Riley Update

I want to write…I’ve been staring at my screen here for almost two hours…blank curser flashing blue reminding me that I have no clue how to feel about any of this. Every ounce of me is flooded…with fear, with love, with exhaustion, with gratitude, with anxiety, with prospective, with questions I want answers to and then answers I want retracted. Flooded. Thatta girl…I managed to write a few grammatically incorrect sentences but then zoned out on the fact that the blue curser flashing is synced up with the beeping of the machines in our new room.

Just when I find myself thinking none of this can possibly be real I realize that this is all that is real. This is our reality. And that reality is that those machines beeping aren’t just telling me that an IV infusion has completed or that her line is occluded or that something needs to be flushed. Those are the machines I’m accustom to…they’re familiar sounds, sounds that I learned to tune out 3 years ago in order to sleep. But it’s not 3 years ago Toto.

img_0086

Riley was intubated on Saturday. These beeps…the current beeps sounding off with every flash of my cursor are coming from a machine that is keeping our daughter breathing.

img_0087

There’s not a soul reading this that wouldn’t argue the depths of Rileys strength…that being said…at some point the true show of strength is knowing when you can no longer fight. She knew. The terror was real…more real than I’ll ever put into words but the relief was real too. We were warned that when she came off of the sedation she would likely thrash, struggle and attempt to pull at the tubes…I knew she wouldn’t. I think. Or maybe I just knew I couldn’t bare that and so didn’t give it the option in my mind. Either way she didn’t thrash…it was so clear that the solace we felt in seeing her chest rise and fall steadily once the tube was placed was felt in her as well. She needed the help…she was given the help…she accepted the help.

She is still fighting…still working hard…so hard that we’re having to actively tailor her treatment to force her to rest. (shocker I know). We’re closer to some of the “whys” still figuring out many of the “what nexts” and clear headed enough to know that there’s no room for “what ifs” but for now none of that matters. All that matters is her breath.

Processed with VSCO with 2 preset

She will get through this but she needs every ounce of support…via cords, via humans, via prayers, via sleep, via ventilators, via positivity, via whatever it is you feel moved to do…light a candle, share her story or just take a really big deep fucking breath and be grateful for every bit of it.

I was right…I love her more today and I’ll love her more tomorrow. Breathe Riley Breathe.

** Special thanks and insane amounts of gratitude to my dear friend Meg Perotti for spending an afternoon letting me unload and sneaking in captures of our harsh reality in such a beautiful way.

7 thoughts on “Riley Update

  1. I am so sorry you and your family are going through this again. Keep writing and taking care of yourself. ❀

  2. Princess Riley stay strong mama fight like a girl and know tbat i am praying for you. Sending hugs love and kisses your way.

  3. Sending my thoughts and prayers. Can’t believe how strong all of you are. I love ❀️ the illustrations from your cousin of the girls. Hope Presley is doing well too. This is far more a reality to her than before. πŸ€—

    Sent from my iPhone

    >

  4. Continuous positive thoughts, love and prayersπŸ’œπŸ’œπŸ’œπŸ’œπŸ’—I have followed Rileys story from the beginning….. thank you for the updates, I know they are hard to do: thank you for allowing me into your worldπŸ˜ŠπŸ’œ

  5. I have prayed without ceasing, Reily has been lifted up
    And I am Faithful . Prayers have not only been heard.
    They have been Answered.
    BREATHE Riley BREATHE πŸ™πŸ»β€οΈβœ

  6. Dear Alissa, My heart aches for you and your family! Miss Riley Jane has shown incredible strength and will power through this awful illness, too! She has YOU for her Champion after all.
    Holding you close in my heart and thoughts,
    Barbara

  7. I have been where you are with our own little fighter HG…hearing you write about those sounds and beeps hits way to close to home and takes me back to that place…I don’t know you but I understand what you are going through…the raw reality is consuming and unimaginable…sending you both every ounce of strength I have available…

    πŸ’œ

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s