Life Starts Now.

Living each day to the fullest, because we know first-hand just how fragile life can be.

Monday, April 9, 2012

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/ 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.

Thursday, April 5, 2012

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!

Monday, April 2, 2012

These are a few of my favorite people.

I miss them.  They are my sisters.


Can I just take a quick 30 seconds out of my life to scream something on paper?  Ok, thanks.

WHAT THE HELL???????????!!!!!!!!!!  HERNIA? SURGERY???? AHHHH!!!!!!!!!!!

Thank you.  Joel's surgery is TBA.  The original plan was to do the surgery locally, and I think I've changed my mind.  I think we need to be sticking with Children's hospitals, because they are designed for children. (Most obvious statement ever.)  I want anesthesia to be used to having complicated children like Joel.  Nurses who are used to advocates such as myself. And surgeons who are performing on little bodies, daily.  SO, our local appointment is tomorrow and I still haven't rescheduled it, but I'm getting there. 

I'm frustrated with this.  How can it be luck of the child has terrible luck....but it's not luck.  To me, in my beliefs, this is from satan.  Just as his CHD, and all of the other crap that has been thrown in our path.  But that's not what is frustrating me; because that is satan's do awful things.  I'm frustrated that God isn't doing anything to stop it.  God is good.  All the time.  I know that.  And I also know that he is allowing Joel to be in pain for a reason.  To go through this for a reason.  I just wish this wasn't His will.  For me to have to watch my son be wheeled back into another OR.  I don't want to learn anything from that.  I want to be ignorant parents, like every other parent on the block.  I don't want to be stuck in a multi-bed surg-floor room, with parents getting simple surgeries for their healthy children...while they tell me how 'the world has handed them the shitty stick...' because really, it's everything in me to not unload Joel's history....or tell them some of the stories of Joel's buddies....who didn't make it out of a hospital room.

I'm frustrated, and I'm sad.  I don't like seeing my son this way.  :(  I can't wait until this is all over, & I can remember it like a dream.