbye!"  That was at 12:30am after Cody finally fell asleep.  At 3am, I awoke to stomach cramps, vomiting, diarrhea....MISERY!  I was up from 3am on....barfing and feeling like I was hit by a truck.  FOOD POISONING!  We'd eaten at a take out mexican restaurant and I brought it home.  They have these awesome marinated carrot sticks that you can scoop out of a container and put in a "to go" box.  I planned on bringing them home for Don and I but on the way home, I munched every last one of them!  They were kind of pickled and really hit the spot - I've been craving vinegar lately with this pregnancy.  I got home and we ate our burritos and gave Cody bites of our food.  And I was the only one to get sick.  DARN those blasted carrots!  By 10am I was through - and only felt weak from no sleep and nothing in my stomach.  Would you believe I lost 5 lbs. overnight!  haha.  Quite an event.  And all on the heels of being totally spent from the day of seizures with Cody.  I can laugh now, but it was a horrible night.  As I threw up for the umpteenth time, I looked up at God and said, "wasn't the day bad enough without THIS!?!"  No answer.  I fear one of these days He WILL actually answer me and knock me off my chair!  I am grateful now, though, that I was a glutton and ate all the carrots myself!  I saved Don from the same fate!  :)

Anyway, that was our day.  Hope yours was a bit better!  With love,

Shawna

Jan. 21

Hello all - last night my mom had a grand mal seizure at the hospital.  Please please continue to pray for her.  She is very upset that she can't be at home.  I am driving up today to see her.

Also, we are moving back "home" to Seattle!!!  Don starts a new job on Feb. 6th!  So as you can imagine, we are FRANTIC packing, planning, showing our house, etc!  Driving up to see my mom every weekend makes things "seem" impossible to accomplish by our deadline - but luckily I belive in the God of all impossibilities!  My mom is the priority - and by serving her I know I am doing the right thing.  I just pray the rest will shake out in a way that allows us to make this move in an orderly fashion! 

We will be staying at a friend's cabin that sits behind her house on Lake Sammamish.   We'll be there up to 3 months - so as not to pay double mortgages while our house in Battle Ground sells.  Even if the house doesn't sell by late April, we will move into a house of our own in the Bellevue/Kirkland area because I will be 2 months prior to delivery and that's about as far as I want to push a big move!  It will tough enough finding, unpacking and organizing a new home (with Cody to tend to) at 8 months p.g.! 

I have to find all new Dr's for Cody (and that's no small task - a neuro, a gastro, a developmental Dr., a physiatrist, a pediatrician, a chiropractor, a naturopath, a metabolic & genetic dr., etc!!!)  The neuro is most critical as we need to not have a lag in Cody's care.  And for me, I already found a great OB and now just need to get a primary care physician, dentist, etc.  But the OB was the main thing - and that's done.  Whew!  Transferring all of Cody's medical records from every single doc down here will be a feat!  Running to each and every place and gathering them - copying them and sending them off.  Yikes!  Not to mention every day we have our house shown which involves keeping it spotless (not an easy task with "the destroyer" 2 year old!)  And we have to vacate for showings!  SOOOO much to do.  We haven't even begun to think about packing.  We're thinking of leaving all our "stuff" here till we move into a home up there - so as only to have to move it one time. 

That's our big news!  Exciting, scary, stressful.  I pray Cody adjusts well and doesn't feel my stress.  Every time I'm with him I make sure to take a deep breath and smile a lot.  Any new stresses affect his seizure threshold - so hopefully this transition won't do him too much damage.  I know there's a troup of friends at Calvary Chapel Eastside + other dear friends in the area up North that will love on him and make him feel instantly at home.  We are THRILLED to re-join our beloved church family in Bellevue.  How we've missed them!!!  Tons of them have ventured down to Battle Ground during the last 2 years to help with Cody - they have really made an effort to keep us part of the church faimly even tho we moved 2.5 hours away.  I was the church secretary there and hope I can somehow still serve in the church office even with Cody and a new baby.  I am praying already that God will provide a way for me to volunteer - even for a few hours a week.  I'm SO tired of my life being all about "us" and our vortex of issues.  I desperately want to give back - but it's so hard with the little one to get out and give of my time.  It's in the Lord's hands.  He will make a way if He wants me to help in the office.  And I hope He does! 

