To hear that "Cody changed my life" somehow makes this furnace seem a bit more bearable.  So thank you so much for loving us.  If you're reading this, it shows you care.  THANK YOU.

shawna

August 7, 2007

Hi all - nothing much has changed.  Still battling gruesome seizures every day.  Cody had 8 before 9am struck today.  That's eight while I had the two boys alone.  Poor Casey had to sit and cry for an hour while I attended to Cody who was seizing every 15 minutes.  What a nightmare.  Whoops - gotta go - Casey just woke up.

love to all and thanks for praying!

Shawna

August 8, 2007

Friends.  Carol came over today to clean my house.  She brought her mop and bucket.  She cleaned our shower.  She mopped my hardwoods.  She vacumed my carpets.  She washed down Cody's toys.  How humbling to have someone clean your own home in front of you.  How blessed I am.  The kicker?  Her first words were "I can't wait to do this for you!"  I lamely stuttered, "can I pay you for this?" feeling guilty.  Her answer - "nope - you'd rob me of my Heavenly reward."  LOVE her.

Darlene called from Starbucks wanting to bring me something so of course, I said "a cookie!"  She showed up with a cookie, lots of warm company, and lots of compassion given she also has an autistic son.

Carolyn came over Monday and she'll come again tomorrow from 5:30pm - 7pm because she knows that those are some of the hours of the day that I have the boys alone.    Cody triple loves Carolyn and gives her hugs like he gives no one else.  She has such a gentle way with him and innately knows exactly how to play with him in just the right way.

I won't complain on this post.  I just can't.  I'm overwhelmed with people who demonstrate Christ's love to me in the flesh.  Whatever is going wrong in life, and oh there's a lot, I can be nothing but grateful in the face of the compassion and service that comes my way.

love, Shawna

August 14, 2007

Hi there.  I've been so swamped I haven't made an entry in awhile.  Seizures, seizures, seizures.  I SO wish I had something else (or something new) to write.  Seizures define our lives...our days...our moods...our hopes.  We meet with Cody's neuro at Children's Hospital Thursday to discuss what to do next.  I fear a new drug is on the horizon with new side effects.  I really thought Trileptol was helping - and it truly seemed to be - till Casey was born and Cody seemed to take a turn.  I'm sure that the Dr. will say that the stress of a new baby could absolutely trigger a wave of seizures.  But what do you do with that info?  Casey's not going anywhere.  I am having the nanny come at 7:30am to try to make the morning less stressful for Cody - now he's not waking up to Casey crying and chaos.  Today he had such a peaceful morning - he woke up to mommy (Veronica had Casey) and we snuggled, played, laughed...I made him breakfast and fed him...we rocked and sang songs.  He had me all to himself (as has been the case all week) and yet BOOM - seizure upon seizure upon seizure before 9am.  I just don't know what else to do for him.  And this nanny goes back to college in 2 weeks so that will be even more change for him.  I've hired back his prior nanny to just do mornings with us - an hour and a half from 7-8:30 to try to keep cody's mornings calm (he seems to have seizures upon awakening most often which is why I'm so focused on the a.m.)  We really can't afford anyone more than that morning shift so I may have the boys all by myself the rest of the day.  YIKES!  But in Sept. Cody starts back at school with therapy every morning for 2 hours so at least we'll be occupied.

I had a friend over who teaches a grief class at my church.  I can't attend so she and I are going thru it one on one.  One more blessing - a friend who will hump it 45 minutes to my house every week to help me thru this process.  Today we discussed how life is so full of loss.  She's lost her husband and her son has endured leukemia.  I adore her...so real...so fiercly devoted.  Another friend's delivering lasagna tomorrow.  Another is coming over to clean my house tomorrow.  Today's friend reminded me that those people are all demonstrating Christ's love for me and my family - God has not abandoned me.  As much as I don't understand (and feel angry about) God's choosing not to heal Cody - I can't deny that He IS present in my life.  He is making Himself known.  His fingerprints are everywhere.  I still struggle so with anger toward Him.  My friend reminded me that's okay...anger or tears...they're both the same.  Some people cry, some get mad...it's all just a response to being in pain.  For me, it's easier to feel anger than cry.  But it's all honest emotion and God can take it.  She reminded me to let Him know how angry I am...rather than to detach from Him altogether.  So that's my goal this week - to go to Him in prayer honestly - and to wrestle this out with Him.  I tend to just not pray when I'm mad.  But I'm encouraged to share my anger with the Lord and made it a dialouge rather than a monolouge.  He won't crumble.  And it will keep my anger from turning into bitterness and creating a large abyss between me and God.  I'll letcha know what He has to say in return.  :)   I have a feeling He'll win the arguement.......................

