Goodbye, Golden Retriever

I'm sitting up to my computer, tears running by the bucket full, wads of kleenex, and a near-empty box of truffles.  HAHA.  What a sight to see.

We had planned on making a trip to Tacoma tomorrow morning.  Our cardiologist is moving out of state, and really, I think the plan was probably for us to say good bye.  We've reached the 'once-a-year' stage, and Joel won't have any lasting heart issues.  It's easier for everyone for us to pick someone closer.  We got a call first thing this morning to let us know that our insurance denied our visit.  So we're not going.

Now, when I make trips to Tacoma, I usually try to fit as many visits in as possible.  I see friends, family, hospital staff that we've grown close to.  This trip included a visit with our favorite intensivist, who happens to be moving to Grand Rapids, MI.  He invested his heart into the care and recovery of my son through our hospital stay.  He sat me down during the wee hours of the morning and told me to prepare for my son passing that day.  He watched, as we waited, and watched him slowly recover.  I saw his enthusiasm in our victories.  Still to this day, he keeps track of Joel's progress.  It means the world to us.

I didn't think much of the cancelled heart appointment....at first.  Until I realized who we'd be missing.  And now, here I am...a mess, seeing a chapter in our life closing.  We have no more obligations in Washington. 

Because I have to say it before I explode.

We have these surgeries.  We've (thankfully) combined them into one sedation time for this purpose: More warm weather time to wean Joel off his feeding tube by next Fall.  Also, because we are DONE (did you hear me???  I said DONE!) with surgeries...and this may literally be the last trip to the OR.  The surgery has been scheduled for May 24th, which is next Thursday.  Ten days and counting. 

I've said it from the beginning that I want Joel to be done with his feeding tube by Fall.  I think he's mentally ready.  We're in a place as a family to support him with the resources and "tricks" that we've learned. 

I am scared that we won't make our goal.
I am worried that we won't make it, and I'll be stuck doing feeding tube stuff through another winter.
I feel guilt for the line above this one.
I wonder if I'm pushing him too hard.
I feel more guilt...because this is something God knows is weighing on my heart....and I should have more faith that he can put this together.  I should have big faith.

We've even landed the surgeries in May, like I'd hoped, so we can have a straight 3-4 months of solid planning, and eating, and scheduled mealtimes.  Everything is lined up just how I'd hoped up until now.  And I'm scared to death.  I'm so scared.  There is no fearless here.

Up on the Hill

We had appointments last week in Portland.  Two pre-ops, and a follow up for Joel's eye surgery.  On the first morning up at OHSU, I managed to lock my keys in my car, and then after being rerouted to another building by the staff, forgot where I was parked.....long story short, I had to meander through 3 parking garages with a tired toddler and a heavy diaper bag before the security guard could get me back into my car.  As I finally buckled a sleeping Joel into his car seat, I sat down and cried.  I called Adam and told him how much I hated this campus.  And I meant every word.

We met up with some friends of mine, had dinner, talked, drank a little wine, and our kids played together AMAZINGLY. Slept well, and woke up the next morning with a new start.  Drove back up the hill to the same campus that had defeated me the day before, and felt the same heartache.

Don't get me wrong, I know I've been spoiled with Mary Bridge.  I love it there.  They were my family away from home, and I mean that.  Even the valet guy got one of our Christmas cards.  They KNEW us, and it felt great to be apart of a 'community' within the hospital.  We fit in there.

But that wasn't it.  It wasn't until I drove back down the hill and remembered this, that I knew my hatred was much deeper rooted.

I have memories here.  An old boyfriend went to school here.  Not just any boyfriend...THE boyfriend.  The one I swore as a teenager I was going to marry.  The one my parents feared and hated.  The one who was pivotal in my destructive years.  He was the spin in my tornado.  I can remember YEARS of thinking of this very hill as a desired attraction...'If only I could get to that hill, we could make it work....'  He occupied six years inside of my heart.