With love, Shawna

Jan. 24

What a horrid day.  Cody tossed and turned all night last night - threw up several times overnight from reflux.  I did not sleep 1 wink...literally.  At 6:30am he had 4 seizures one after the other so we had to give the rectal diastat rescue med yet again.  That knocked him out till 9:30 so I got about an hour and a half of sleep total.  yawn.  He continued to have 8 more seizures thruout the day too.  Just so crazy. 

On the bright side, we got an offer on our house that may just work out after all the fine tuning is through.  If so, it will be a relief to not have to "show" it anymore and keep it spic and span every day!  Who makes their beds everyday anyway?  Oh...you do?  Whoops.  I used to - before seizure monkey was born.  Now it's a miracle just for me to get out of my bed!  :)

I spoke with my mom today at the hospital and she sounded a bit better.   They did an EEG after her grand mal and all we know is that it was "positive" which the attending Dr. said meant that it did show some kind of abnormality.  It's impossible to get any of her dr's on the phone.  One more run in with the medical system!  You'd think I'd become an expert by now but it's a frustrating as ever!

I'm still waiting the results from my thyroid biopsy.  I got a personal call from the Dr. today (never a good sign, is it?  don't they always have their nurses call and say "it's benign, come back in a year?")  Wouldn'tchaknow I called him back and left a message saying he could call me anytime EXCEPT 2:30-3:30 when Cody has therapy today.  What did the nurse write down?  CALL HER BETWEEN 2:30 - 3:30.  So he did and left another message.  Ugh!  So I called the nurse and said, "look, if it's benign, I'm fine with either you telling me or him leaving it on my machine."  Her answer, "no...he really needs to speak with you personally."  Oh come on!  Is there ANY way in the midst of being pregnant, moving, having Cody at his worst, my mom in the hospital, selling our house, that on top of it ALL.....I could have thyroid cancer?  I just can't imagine that being so.  I choose to believe my luck could not possibly be THAT bad!  I'll find out tomorrow so I'll post and letcha know.  If it is malignant, I'd have to have my thyroid removed during this 2nd trimester - what a nightmare!  The LAST thing I'd want to do is expose the baby to anesthesia, pain meds, etc.  But they "say" it's done a lot and it's fine.  But when you have a Cody in your life, you want to prevent as many pregnancy faux pas as possible "just in case!"  Then I'd have to do some radiation after the baby's born which would mean I couldn't breast feed which would devastate me.  One of my greatest sorrows about Cody is that I couldn't breast feed him because of his reflux and early medical problems.  That was such a loss for me. 

So I'm thinking positive and letting God know that I am just not "up" for surgery at this moment in time!  :)  

Would love your prayers for all these matters - if you haven't worn out your prayer muscles on our behalf yet!

with love, Shawna

Jan. 25

Yahoo!  I do NOT have thyroid cancer!  The Dr. called me today and gave me the good news.  The tumor was benign.  Whew. 

We are continuing negotiations with our buyers - and hopefully will know today or tomorrow if they've signed on the dotted line.  we've agreed on a price and they came over one last time to see the house in daylight. 

That's the news for today!  Yay!

Shawna 

Jan. 27

Okay, how fun is this?  I got the following email this week - what a smile I had!

Hello
My name is also Cody Graves, I'm a 20 year old from Iowa. I am a delivery driver, shoe sales person, and amateur fighter. My roomates and I were googling each other and I saw this website. Then i started to read on about Cody's spasms, and how he was such a strong boy.  And I just wanna say even though I don't know you or him, that I hope he turns out great. I've seen alot of great fighters in life and on T.V. I read about them all the time. And I think that he has to be one of my favorites, and Best wishes to you all. You can write back if you would like, if your not to busy.  I'll pray for him and you.

