2 Years + Leo Update

We’ve been pretty busy since Leo’s surgery Tuesday morning.  Thank you so much for all the kind words and well wishes and prayers and thoughts and everything.  It’s so incredibly nice to know our boy is held close…means the world.  Surgery went well with zero hiccups and Leo is doing good.  He’s still struggling with pain and nausea and a high heart rate, but the kid just had open heart surgery 72+ hours ago, so it’s to be expected.  His lips, fingers and toes are pink and while I weirdly miss his blueness, I’m so thrilled with that pink.

I’ve been doing little updates on Instagram since it’s much easier and quicker to do than an entire blog post so you can always check in there if you’d like. 🙂  Josh Kelley went home yesterday and we already miss him big time.  Sometimes I trick myself into thinking I’ll get tons of stuff done in the hospital…I brought 3 books with me…ha…and then I remember, nope!  There is always something to do and a sweet Leo to cuddle or comfort and oh how those crappy couches in the rooms ARE NOT BEDS!!!!!!  I have started this blog post approximately 27 times, but maybe the 28th time’s the charm.

Leo is spending most of his time with a cold rag on his head and his mouth hovering over a pink puke bucket.  He has gotten up to walk a little and we’ve taken a few rides down the the play room where he just asks to go back to bed.  We have watched Mandarin Elmo, Peppa Pig and Boss Baby 324 times in the past 3 days.  He used to be the best medicine taker and he has now been stripped of his title. 🙂  His favorite hospital things are “my daddy”, his blankie and me.  His favorite activities are pretending to give me a shot with the play doctors kit, painting and begging not to have to walk.  You can tell when he is officially done because he retreats under his blankie and stays.  And every doctor and nurse loves him because he’s so damn cute.

I’ve found being back at Mott has been harder on my mind, heart and body than I anticipated.  I am exhausted and not just because I’m up a lot helping Leo with things through out the night, but because it is physically hard holding space for my sadness & grief surrounding Everett and my happiness & relief surrounding how well Leo is doing so far.  It’s the ultimate emotional balancing and managing act and truthfully, I don’t think I’m doing the best job, but I’m also okay with that.  This is excruciatingly hard and it should be.  This is the place where we last held our precious 3-year-old son alive and then held his body close as he left this earth.  This is heavy heavy stuff and there are zero good words for any of it.  Nothing makes this okay.

On Leo’s first set of rounds after surgery one of Everett’s doctors was working.  We locked eyes and then I could not stop crying.  I stood there like a full on crazy person crying my eyes out.  They talked about how well Leo was doing and how he’d likely be ready for the regular floor soon and instantly I felt anger.  Like everyone back away from the grieving mother now because she is about to lose her shit, anger.  It’s quite bizarre feeling angry when one of your kiddos is doing well because you’re stuck on why your other kiddo couldn’t have done well too. Why does it appear healing is coming for Leo when death came for Everett?!?  Why do parents have to walk out of hospitals empty handed?!?!  Why do some kiddos like sweet Toby have to fight for so long?!?!  It makes zero sense and no one can explain this complexity away.  It’s just hard.  Period.  And sometimes you just want to throw a chair through a window.

Yesterday marked 2 years since Everett died and it was a sad day, but we did our best.  We hung up rainbows in Leo’s room and he immediately wanted to talk about his “Shuai Shuai”.  We shared lots of Insomnia Cookies with Everett’s PICU team.  When I dropped off the cookies I saw one of Everett’s nurses that preformed compressions on him for so long.  He was with his patient, but it took all I had not to bear hug that man.  I watched him fight so hard for our boy for 45 minutes and my gratitude will never diminish.  For dinner I ate free pizza on a rainbow Fiesta the Donkey paper plate I brought from home just for today.  And I walked by Everett’s transition room…even creepily touched the door…where we all said our goodbyes and held his little body last. We miss him more than words could ever capture.

