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Showing posts from June, 2020

Day +79: inTENSE

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I awoke this morning with a joyous heart, knowing that Ramón is waking up in a regular hospital room; he escaped the ICU! He required some ventilator support the past few weeks to rest his lungs, but he built his way back up to breathing on his own. Ramón successfully completed a 24-hour breathing trial yesterday, so he got the all-clear to move back to the bone marrow transplant floor. Hooray!

Early this morning, I woke up and noticed it was approaching 5:00 a.m. Well aware that it’s a Sunday, it took me back to the night we nearly lost Ramón. Though it feels somewhat naïve now, I remember the announcement that they got his pulse back. At that moment in time, I thought the scariest part was over. I thought, ‘Whew, he’s going to be okay,’ not knowing what his body might have endured while he was almost lifeless. Now, ten weeks have passed since I heard Ramón’s voice or laugh, and I never could have imagined things would unfold this way.

Lately I struggle with what tense to use when t…

Day +76: Mashed potatoes (and a side of rambling)

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This morning, while walking the dogs, my mom turned to me and asked, “Did I tell you about the dream where I was feeding Ramón mashed potatoes? He loved them.” Without hesitation, I responded, “Aww, that makes me happy.” Now, reflecting on our exchange, it’s interesting that my first response was one of joy. If Ramón was four months old, the conversation might have been commonplace, but he’s not. Several months ago, my mom’s dream would have been hilarious, yet now it’s entirely appropriate. Circumstances have redefined my waking dreams, too, and I’m trying – and mostly succeeding – to accept the changes with an open mind.

It got me thinking about the benefits of open-mindedness. Being open-minded not only creates the opportunity for change and acceptance, but it also frees us from our ego-driven need to be all-knowing. I’ll share an example from my own adolescence. Growing up with cystic fibrosis, I carried my share of sadness because my health generated feelings of isolation and fe…

Day +67: Smoother waters

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It’s day +67 since Ramón’s transplant. Given that the first 100 days are critical, it’s relieving to know we’re two-thirds of the way through the hard part of the transplant process. We received test results today confirming that Ramón has no evidence of disease, and his sister’s cells are still 100% running the show. These are important milestones, of course, but even the good news is tampered by the brain injury caveat.

My phone often suggests that I glance back at photos, and I’ve been taking the bait lately. In many ways, it’s nice to reflect on the good times, remembering a life that was much less complex. However, it’s also difficult because life looks so dramatically different now that grief can quickly overtake the nostalgia. Today I was reminded of this picture of Ramón and our dearly departed Phoenix at the beach two years ago.


It got me thinking about the ocean and how surprising it can be. Sometimes, you’re casually standing knee-deep, waiting for another wave to rhythmica…

Day +57: Setting hope

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Saturday into Sunday has become my toughest time of the week. It makes me reflect on "the night" when Ramón was feeling indescribably rough, culminating in the early morning loss of airway and subsequent cardiac arrest. It serves as a marker of how long it's been, and we're now officially in week 8. In the early days, this never entered my mind as a possibility. I was somewhat naively but optimistically expecting a call at any hour, letting me know Ramón was awake and asking about me.

As each day passes, I try to remain hopeful. On Wednesday the neurologist reminded me that "it's still early," which is an interesting way to describe the longest, most overwhelming days of my life. But she's right; we knew from the beginning that time would play the biggest role in Ramón's recovery. Sometimes I view the passage of time as one day closer, and other times it's one day deeper into heartache. On April 23, five days in, a dear friend told me, &quo…

Day +56: Caray on

Another day, another Atlanta Braves surprise! Tonight we received this message from announcer Chip Caray aka Harry Caray III. I am so grateful for all the people that have stepped up to help make us smile. For now, I'm smiling solo, but I remain hopeful that I'll relive all of this with Ramón when he awakens from his very lengthy slumber.

Sunday will mark seven weeks since his cardiac arrest; that's seven weeks without one of his hugs, laughs, or awful jokes that he repeats because he thinks I didn't hear him when I certainly did. Ugh, I miss it all. Thank you to Chip and my friend, Uren, for making hospital day 63 a hit! ("Do you get it? A hit?" -Something Ramón would say)

Day +55: Holy Snit

Alright, folks. Things are escalating! Today we got this incredibly kind video from Atlanta Braves Manager Brian Snitker. I'll admit this week has been a tough one; we're working to determine where Ramón will go next to give him the best chance for neuro recovery, and we've run into many obstacles.

Though I've shed countless tears of sadness this week, my hope was to regroup and shift back into a perspective of gratitude. Last night's email from Hank Aaron (so fun to say) helped get me started, and Snit's video has given me the momentum to keep going. Gratitude, I'm home and hope to stay for a while!

Day +54: Keep swinging

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You know when you’re just staring at the computer screen, deciding what to say to Hank Aaron? Do you not know that feeling? Because I do! Tonight, Hammerin’ Hank took the time to email us after becoming aware of our story. I was born a Braves fan, and Ramón grew up watching the games on TBS, despite living nowhere near Atlanta. Together we’ve gone to many games, made trips to Florida for spring training, and spent a good portion of last season cheering from the hospital following Ramón’s leukemia diagnosis.
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After receiving Hank’s email, I read it multiple times to make sure I was seeing correctly. “You are not going to believe who emailed us,” I excitedly told Ramón tonight – day 61 of his current hospitalization and day 89 this year. Though he’s still unresponsive, I read him Hank’s words of encouragement, hoping they’ll find the sweet spot that leads to progress.
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I love this quote from Hank: "My motto was always to keep swinging. Whether I was in a slump or feeling badly o…