with love, Shawna

August 17, 2007

We met with Cody's neuro yesterday.  He still suggests a trip to Cleaveland & Detroit for a muscle biopsy and a PET scan.  Ugh.  I can't imagine anything more stressful than travelling with Cody and a newborn.  Calgon, take me away!

It was quite the dismal appt.  I told him Cody's never been worse than right now.  He turns blue up to 7 times a day - is making himself throw up constantly - the list goes on and on.  Life is nearly unmanageable with him.  The neuro said that our options are (and always have been) 1) new meds (with the warning that at this point, there is less than 2% chance of any med affecting his seizures).  2) keto diet (been there, done that).  3) surgery (that is why the new PET scan - to see if a focal point has arisen - it is an extreme long shot.)  4) vagus nerve stimulator (a surgical prodedure inserts this device inside the upper body and it somehow affects the way the brain fires (or mis-fires.)  The odds of the v.n.s. working are very very low.

So at this point, we will try a new med while we plan these trips to the mid-west.  The muscle biopsy is a surgical procedure where they remove about a walnut sized piece of muscle from his leg and test it for mitochondrial disorder.  Doing it in Cleveland gives them the "most fresh" piece of meat.  Gross.  The fresher the sample, the more things you can test for.  So the PET scan and muscle biopsy are our last ditch efforts at trying to find out a reason for these horrible seizures.  The odds of these two procedures telling us anything that will help is very very slim.  Yet we will go - looking for the needle in the haystack.

The new drug is lamictal.  We'll have to deal with it's attending side effects as we always do.  Sigh.

Not much to smile about today.  The Dr. said the most likely scenario is having to deal with these seizures for life.  I wanted to slap him - even tho it's not his fault.  Don't shoot the messenger, I guess.

Meantime, every time i sit down to nurse the baby, I get to watch Cody either have a seizure, try to masturbate, make himself throw-up, poke his eye out, or bite himself.  Each thing requires me setting the nursing baby aside and running to stop Cody from whichever negative behavior he's engaging in.  Nursing the baby just may not be an option if this continues.  Cody does one of these things every few minutes.

So there you go - life is nuts.  We are nuts.  Are you depressed yet?  :)

Where's God in all this?  Not sure.  Struggling with that.  As usual.  Yet in the midst of the struggle I acknowledge that He's still on the throne.  He's still in charge.  That doesn't change.  I'm praying He'll show me how to have a relationship with Him and trust Him despite my frustration.  I'll letcha know how that goes.  :)

Isn't it so much easier to be angry than to "feel" everything there is to feel?  Anger at least feels concrete...you can hang onto it.  Pain, on the other hand, just feels....painful.  Yet as I learned in Psychology class at Pacific Lutheran University,  "Anger is a secondary emotion - it always is covering up the primary emotion which is always pain."  So there ya go.  Anger masks pain.  But they're mostly one and the same.  My friend Kerry pointed out to me that even tho I feel extremely guilty about being mad at God - it's really just pain - and that's okay.  God knows it's pain.  I just choose to express it as anger cuz it feels better to yell than to cry.  That made me feel less guilty.  Thanks, Kerry!

love, Shawna

August 18, 2007

Today we were down to 4 smaller seizures.  Whew.  One day's reprieve.  And we took advantage of it.  Don entered a 5K race in Woodinville and pushed Cody in the stroller the whole time!  It was fun to watch.  Cody's first race!  Casey and I cheered from the sidelines.  See photo below.  Hope you had a good saturday.  Love,  Shawna

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

August 21, 2007

Can you believe it's almost September?  Time FLIES! We had a pretty weird weekend - Cody woke up Sunday throwing up for 3 hours - no other symptoms - just some kind of gatro attack.  One more example of how kids with neurological problems have trouble regulating all their body systems.  He's better now - just kind of listless.  We are preparing to start his new drug - darn it.  From what I read, it's pretty mild on the side effects - but Cody's such a wild card ya never know.  We're hoping for the best.

