Over the past 6 months we have been challenged more times than I can even count, just when we seem to have a handle on the reality of our situation something comes up to test us once again. I swear life is going “ok ok, you handled that with grace but try THIS!” I have been in a constant state of awareness, remaining deeply conscious at all times about where my emotions are and making sure to keep them in check and adjust my attitude, perspective and sometimes simply the level of wine in my glass to ensure my sweet little brain does not explode. It’s exhausting, I’m tired. However, I’ve gotten good at it. I am able to take terrible news in with one breath and on the exhale be at peace with it. Yesterday we got some wonderful news…I’ll go ahead and save you the excitement by telling you it was retracted a fews hours later. I was told that Riley’s latest function results had come back at 68% and 80%…OMG, WHAT?! That’s like normal human status, like no more isolation and maybe even roll around in the dirt a little bit…ok probably not the dirt part but hey I was excited. Like I said…a retraction later followed, the labs were misinterpretted by the person I asked for the results and her function levels had actually gone down from 22% to 18%. Well. Shit. Remember that roller-coaster?…turns out it didn’t stop in San Francisco, it just keeps on twisting and turning in the comfort of our very own home. That highly tested practice of diverting my perspective to reflect one of positivity quickly followed. I read the retraction email in the same exact spot I was standing in Riley’s room where I had been when I got that first call back in August, standing over her crib staring at her, literally same exact spot. Immediate deja vu. I felt myself drink that last sip of air as I read “18%” and then BAM…breathless, tight chest, uh-oh here comes the lip quiver…yup eye’s welling up…brain starting with the “why me, why her, why us?”, ruh-roh total meltdown to ensue in 5,4,3,2…deep breath. Another one. Keep it together. Take a minute, really think about it. Check in with those emotions. How bad is this? Ok. It’s not that bad. Had I been told that her function had dropped right off the bat I wouldn’t have been excited by any means but I was prepared for that. I knew it would fluctuate. It’s not the end of the world. I’ve dealt with situations way worse than the misread of a result and while no it did not feel good I was in control of how “not good” it was going to make me feel. I took a moment…part of me wanted to just lose my shit, to be really frustrated and angry, to start bawling and scream my lungs out into a pillow. Another deep breath. I told that part of me to get it’s act together. I really didn’t want to spend the next hour being upset, it’s messy, makes my head hurt, does no favors for my face and turns out…wouldn’t change a thing. Still staring at Riley, who by the way had been grinning and cooing at me all the while I just smiled. I wanted to play with my daughter. I wanted to laugh and enjoy every second because she’s here. She’s mine…all 100% of her 18% functioning immune system was smiling back at me and picking her up was a much better option. Minutes later we were giggling away in the playroom and I emailed her social worker with this photo and a “thanks for the heads up and p.s.  it didn’t ruin Riley’s day” message.

photo-4

So that’s the latest on little Miss…she continues to keep things interesting and makes sure that not even for a minute do I get too comfortable. Situations like these are great reminders as to how strong yet fragile she really is. No matter how careful I am or how good I think things are going, one phone call can still change everything. Remain positive but be prepared…always. 18% is still a good number, it means we get to stay put…no hospital but no public either. I’ll take it. We take her to her first clinic appointment tomorrow for labs and to check in with the BMT team. Fingers crossed that none of her other counts decide to take a dive in the wrong direction and that we get a “keep up the good (yet slow) work.” from the docs.

 

Thank you again to everyone for the continued support. I am still blown away by the generosity of friends and strangers alike. Thank you. Thank you. Thank you.

One thought on “

  1. Congratulations on getting that beautiful baby girl home!
    That smiling face speaks of all the love that’s been showered on her–she’s wonderful!

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