Long overdue…

Realizing that it’s been over a month since I’ve written I thought maybe it was time. I have a hard time these days knowing what to say. Before it was clear…test results came so I had something to share, good news, bad news, even no news…it was all something. Now with our lives moving closer and closer towards everyone else’s version of normal I find myself avoiding the release that writing always provided. I’m not sure why…maybe by the end of this post I will have figured it out. Oh yeah…reality…that’s why. Look at that, I didn’t even have to wait til the end. Reality dumbass. The calm after the storm often leads to silence. Just like heavy hurricanes…they come, they reek their havoc, you watch the news and see reporters in raincoats battling the conditions providing updates and then once it passes the “Breaking News” and sense of urgency subsides. A couple of months later and most who tuned in have to be reminded of the details.  The aftermath is left for those on the real front lines. I guess in this case I’m the “victim” and the reporter (p.s. I air-quoted victim to reinforce that I’m not throwing myself a pity party…not my style). I’m still wading my way through each day picking up the emotional debris of the past year…oh shit…yeah a year. Riley will be one next month and before I start crying I’m just going to change the subject right back…we’ll discuss her age at a later date. Day to day remains a greater challenge for me then I think the hospital ever was…so bizarre but from what I’ve read (and by read yes I mean googled) it’s normal. There’s that word again. Yay. My. Favorite. Noun. I’m getting there…I think. I have to be. I take a lot of deep breaths. I’ve been better about scheduling. I cry…often. I do a ridiculous amount of yoga, just ask my shoulders…they’re pissed…while I may be lifting the metaphorical weight off of them their idea of “a break” is not arm balances. Whoops. Honestly though eating shit in the studio feels good. I always feel as though I am stumbling so to have a space, a controlled environment where it’s ok to fall is such a comfort. I can recover quickly and find my balance…one of these days I will successfully carry that intention off the mat. As for now I get 60-90 minutes of hot, sweaty, stinky peace of mind…namaste.

 

I bet you’re all wondering how Riley is doing, huh? This shit isn’t titled “Life of Alissa”. She is wonderful. Big. Not just like “oh yeah she’s growing up and getting big” I mean…Girl. Is. BIG. We call her the bulldozer or tubs or the beast. If you’ve seen her in person you understand. She is still the happiest baby you have ever heard of, except when she sees food out of reach then she lets out this ridiculous ear-piercing squeal that does not cease until said food is in hand. It’s intense. It’s hilarious and a bit painful if you’re too close. She is standing and seriously considering taking steps…watch out world once she does. Health wise she is doing amazing. Her little body has started producing B-cells which is so far beyond fantastic…while I could go into the science of it and all the jargon as to why I won’t. Just trust me…it’s great news. Long story short…if those lil B- cells she’s got floating around decide to start functioning we should be able to stop the IVIG infusions all together. Hooray. Our nightmare of a diagnosis is headed towards the best case scenario section and we couldn’t be more grateful. She did have an infusion today at Kaiser Santa Clara…it was so nice to be able to do it locally again (though we of course missed our UCSF pals). All went smooth as usual. She is so easy. When we got there I of course forgot her insurance card in the car so sent Chris for it and then as I started checking in the woman informed me that I was in the wrong place…”This is the General Pediatric department, you need to be down the hall in Pediatric Oncology”…as she uttered those words the heads of all in line snapped towards Riley. Yeah folks…I’m your worst nightmare…enjoy your routine check-up 😉 Maybe one day I’ll get used to the way people look at us when they hear…probably not…I’m still not used to seeing other families in our position or ones similar. I am however getting used to Riley being Riley. Just Riley. We go out…ok ok not often but nonetheless we do. We just got back from Target…that’s a big step for us, I think she’s only gone to a store like that once or twice before. Today during her infusion we scored a space with a crib for her to play in…she was so excited to be back in a hospital crib, girl feels so at home. It was in front of a window which thrilled her beyond belief…she jabbered as passerby’s rushed down the walkway. One girl…probably somewhere around 17-19 was standing outside unknowingly playing on her phone and happened to look up as Riley was watching her. Riley waved and jumped up and down flashing her larger than life grin…the rush of shear joy slightly shadowed by sadness that spread across that girls face was priceless.  She couldn’t help but smile and wave back…for about 5 minutes they made faces at each other. The young girl ultimately failed at holding back the tears and wiped her eyes all while still grinning at Riley. The girls mom soon joined her on the sidewalk and clasped her hands over her heart breaking into a smile at the sight of Riley dancing away as her IV cords flailed in the air. It was the single most precious moment between two complete strangers I have ever witnessed. That little Riley…she sure knows how to touch a life. Damn, I’m lucky to be her Mom.

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Riley’s new friend

 

 

Speaking of being her Mom…she is up from her nap and cracking up in alone her crib which quite possibly means she successfully completed her newest trick of “self diaper removal”. Shit. Hopefully not literally but you get the jist…I gotta go. 😉 Thanks for sticking with us and loving my little lady through sickness and health. xoxo

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