I'm working on our trip to Detroit - bless Dr. Chugani's heart!  Whenever I email him, he gets back to me the same day!  HOW does someone that busy manage that?  Someday I hope one of my sons becomes a neurologist so he can treat people as respectfully and wonderfully as Dr. Chugani!  What a blessing he is!  We're going to Detroit in October for a PET scan using glucose, plus an experimental PET scan using something called "flumazenile" which shows how the brain functions in some other way.  Chugani also requires an overnight video EEG so he can compare that to the PET results.  Long trip.  Expensive - our airfares alone will be about $450 each.  We stay at the Ronald McDonald house which is a home right on the hospital campus where families can stay basically for free.  I've said this before, but when I was a reporter (many moons ago) I did stories every year on out local Ronald McDonald house.  I'd visit and highlight one of the children's families staying there - usually a child with cancer.  I remember those stories so well - each time I'd leave there so grateful I wasn't staying there myself.  Now lo and behold - I am!  Having a sick child is so incredibly expensive - especially when you resort to out of town trips.  It's so nice to have accomodations that save you money.  I'm NOT looking foward to this trip - but I am looking forward to hearing what Dr. C. has to say about Cody's current condition.  He's pretty much the biggest expert on childhood seizure disorders there is - Cody saw him when he was 10 months old.  So off we'll go.......one more pilgrimmage to try to find out what's making our son so sick.  It's not easy to plan 2 trips (the other to Cleaveland) with two little boys that are so high maintenance!  I feel pretty scattered these days -but what's new?!?  :)

I'm still looking for a part time nanny from 2-6pm Monday - Friday if you know anyone wonderful who lives close to the Redmond area.  Start date would be the week of labor day.

That's it for now - love to all!

Shawna

August 23, 2007

Well we had 3 days of very minimal small seizures - and I dared to think he'd taken a turn for the better.  But today Cody's had 2 huge seizures + 3 medium ones and it's not even 10am yet.

Every night I either rock him to sleep or lay with him as he falls asleep in bed...and every night (without exception) for the last 2 years I have cried as I watch him drift off.  It's so routine and 'normal' for me, that I don't really even think about it.  But last night it occured to me that not many other parents probably have a nightly ritual of crying over their children.  Not to be melodramatic...it isn't a big drama...Cody has no idea I do it.  But the sight of him looking so innocent as his eyelids grow heavy - and the way he wraps his little arms around my neck for one last hug before he falls asleep - literally breaks my heart.  It's the innocence that kills me.  The purity.  He is so dear...so sweet...and has such a rough road.  When he was a baby (back when he was normal) - I used to sing the same song to him every night when I put him to bed.  It's the song "Miracle" and the first words are:  "you're my life's one miracle.  Everything I've done that's good.  And I'm overwhelmed with happiness, so blessed to hold you close.  The one that I love most.  Though the future has so much for you in store..............who could ever love you more?"

I started to sing it to him last night and once again, couldn't spit the words out.  When I get to:  "though the future has so much for you in store" I have to stop because I get too choked up.  What DOES the future have in store for Cody?  I had no idea when I sang those words to him as a baby that he'd be robbed of so much that I thought he'd have - a wife of his own - or a little baby to rock to sleep.  No driver's license.  No prom date.  The list goes on and on.  So much that the future DOESN'T have in store for Cody.  So much to grieve.  So much to have fresh tears for every night.  Granted, we are still holding out for that miracle that will restore our little boy.  But each seizure chips away at that hope.  Each seizure is a fresh reminder that "chances are" he'll be severely retarded for life.  That's what I grapple with every night when I put him to bed.  That's where the tears begin.

