I'm happy to report that Don and I just returned from an overnight getaway!  We went to La Conner yesterday at about 4pm and got back today at 7pm!  My part time helper Shoshannah and her friend Lauren stayed with Cody which was a total gift.  Shosh has given Cody diastat before and is well trained with all his medical needs.  Unfortunately he had a bunch of big seizures while we were gone, but Don and I decided ahead of time that we absolutely positively needed to get away together and that we would trust that Cody would be okay without us.  It was hard - I requested a call every time he had a big seizure so I got a call at midnight, 7am, 3pm and 6pm.  Hard to relax when you know that's going on.  But the reality is, Cody has seizures all the time.  And we've stayed home for 3 years - literally.  The divorce rate for couples with a special needs child is 80% - and we are determined to not be one of those statistics.  And I have to be honest, we haven't even slept in the same bed for 3 years.  We are literally two ships that pass in the night most days.  Weekends are spent trading off with the boys while the other does the bare basics - laundry, groceries, bills, baths, exercising, church, cleaning the house, dispensing meds, managing Cody's seizures, trying to take naps to make up for all the lost sleep during the week....there just aren't times when we "hang out" as a family let alone as a couple.  Until this weekend, we allowed that to be the case, anyway.  But this weekend we made a pact that unless Cody was going to the E.R., we would stay gone.  We made sure to be 1 hour away so if we had to do an E.R. trip, we'd be close by.  And we're both so happy we made that investment in our marriage.

It was so wonderful to re-connect with my husband.  We stayed in a cute Inn on Main Street.  We got there before dinner and strolled the boulevard and looked in the quaint shops.  We ate steak and pasta on the deck of a Steakhouse restaurant and watched the boats go by.  We toasted each other in honor of our 6th anniversary on Aug. 10th.  We took a walk on the waterfront then wound up at a pub where we shot a few games of pool.  Then we went to the Inn and watched cable TV - yay!  Olympics, movies, we feasted on the clear picture (our home TV has no cable and is mostly snow because we're too cheap to fix it.)  Went to bed at midnight and didn't rise till 9:30am!  9.5 hours of sleep - only interrupted once by the 7am "Cody's had a big seizure" phone call.  We strolled to have breakfast at the hotel - read the paper - watched more cable - showered and checked out.  Then we strolled the boulevard some more and even bought some Christmas presents!  Then we hit some organic produce farms on the way out of town.  And to top it off, we saw "Tropic Thunder" before returning home.  It was, in a word, BLISS.  Don commented on the drive home, "you know what one of best things was for me these 2 days?  I was never in a hurry!"  I so identified.  We are always rushing - always in a panic - always living in and with chaos.  This was so relaxing.  It was weird because I remember thinking, "24 hours - why bother?  I'll never be able to relax in that short time."  But Don and I were both shocked at how amazingly relaxing it was - and how it felt much longer than 1 day away.  And when we got home the only casualty was a skinned knee for Casey which was hardly noticable.  Both boys flew into our arms and lo and behold - Cody survived having seizures without me there.  Go figure.

The downside is that it is always expensive to get away - and we are highly aware of the opportunity cost.  We could be spending that money on extra therapies for Cody, putting it in his trust fund, paying off his medical bills.  So I always struggle with the luxury of trips.  I researched the best place to say for the least amount of money - and we only ate 1 meal and snacked on grocery bought food the rest of the time.  So we tried to be frugal and didn't splurge - yet it still adds up - especially when you're paying someone to watch your children for 24 hours.  Yet I honestly feel it was worth it.  We want to try to it at least every few months - but we'll see how that works out.  On the drive home, after feeling somewhat guilty for leaving the boys and spending money on the getaway, I remembered what one of Cody's former therapists told me.  She has a daughter with seizures who is now in her 20's.  And this woman nagged me all the time to be sure I was investing time in my marriage.  I remember thinking, "when?  we barely sleep much less go on "dates" and such.  Then one day she said, "I know it's hard to make time to be a couple.  But I speak as someone who didn't make the time - and I let my entire focus go to my sick child - and wound up divorced."  Ouch.  She went on to say that the very best gift we could give the boys is a healthy marriage that stays together.  That kind of gave me permission to make it a priority to go away with Don.  And I'm so glad we did. 

