Once you’ve lived amongst the darkness that is pediatric illness, experienced what it’s like to know that losing your child is a potential possibility, witnessed the struggles of the families you share walls with ..how do you go back? How do you navigate the days? It’s like the innocence you had before is gone, it was ripped away the day you got the call. And maybe that innocence was simply ignorance…but they say it’s bliss. In so many ways they’re right. The tug at your heart strings when hospital commercials run is different now…it’s familiar…you even look for faces you might recognize. So now what? Be. Normal. Yeah…ok. I actually feel like an asshole on days that are normal…seriously I catch myself in moments of contentment and drop my head and think “ugh you’re an ass”…why you ask? Because I know full well what someone else is going through during my times of ease. I know at any given moment someone is living their version of my nightmare. I was there once. I remember clutching Riley while the miracle poison that is chemotherapy infused into her…staring out the windows watching people leisurely stroll the streets and wondering “how the hell are they walking around as if nothing is wrong?!” HELLO! Do you have any idea what’s happening to my baby? Look up…she’s up here, inside this gray building fighting for her life and there you go strolling to get a freakin’ half-caff latte. Prick. I felt that way. That’s terrible. It was such a strange feeling to be so close to normal civilization yet be so cast away in uncharted territory.
Month after month going back and forth from the hospital caring for a physically weak newborn to the emotionally strained 3 year old awaiting me back in the real world. Both mine. Both drained. Now…both mine…both home…both sleeping soundly. Life’s not so bad. It’s amazing in fact. In the grand scheme of all we’ve overcome…this is bliss. Everyday day I know that, I do, I promise…but my emotions often argue with the things my mind know to be true. The angry butterfly colony that has taken up residence in my stomach is constantly warning me not to get too comfortable. My fuzzy memory reminds me that even if I slept 8 hours I’m tired because there is no rest for the weary. And my heart…my heart that had to build a hard exterior for months to survive it’s surroundings is now begging me to be patient with it. This person I’m carrying around inside of me…this bat shit crazy version of myself that can’t go to the mall to buy shoes without crying at the site of a stroller may need a break. I need to figure out what I need. Damn…that’s a needy sentence. I’m annoying…I’m annoyed with my weakness when it hits. It’s silly to me. Embarrassing even…like…seriously lady you’re crying? Right now…not then? Yes…I have those conversations with myself often. Yesterday after I wrote I felt better, there was some sort of release, I was relieved at times but nervous because uh-oh…I let my guard down. Whoops. I’m sure it’s the moment many have waited for, not in a mean sense at all I just think it’s to be expected and I was the only one who couldn’t see it. There should have been a pool going…“When’s Alissa gunna lose her shit?” y’all could’ve made some money for tuning in for so long.
Shortly after posting on the blog yesterday I received this text from a fellow SCID mom “Thank you so incredibly much for the tears streaming down my face. You spoke my words. So many days I start to crumble and try to compose myself. It’s so surreal and at times I feel stupid for getting all sappy. Love you lady so much. So glad you got it all out in the blog.” Worth it. All the embarrasment, all the fear, all the wonder as to should I share this? Worth it. By days end I’d heard from 3 other SCID Moms offering thanks, support and surprise surprise…wine. You ladies are all amazing, thank you for reminding me I’m not alone and not (too) crazy. 😉 xoxo
And then there’s my sweet sweet happy little Riley…reaching out as if to say…”Grab on Mommy…I got you”.