Well, that was depressing.  Sorry.  And there's always perspective that slaps me in the face.  For instance, one of the moms who has written to me from this site is in the hospital for the 5th week with her little boy.  She wrote from the hospital:

"sorry i haven't answered back but when i wrote to you we just got 
back from the hospital and we were there for 2 wks and that weekend
we got home, he was doing well until sunday when he started to
have  more seizures so on that monday we returned to the hospital
and we  have been here since, so total of 5 wks now in hospital to
try to  control some of his seizures but not much luck.  His
neurologist believes it is a  metabolic disorder and most possible
mythocondrial, so lets see what  happens with that, he already had
his 2 MRI and they saw brain  changes, possible due to degeneration,
so we have to just see with time how he continues, and as you say
pray and try not to be so angry  with this situation and god,
because it is very hard to see him every  day with out improvements.
No body nows how hard all these is unless you are going through it.
I had to return to work last wk so that hasn't helped and here 
sleeping at the hospital doesn't help either, but what can we do, 
only keep taking care of our babies and enjoy the moments we have 
with them.  Take care and you are doing such a wonderful job."

Just when you get to feeling good and sorry for yourself, you hear from someone who has it worse - stuck in a hospital - for 5 weeks!  I can't imagine that - hospitals get REALLY old REALLY fast.  She lives in Cincinnati but I wish she were closer - I'd at least come by to give her a hug and a home cooked meal.  Life is SO hard.  And SO fragile.

That's all I have to say for now - kind of dismal, sorry.  But just keeping it real.

with love, Shawna

August 24, 2007

Hi there - sorry for the dismal blog yesterday.  Some days are just too much, ya know?  I heard from another mom of an i.s. child who reads this blog and she said she runs a bath every night and cries in it.  Kind of the same as me - needing a tearful outlet for the day's stresses.  Amazing how moms of kids with seizures make it through a day.  If you're reading this and your child has seizures (and judging from all the emails I get, there are many of you reading this right now) - my hat is off to you.  Your tears are not lost on God.  There's a scripture that says He has a count of all our tears.  That comforts me.

Speaking of comfort, my dear friend came over again yesterday - we are going through a "grief" class one on one since I can't make it to the Monday night class she leads.  She's awesome enough to come to my house to do the study with me face to face.  What a blessing she is.  It was a weepy day for me - watching way too many seizures and feeling way too much stress.  She let me cry and tell her how overwhelmed I am.  Then we processed it together.  There's something so healing about someone who will just listen and sit with you in your pain.  She doesn't try to solve it.  She just listens, understands, and hugs.  Then together - we try to remember what God says about all this in His Word.  We agreed that seeing our child suffer makes it awfully hard to trust God and feel His love for us.  We also agreed that the suffering may not end.  So what do you do?  Being mad gets you nowhere.  Trying to figure it out and understand "why" gets you nowhere.  So we read what the Bible says to do:

"Be still and know that I am God"

"Cast all your cares upon Him for He cares for you"

"do not worry"

"trust in the Lord with all your heart and lean not on your own understanding.  In all your ways acknowledge Him and He will make your paths straight"

"And we know that in all things God works for the good of those who love him, who have been called according to his purpose. "

In the face of those truths above, I decided my only option is to "get over it" and start to believe on the Truth instead of believing my emotions.  Easier said than done!!!!  But I've literally been wallowing in sadness, anger, etc. for 2.5 years now.  It's gotten me NOWHERE.  Except miserable.  I need to suspend my need to "figure out" this equation.  I can't just love God "when the seizures end" - they may never end.  I have to love God DURING the seizures.  Wow.  Hard.  I guess what I need to do is literally STOP thinking and start memorizing the above scriptures and believe them.  Period.  God promises abundant life and joy.  I am SO sick and tired of feeling miserable.  There is abundant life and joy to be had IN THE MIDST of our trials - it's in the Bible.  It's a promise.  I want that.  I won't get it by listening to my emotions.  and the only way to get rid of my emotions is to meditate on the Truth of His Word.  By doing that, I believe a supernatural exchange will occur where God will give me peace and joy despite my pain....in my pain...through my pain.  But I've been so stuck just feeling and reeling from the pain, I haven't been able to do much else.  But I am going to try to apply these scriptures to my heart condition and wait for change to occur.  I will look for the ways God is working this trial for good.  I will not worry (or try not to).  And I will trust that He will even make THESE paths straight for me.  Scary...it's much easier to just be hacked off.  But as my friend told me, you have to get over it.  It's not your business why you are going through this and other people have easy lives.  Get over it.  Get beyond it.  Rise above these circumstances and believe what God says even if you don't believe it!  :)