And I'm not going to get into details that I don't want to relive, because to be honest, if you knew about my past, you'd probably crap your pants.  It's shocking.  So, I'll leave it at: I was heartbroken.  By a boy who is now a dentist.  And it led to a landslide of retaliation and addiction.

Obviously I'm not heartbroken today.  I've met and married the man God intended for me to be with.  We have kids and a life that is incredibly hard, and incredibly rewarding,... but Adam and I have had to work IMMENSELY hard to keep things together at times, and I can almost always derive my unhealthy behaviors in our tough times back to when I learned them first.  From the boy on the hill.  People learn things when they're under emotional stress.  I learned bad habits from that relationship, and without guilting myself to death (which I do,) there's a mess to clean up years later.  I made a mess in the love-part of my brain, and time hasn't really healed that....God had to.

It's no surprise that looking back stirs up sadness.  It always does with me.  But I really want for OHSU to not remind me of the actions I regret.  I know God didn't intend for my husband to have to deal with my baggage from past relationships, but as it is, he does.  Thankfully he's patient enough to stand by my side while I work through my 'exfoliating.'

You know, I'm gonna have to go back up there in a few weeks for Joel's next surgeries.  I'm going to bite the bullet, and NOT cry this time, and be that strong mom that I was in Tacoma.  If you're reading this, and you pray, be thinking of us.  Joel will be getting his stoma closure and hernia fixed.  I'll be looking out of a window, over a beautiful city.

Just a song that gets me through. 

Like Clockwork.

It's the funniest thing how God works in our family.  It is. 

So, on the way back from Tacoma, Adam and I took advantage of only having one kid in the backseat....and got a few heart-to-hearts with minor interruption.  I felt it in his tone, and in mine.  Something wasn't working.  We went over the topics.  His workload.  Mine.  The kids.  Joel.  His school.  Our stress.  Karate.  The housing situation.  This is what we do....go over things.  See what we can eliminate.  And, there was nothing.  Everything causing us stress had to stay, at least for now.  So we prayed for peace.  Just peace.  Because, to be honest, things haven't been to our liking for awhile.  And that's just part of life.  Things are tough when kids are little, and sleep is hard to find (SOOO HARD. *yawn*)

A couple of days later, Adam comes home from being on the road with his boss.  Who offered him an extra $1,500.00/month....so that I could stay home and take care of the kids.  He didn't just offer him money.  He sacrificed his paycheck so that Adam and I could survive without me working.  How many bosses do you know that are willing to give up their monthly paycheck? 

I am at a loss for words.  The kids need me home so badly that it punches me in the gut when I leave for work.  Their needs aren't being met with me gone.  Adam's on the phone all day working, or emailing.  Joel's getting fed, but not to the volume that he could be consuming.  And there's this looming cloud that just disappeared......Joel can now continue weaning his feeding tube during this Spring/Summer's surgeries. 

I'm seriously going to miss working 3-4 days a week.  I loved my job.  And I can't put into words how hard it was to tell my boss that the most unpopular position at the store was available....once again.  I felt like I was letting her down, but she was understanding, and loving,....just as she always is.  I'll still be working events from time to time, but my main priority is at home.  Like it should be.

Jamie's Heart Foundation Gala 2012

We made it to our 2nd Jamie's Heart Dinner on March 24th.  It was so great to see our friends again!!  We stayed with Lydia and Ralph and they watched (and spoiled) Mia when we went to the dinner.  Here are a couple of pics from the evening. I even worked up the courage to give the evening toast in front of 140 people! 

I know I've posted about Jamie's Heart Foundation before, and I'll post about it again.  I love this organization.  As tragic as Jamie's passing was for the Hannahs, they've turned their sorrows into an incredible blessing for other heart families.  They helped our family financially when we were in the ICU with Joel, and that allowed our family to focus on our son's healing instead of our bills.  I will forever work to help and support them extend this same help to other families.  We love you, Tim and Corina!

These are a few of my favorite people.

I miss them.  They are my sisters.