Life Starts Now.

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

Friday, December 10, 2010

So, we're off the vent for naps.  It's great news, and I can't for the life of me even pretend to be excited.  Dr. Ricker told me he won't take out Joel's trach until summer.  I had my heart set on March.

I feel like a piece of shit.  I should be happy.  My son's progressing so well.  He's come miles from where he was just 2 months ago.  This week he rolled over twice and ate his food....all of his food without puking.  Big deal for a kid who's had a tube in his throat his entire life.  But the truth is, I'm gasping for air at the thought that we'll have nursing for another 6 months.  That my family room will be my son's bedroom.  That I can't take a nap with him, or go to Chicago in April, or take him to the store by myself without having to have another person in the car.  THAT I CAN'T LEAVE THE HOUSE FOR ANOTHER 6 MONTHS WITHOUT AN EMERGENCY BAG.

It's like when you're running in a race, and you think you can't possibly make it to the finish line, you tell yourself these little 'mental motivations,' like, "just make it to the tree"  "just make it around that corner"  "you're almost there..."  Ok, that's what I've been telling myself for the past 9 months.

I'm feeling so selfish.  I can't see past the tip of my nose.  When is this going to get easier?


  1. Hang in there. I totally understand. When my daughter was going through chemo and fighting for her life I totally lost it when they told me her blocked tear duct may never unblock and she'd have a goopy eye forever. As mom's we can hold it together to handle the big stuff and then the little stuff just knocks us off kilter- I think it's God's way of giving us a release valve.

  2. God will keep pulling you to those next markers. I feel a bit like that with the G tube and his eating, though it is not exactly the same level of frustrations you are describing. Suddenly you are going to be at MB holding Joel post trach removal and you won't believe it. <3 you lots!

  3. What a good way to put it 'mental motivations' to make it to the next milestone or appointment etc. My family just started our journey after my third child was born with a congenital heart defect. He has more holes in his heart then the doctors can even count. He's not even two months old yet and already has pediatricians and cardiologists and on call nurses we can get a hold of anytime if needed. It all seems so insane at times, like it couldnt possibly be MY life. So when you said you have to run a mental race just trying to get to the next tiny personal goal it really hit home for me. So true. Thanks!