Friday, February 22, 2013

Oakley can shake it!

Don't actually have time for a real post. We've been going nonstop since we got back. Here are some pics. I'll update for reals soon!

Thursday, February 7, 2013

100 days

We made it. We get to go back to Boise. It's nothing like we had pictured it, but it'll work for now.
A lot can happen in 100 days. 6 teeth, hair loss and hair growth, nearing death, and reaching for life. Oakley will be 300 days old in 6 more days. That means over a third of his life has been post-transplant.  It seems weird the way our time is moving.  It seems like I am missing out on his entire baby phase and that he's growing faster than a morning glory on one hand, and then it's as if time is standing still on the other. It's like we're still waiting for the moment that beung a family becomes reality. I still rarely feel like I'm a mom. Yes, I gave birth, and I fight for him every single day, but I'm scared that we missed out in too much of the bonding time that is so crucial to new moms. You know how brand new moms have those nights where they are exhausted, because the baby cries nonstop unless mom is holding them? I've never had one of those. What I have had is sleepless nights because Oakley has decided not to breathe, or because a nurse is visibly terrified of Oakley and his medical needs...but those don't seem like bonding moments to me. Warriors aren't maternal, even if they're fighting for you. That's more what I feel like I've become. I am a mercenary,  ready to strike at a moment's notice. I am a soldier, but my training didn't prepare me. I am a sniper, but I ended up in the thick of battle, not perched above with my sights on the enemy. It's hard to tell who the enemy is from this vantage. I feel blindsided by "allies" and those who were the most reluctant in delivering excellent care have turned into exceptional resources.
I hope so desperately that Boise is the haven I remember. I hope that my mental exhaustion hasn't utopianised it too much. I know we are not headed back to our beloved NICU that became our family and home; but I yearn for the familiarity of the hospital that saved our lives. I beg for the comfort of my region's nourishment and flavor. I need a glass of wine and some mindless gossip with a girlfriend to distract my brain from all the medical terminology that has become my lexicon.

When I wander too far from the paths my feet know
It seems my brain goes into overload
I long for the place where my body leads me home
Where memory drives my steps to my humble abode.
They say "home is where the heart is," and it rings a little true
But I challenge you to find solace when your GPS is all that guides you
Compass roses are exciting, but not very homey
And though I have my loved ones, I still feel so lonely
I say instead that home is where your mind can be at ease
Where your feet guide your body while your mind dreams above the trees

Monday, February 4, 2013

Swing Low

We're coming home!!! Oakley and I (Sam) fly to Boise on Thursday,  February 7th. Trevor will be toting the car and our stuff with help from his stepdad Rob, and his wife Jenn. We are sad to be leaving some of our extended family that we have gotten to see, and sad to leave IKEA,  but we are SO excited for everything else! Oakley is doing great with his trach,  and they will switch it out on Monday. When they do the swap,  I'll be allowed to hold him again! I didn't get to on my birthday,  but I will be making up for it!
Oakley cut his 5th tooth on my birthday,  and he's working on his 6th. He has had some more allergic reactions, so we hope the allergist can see him before we leave to help us figure out what's causing them. The nutritionist measured him yesterday,  and he is 72.5 cm tall now, he has grown 10 cm since we got to Seattle! We're still working on chubbing him up, but at least he's growing!