Sincerely,
Cody J. Graves 

-------------------------------------------------------

Yep - Cody Graves sent Cody Graves an email!  Haha.  I love it.  What a dear fellow.  I knew I picked a good name!  And we didn't name our little guy till almost 10 days after he was born!  We just couldn't decide what name fit him.  So we got to know him a bit and boom - we knew for sure he was a "Cody." 

Speaking of my little angel, he woke up with the worst stuffy/runny nose I've ever seen, poor thing.  And he had massive seizures all night last night...we had to give him a rescue med and everything...and now it makes sense.  He had a cold.  Amazing that even the tiniest upset in his body creates a seizure blow out.  If anyone watched him struggle through a cold with compounded seizures because of it, they'd understand the "please come back another day if you have a cold" sign on our front door!  :) 

The blessing inside this curse of his cold, is that he was conked out most of the day sleeping so we got to do lots of house stuff.  And why is it that no one gets their house in ship shape until they're moving?  Our house has never looked better!  Fresh paint, fresh lightbulbs, flowers, all the little 'fix it's' fixed.  We have our inspection tomorrow!  Yippee!  Course it's not over till it's over...and closing is the first month of March.  Now we have to bust a move and find a house on the Eastside of Seattle that we can move into within 5 weeks.  Not easy to find a great 1 story in that area - super expensive!  But we need a 1 level for Cody.  So things are exciting and grueling at the same time.  I pray I don't get this cold because I need to be a full warp speed all week.  Being pregnant, I can't take much to relieve cold symptoms which is an added negative.

My mom, by the way, is much better.  She's sounding more like herself every day.  She's still in the hospital with no date set for release.  I won't get into the details of their prognosis or long term plans on this site, but please continue to pray for mom and her recovery. 

That's it for now - love to you all!

Shawna

Jan. 30

My poor little sick one.  He was up all last night coughing from his cold.  It's such a different world with a child like Cody.  His head lay on my lap on the bed and he coughed on and off - trying to sleep in between.  But with him, when he's at all awake, he tries to poke at his eyes.  So every few minutes his little hand reaches up to poke and I have to move it away.  A few minutes later, same thing.  Such a bizarre way to spend 8 hours!  

Did you watch "The View' yesterday?  It was an hour devoted to autism.  Fascinating.  I identified with every family.  Cody has SO many autistic like behaviors - altho he's not diagnosed with it.  But they had moms describing how difficult life is with a behaviorally challenged child.  How you can never take your eyes off them.  How hard it is to find child care.  How isolated you feel.  How draining it is.  Cody does so much of what their children do - head banging, biting, eye poking, etc.  His eye contact is good - but sometimes he doesn't even look your way when you're saying his name an inch from his face.  The hyperactivity.  All so tough.  It was nice to hear other moms and identify with them.  As they said, "no one knows what it's like in my home.  you can't imagine the level of stress, sadness, lack of sleep, constant vigilance, research, therapy and more that we do on a daily basis. "  But I understand!  Because I live it too!  I think part of the isolation and lonliness come from no one truly knowing how tough your life is.  You don't want to tell them all the gory details because that's a downer!  And sometimes it can be overwhelming for others to hear.  After watching that hour and these heroic moms...it occurred to me that we have to deal with all that they do -- PLUS seizures.  Wow.  All the trials of autism plus daily horrific seizures, hospital visits, EEG's, etc. 

So that's our lot.  This blog helps me feel not so alone.  I feel I can freely vent and if it gets old...people can choose not to log on for awhile.  :)   You have to blow off the steam somewhere, right?!? 

And, like the moms on that show, I also agree that there are precious moments with our babies that make the bad times melt away.  Today Cody had a rare 10 minutes of resting in my arms without struggling to get away and walk.  He just stared at me and pressed his cheek against mine.  He'd reach up to touch my face and pat my cheeks.  He'd lift his chin to get his much loved butterfly kisses.  Moments like these are extremely rare with him.  So I treasure them all the more.  Those are the moments that I know he's perfect just the way he is.  and they sustain me.

with love, Shawna