Mott’s staff has been amazing.  Everett is noted clearly in Leo’s chart and everyone has been so kind.  This hospital is sacred to us.  They have been so sensitive to how difficult it has been to come back and we’re deeply grateful for every big & small recognition the staff has given us.  From locating Leo’s PICU room purposefully far away from Everett’s, to doctors and nurses deliberately bringing Everett up, to asking to see photos, it’s just been nice to be in a place where Everett’s name has been brought up everyday by someone else.  This is not the case in the reality of every day life.  When Everett & Leo’s surgeon was talking about Everett and said “it feels like just yesterday” he validated so much in me that others view as off or weird or crazy. He validated that it may have been 2 years since Everett died, but it truly feels like yesterday. He chose love & compassion & empathy and said our sweet boys name.  And that was really nice to hear.

I’ve found myself studying each face I pass in halls and on elevators looking to see if I discover they have just lost their child.  I remember wondering with every person we encountered as we prepared to leave Mott without Everett, if they some how knew our child had died.  Did they someone know…could they read the anguish on our faces or in our body language?!?!  And so I catch myself staring and trying to read all the clues and it makes me feel a little crazy, but it also makes me feel aware to the possibility of someone else’s deepest pain.

So Leo is doing well and we are beyond grateful, but it’s also weirdly hard.  And I don’t think I have many other words to make sense of it.  Sometimes things are just this big mix of weird and hard and good and angry and beautiful and sad.  Everyday Leo moves a little closer to the door and home and everyday we all move one day closer to our FuShuai.

9 Comments

  1. I also now search the faces of other women at my OB’s office at every appointment. Always looking for another mom who may have just heard devastating news about her baby. Someone in need of love and a hug.

  2. Barbcole says:

    Thank you for the update! I was praying and checking but knew you had lots to do taking care of Leo. Everett made a HUGE impact and will never be forgotten! Leo has the rainbow blanket, how special! I can’t imagine how torn you are there at the hospital and all your feelings and emotions. Hugs.

  3. Sending much love and strength to all of you.

  4. Lynda & Dave Hall says:

    We are so thankful to hear that Leo is doing well after his surgery! Praying for his continued healing. He looks amazing following such an ordeal. Love his pillow, blankie and room decor. You are the perfect interior designer! Sending our love and prayers to Leo and his precious family!

  5. It’s probably something you wouldn’t want to hear, but maybe you had to go through that experience with Everett to save Leo. Your boys are so precious. Much love to you and your beautiful ones.

    • I hope you can read this with all the grace and sincerity I have in saying it, but if you have to preface a comment to a parent who’s child has died with “It’s probably something you wouldn’t want to hear…” then you probably shouldn’t share that thought. 🙂 There is no explaining or reasoning our 3-year-old dying and we in no way “saved” Leo. I believe Leo would have been our son…no matter what…Everett living or dying. We are not saviors…we’re parents. Leo is brilliant and amazing and pure magic and we are so undeserving of the honor and privilege it is to parent all 7 of our children. All the love and grace.

  6. Tammy akers says:

    Sending tons of love, prayers, hugs and hope for a speedy recovery for Leo and a floodgate of fond memories of Everett’s time with you!!! I can’t imagine how hard your heart hurts but I know that you are so loved and that God has big plans for Leo in this world!!! ❤️❤️❤️

  7. Oh, Laura. The enormity of the emotions of being back there for another heart surgery on the anniversary of Everett’s death is unfathomable for any of us.
    It wasn’t ever supposed to end that way for Everett. He didn’t get the ending that he deserved and neither did the rest of you. I’m angry on your behalf about Everett and so thrilled that Leo’s story is taking a different turn. Everett deserves the same story, and I desperately wish with you that he had gotten it. There is no “reason” that would ever make a mother feel better about the death of her child, because there is no reason. It happened. And it just plain shouldn’t have and is so effing unfair.

  8. Brigette says:

    Look at those pink lips – WoW! I think really, really wanting to throw a chair out the window being in the same place that Everett died two years ago while Leo is doing great is the perfect response. How can the human brain try and make sense of it, understand it, or anything else about it. In your day to day life a lot of people shy away from mentioning Everett and here is a place that embraces saying his name and talking about him. Will keep praying for Leo’s recovery and rest for your weary body (and all the Kelley’s in Nashville missing two of their peeps).

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