In a parallel universe, where I had lots of time on my hands, it would be my sole ministry to relieve parents of special needs children - for an overnight getaway.  Don and I would swoop in and watch their kids and handle any crisis so they could have time as a couple.  It would save the cost of childcare which relieves a lot of the burden of trying to get out of town.  It's a fantasy - maybe it will come true some day.  I hope so.  I know so many couples who are on the frayed edge of sanity and who never get to even go out to dinner much less go out of town together. 

In other news, we have made a final decision regarding the VNS therapy.  After a week full of horrible seizures, it is abundantely clear that this drug is not providing enough seizure control...and we cannot raise it much because of the manic side effects.  So we are electing to go ahead with the surgery on Aug. 29th even though it is killing us.  I've researched for hours the pros & cons.  I've talked with at least 25 families who have done the VNS and heard the good, the bad, and the inconclusive.  Many families say it did nothing for the seizures.  But many families said it did tons to help seizures.  It's a crap shoot.  Most said the surgery itself wasn't too bad - that the kids are back to themselves the next day.  The muscle biopsy will add a bit more recovery time in terms of body pain.  I wish I could say I feel great about the decision - but I don't.  I can't even think about the "cutting" part of it.  I'm trying to attach myself to the idea that it's really the only option left.  Without the VNS, we will be left with what we have.  We've tried 15 drugs.  Clobazam has done the most but we are at the maximum dose that he can tolerate and he's had a week of bad seizures.  We've tried every diet.  We've flown across the country (3 times) to see if brain surgery is an option and it isn't.  So if we didn't do the VNS we would be saying that the fear of surgery and the attending hassles and side effects of the VNS outweighs the possibility that Cody just may be one of the 50% it helps.  Coming home and seeing the "blood freckles" all over his face from broken capillaries from seizing - made it easier to live with our decision. 

But still we're afraid.  Afraid of complications during or after surgery.  Sick about the idea of a device being "implanted" in our son's chest.  Even more sick thinking of a surgen winding wires around the nerves that go into his brain.  Sick again about the idea of a chunk of his muscle being removed and analyzed.   As I told Don, there's just no "good" side of things.  If we don't do the surgery we have these horrid big seizures to live with.  If we do the surgery, we have our son cut up and living with a permanent device in his chest.  None of the options are good.  That's why they call everything "palliative" at this point.  The Dr's pretty much say nothing will remove his seizures completely - they have proven to be just too ingrained.  So anything that "works" will be palliative - or "to improve his and our quality of life" by reducing the seizures - not eliminating them.  It stinks. 

Of course, if you've read this blog for long you know we believe in a big God - a God who is the real Healer - not medicine.  And we know and cling to the fact that Cody won't have 1 more seizure than the Lord allows.  We know God could heal him in a split second - in the blink of an eye.  And we petition for that daily - hourly.  It hasn't happened yet but we hold on to the faith and hope that it will.  In the meantime, we make the best choices we can and move forward.  We pray for strength on the surgery day and after.  We ultimately place Cody into the hands of the One who created Him.  He is not ours.  He is a gift to us and we accept the condition of the body he was given.  It is a tenuous proposition...."accepting" but still hoping/praying/begging for healing.  You have to accept or you'll be forever stuck.  But in the accepting you don't want to infer that it's "okay" or that we are any less desperate for complete recovery in every way.  Living with this is messy, ugly, always changing, and always painful.  It's full of questions...living without answers....hoping but bracing for the worst.  It is nothing I'd wish on my worst enemy.  Yet it's our "normal" so we do what we can to press on.  And as we learned this weekend, there is joy to be had still.  We can still smile, laugh, relax.  It's okay.  For so long I felt guilty every having fun - because my son was sick!  How could I be light hearted knowing how he was suffering!  But I'm growing.  Don and I sat on that deck in the sun eating steak and key lime pie for dessert - and we allowed ourselves to just "be."  We reminisced about our honeymoon in Hawaii - back when life was easy.  We laughed when I reminded him that our thank you cards for our wedding gifts had the words "And they lived happily ever after" in calligraphy over a photo of us emerging from the church with bubbles floating around us as we got into the limosine.  What is "happily ever after" anyway?  Is this it?  It's sure not what we thought it would be.  But it is....what it is.  So it's up to us to find the "happy."  We think "joy" is more appropriate because "happy" seems more fleeting - more attached to comfort and ease.  But joy is deeper.  Joy can be had in the deepest trial.  For us, this past weekend, there was joy.  It was a sunny day - we were holding hands - we got to sleep uninterrupted by seizures.  Joy.  Joy.  Joy.  We soaked it up and are grateful for it.

with love,

Shawna