Below Original Blog Post from www.lifeofrileyjane.com May 2017
I lay in bed this morning listening to Riley playing with her princess dolls beside me…she is always playing with those dolls. She narrates an entire little world filled with weddings and galas and “banquids” (she means banquet but her mispronunciation is too adorable to correct.) I should feel relief, I should feel overjoyed. I should feel everything except what I do. I feel frozen. I’m afraid to move because she’ll know I’m awake and want me to play along. I should. I should be able to. I should want to. I can’t…she can’t know I’m awake…the carefree language of pretend she is speaking I simply cannot fake my way through.
She’s home. She’s okay. She’s happy.
I’m a million miles away. I’m suffocating. I’m terrified.
What the actual f*&$? My mind starts attempting to calm me down while shitting on each thought before it’s completed. I have everything I wanted. (for now – but what if?…) Everything is okay. (is IT?! – but what if?…) She’s home. (yeah…today – but what if?…) GAHHH. I’m glued to the bed by what-ifs. I want to be asleep, I want to just sleep through this part. This part I haven’t mastered. The come down. The “back to normal”. I can’t sleep…I went to bed at 8…I was already feeling my body being taken over. I thought I could escape it with sleep. What a nice sentiment. That would have had to involve actually sleeping…instead I shot awake gasping for air every hour or so. I’m so tired but unable to rest, 10 hours of terrorized slumber and just like that it’s the next day.
My body feels like the vessel of a snow globe…if I lay here still enough maybe these feelings will all just settle. But I’m vibrating…I’m trembling with anxiety and fear and gratitude and exhaustion. I can see every flake of twisted emotion shaking within the hard shell that is my globe. But if I get up it will be everywhere. The tiny flecks of discomfort will fly up…they won’t just remain in the pit of my stomach where they reside now and I know that. They will twist and turn disrupting everything. With every step they’ll shift, with every request to play they’ll scatter, with every inhale I’ll pull them to my center and then upon exhale they’ll blast out with renewed force.
I couldn’t even put my feet on the floor until I had given myself permission to leave. I knew that I couldn’t be in the house, I couldn’t pass an ounce of my messy energy onto the girls. I put on shoes and just headed out to walk. I wore spandex thinking I might decide to spin or bend my way out of this. I took a book thinking I could catapult my mind into a different world for a bit. I took a credit card thinking at some point some sort of sustenance may help. I decided not to take an allergy pill thinking that if I was lucky the discomfort of itchy eyes and a stopped up nose would take my mind off of the anxiety radiating through my body. Twisted, right? I know. I had no plan. Nothing. I walked aimlessly for hours…I thought about getting brunch but didn’t actually want food so “brunch” would’ve meant a Bloody Mary but I’m pretty sure if you’re alone in spandex occupying a table not eating and ordering vodka it’s not called brunch…it’s called drinking alone. Which let me clarify I have ZERO problem with…in all reality I wish it would’ve sounded good…it just didn’t. I ended up with an ice coffee at one point and a smoothie at another. I followed that with going home to cleaning and laundry and then I packed a bag for the hospital. No we are not going back. But since all the “ugh I wish I had’s…” are fresh in my mind I thought it might be comforting to just pack it up and then put it away in the closet. I’ve now got the essentials for an unexpected-hospital-overnight stowed away. If you’re prepared for disaster they’re less likely to come right?
And then there’s Riley…she’s spent her day as though she’s never endured a moment of trauma ever…ever. She’s been out back taking advantage of the 80 degree weather sprinting in an out of the sprinklers and a blow up pool with her sister. I couldn’t even watch. They were giggling and singing and shouting and squealing with delight …all of the happiest sounds you could imagine. I couldn’t bare to listen. I actually had to leave again. I took myself somewhere where I could be alone to write this…to write about how tortured I feel because that feels better than watching my daughter happily splash. God, that’s twisted. How is that possible? How is any of this possible? How can I be so present and capable during the worst moments and completely frozen during the best? I know it’s fleeting. I know I’ll recover but I hadn’t even gotten my footing from the last go round and this just has completely knocked me back to I don’t even know…what comes before square 1? Zero. Right. I’m at zero.
When I try to pin point why I’m such a damn mess…I’ve got nothing…I mean it was 3 days and in compared to last time it’s just laughable how FINE she really was. I mean she was fine so quickly because we knew what to do this time but STILL. It all just happened so fast. So unexpectedly. So randomly. She had an MRI last week and the results were good. She had IVIG Monday and did great…she even got a princess dress, it was a damn good day. She had a follow up BMT appointment Tuesday and it was the first one since admission that we just kind of sat and talked about how great she was doing…there was nothing to report. Wednesday I worked, she played, we went to bed and then I woke up with the overwhelming urge to touch her. You know what transpired after that…well no I guess you really don’t, but you have the cliff notes…fever, ER, ambulance, UCSF. On top of the “emergency mode come down” I honestly can’t say I know how to process the “move-forward” on this one. She was just in so much danger and then very quickly not (thanks steroids). It wasn’t a slow build up of symptoms, there were no signs, I wasn’t on higher alert. I just happened to wake up and have a gut feeling. What if next time I don’t? What if next time I’m not there? What if I never stop spinning and asking “what if”? And then there’s her…there’s Riley bounding from chaos to calm with no hesitation…she’s not asking “what if?”…she’s enjoying what is. All I know is this…when I grow up I want to be like Riley…and if she grows up she’s going to run the world.
And here’s me telling the story I didn’t share then…the one that is important now.
It’ll make you smile…promise.