She wasn't being hard on me - she's lived this.  She validates the pain and the anger.  Anger is okay......for a time.  But not forever.  Detachment from the Lord is okay for a time...........but not forever.  Eventually you just become a bitter person.  And I've decided my time is now.  I've spent my due time being hacked and feeling abandoned by God.  And I am worse off than when I started.  I will always feel pain as long as my child is suffering....but I know there is more to life than just this shattering pain.  Abundance is available.  Joy is available.  Maybe not "happiness"...but deep joy...the kind that transcends circumstance.  So I'm going to take a huge leap of faith here and trust that if I apply these scriptures to my heart and try to let go of (or suspend) my anger and fear...that there will be a Heavenly pay-off...in the form of peace and joy...because the Word says in Him we have abundant life.  Okay................................so here we go!

Okay, this is a must see:  http://www.youtube.com/watch?v=9oxTy7KIAaA

Trust me.  It's England's version of American Idol.  You HAVE to see this audition!

:)

Shawna

August 28, 2007

The poem below was sent to me by an online friend whose son has infantile spasms.  I have no idea who wrote it but I adore it.  Hope you like it too.

Well my search continues for a part time nanny - they are hard to find!  I've advertised in a few places but haven't had many responses.  Until I find someone my friends and family are good enough to pitch in, bless their hearts!   I'm looking for someone to work 2p-6p monday - friday so I can take a breath and try to get on top of things instead of below things!  :)

Cody continues to have lots of seizures despite his new medicine.  We are going to Detroit the last week in September for 5 days - ugh.  Casey is still nursing full time - it's been a chore but we are plowing through!  He's such a little love - LOVES people - is smiling up a storm - and wants to be cuddled all day long.

I must head to bed as sleep has not been my friend lately.  3 day weekend coming up - we love those!  more time with daddy!!  In fact Don and Cody are racing Monday in either a 10K or 5K (i'm not even sure what that means....) but Casey and I will be on the sidelines at 8:15 am as they depart from the Columbia Winery near our home!  It's an early morning!  I can't believe all those runners rise and shine that early - all with smiles on and chugging smart water - thin and in shape and happy to be alive.  kind of sickening.  hahaha.  and there i am on the sidelines - unshowered - half asleep - with a crying baby.  the antithesis of those happy skinny water chugging runners.  darn them!  and my husband's one of them!  :-0

Cody LOVES the jogger stroller and he and dad go out jogging every night almost.  It's cute to see them at these races - Don has to start from the very back with all the moms & babies in strollers.  All the runners get to take off first - those with strollers get stuck in the back.  But it doesn't take long before Don breaks thru the pack and is up with the runners.  Last race he was 5th in his age division - among people who did NOT have 40 pound Cody in a stroller!  My husband...always the competitor.  I'm sure he's plotting a way to start at the front this time.  It's pretty cute seeing he and cody bound over the finish line - Cody chewing on his binkie with rosy red cheeks - clapping his hands and kicking his feet.  Leave it to my husband to find a way to connect with Cody through sports...pretty cool stuff!

with love, Shawna

When you look at me,
You will measure me
..by my awareness
..by my response
..by my age,
..by my development
And you will shake your head
and find me lacking.

But, for me, you are measuring
With the wrong cup.
For I have one possession
Which brims and overflows
Beyond all others.

I have my parents' love.

This cup they give me holds also their
..agony and helplessness
..waiting and hoping
..tears and pain
..loneliness and fear.

But in the end, all these are swallowed up
in the depth of their love
Which now, in each same moment,
Both lets me go
And will never let me go.

So measure me, if you must...
But measure me, too, with my cup
And you will find me
Full.

August 31, 2007

"I Do Talk To You"

I know you can’t hear me....but I do talk to you.

And I hear everything you say to me too.

I hear when you laugh, when I do something funny.

I hear you yell "Hooray" when I try so hard.

I hear you tell others how you’d never trade me for the world even with all the trials I came with.

I hear you thank God for what a blessing you have been given.

I hear you encourage me when I can almost do it.

I hear you cry, too, when it gets a little harder

And when you ask God "Why?!" your baby.

And I know you know I understand somehow.

And you know I listen when you talk to me too.

But, I want you to know, mom...........

I do talk to you.