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
What an amazing post and such a wonderful surprise to get to hug you yesterday! I'm so happy to see Oakley's big smile through the glass and I'm glad that you all seem to have a little light shining down on you despite everything. We miss you in the NICU but he's a big boy and I hope your stay in PICU goes well too. Please come say hi ANYTIME and thank you for the opportunity to talk to my little man. About the bonding and not feeling like a mom, everything you are going through really is bigger than those initial sleepless nights and small milestones you feel you are missing. I went through that and didn't feel bonded with my daughter until a month ago (at 14 months). Your experience of motherhood is challenging, frightful, full of tears and laughter, small achievments, and setbacks. Guess what? Overall, that IS what the "infant stage" really is for anyone. You are there even if you don't feel it. When you hold him next week and when he goes home, you will have the unique advantage of never taking any part of your family for granted. You are the strongest and most loving family I know. Congrats on being back!
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