Archives for July 2019

Hi!  Leo has been quite busy here in Michigan healing and here we are on day 11.  He’s doing well, but still rocking some chest tubes and pain and no talk of home just yet.  Every day I sit in awe of his strength and resilience and how he is living out his brave-hearted lion name.  And of course, everyone loves Leo and thinks he’s the cutest thing around town.  He’s so loved and cared for.

He’s been battling nausea and vomiting and dehydration and figuring out medications and a high heart rate and chest tubes.  For days and days he wasn’t himself at all and rightly so.  His team started making us leave the floor 6 days post-op because sweet boy was feeling crummy physically and emotionally.  He was down and sad and missing home.  We loaded him and all his tubes and chords and IVs and pink puke bucket up and headed downstairs to look around.  We ventured into the gift shop and found an Elmo balloon and some “cannies” aka candies.  He wouldn’t eat the candy, but instead just held it tight in his hand.  When the cashier blew up his balloon it was the first real smile we’d seen since surgery.  The ultimate pick-me-up.  Straight joy!

So every day since we’ve ventured off the floor and added a balloon to his ever growing collection.  We joke that we’ll empty our bank account $4 at a time. 🙂  Some crazy kind people even sent him some balloons too.  They absolutely delight him…totally his fave!  On our second trip down to the gift shop in search of a Mickey Mouse balloon we’d seen, I mistakingly forgot Leo’s puke bucket.  As we were checking out he started to projectile vomit all over himself.  I instictively stuck out my hands to catch what I could and started asking the cashier…who was checking someone else out at the time…if she had any paper towels.  She looked at me and Leo and then ever so carefully unfolded a paper card bag and passed it over the counter.  He then puked in the tiny paper bag until the bottom broke through because thin paper + vomit = not a good puke container.   More hilariously awful chaos ensued and it was a disaster of a trip, but by God we got that Mickey Mouse balloon. 🙂

We finally got all his meds figured out, got the boy a new IV line and hydrated like there was no tomorrow.  I can’t remember if I already shared in this space that Leo was diagnosed with Autism earlier this year, but I’ve realized there’s even more to advocate for during hospital stays with a kiddo with special needs and I’m being pretty hardcore about it all.  His team is amazing and listen and take what I say seriously and after working together we’ve gotten a handle on how to make him feel best.  Cannot say enough good things about the cardiac department here at Mott Hospital.

Yesterday and today were our first real good days.  It kept feeling like not our best day, but not our worst either.  A mix of highs and lows, but these last two days have felt really good for him.  He still has chest tubes and some pain and sad moments when he’s homesick, but seeing his personality in full force again is so good for all of us.  We missed him a lot and it’s nice to have a large portion of our Leo back.

Josh has been handling everything back at home.  It’s all hard, but he’s working it out like he always does.  He’s working from home and doing all the things solo, but with all the humor and wit per his usual.  Harper, Hudson and Solomon all went to overnight church camp last Sunday and everyone is back at home now.  We always look forward to this week because the big kids have the best time ever and we always make it a yes week for the littles…pretty much anything goes.  I was really sad to miss out on this special week, but Josh Kelley did what Josh Kelley does best and handles our shit. 🙂  He worked from home all week and planned out fun things for Amon and Winter every day…minus the day Winter had a stomach bug.  And let’s not even discuss Hudson and Solomon having middle school orientation.  WHAT IN THE WORLD and HOW DO WE HAVE 3 MIDDLE SCHOOLERS!?!?!  So let me just proclaim my love for Josh Kelley once again because he’s too legit to quit.

Leo’s days are full of taking walks and rides and watching a gazillion movies and eating all the foods now that he can finally keep food down and getting his daily balloon and going outside in his stroller and blowing bubbles to expand those lungs and watching cars pull in and out of the hospital and painting and coloring and stickers and bossing us all around and hiding from his medications under his blankie and resting and facetiming with Dad and all the Kelley kiddos and being unimpressed with my chalk skillz.

I love that I am here with him.  It’s feels bizarre to be walking this recovery road out because I always wondered what recovery with Everett would have been like…what being out of the PICU would have been like.  Now here we are with Leo and I am just so crazy honored to be by his side helping and encouraging him and advocating for him.  What an immense privilege this is.

It’s also lonely.  I miss home and Josh and the kids and I’m exhausted as Leo needs help a lot at night.  Sad moments still hit me hard about Everett and that’s pretty sucko handling solo.  I’ve cried a lot and I miss my mom too.  I know without a doubt she would have been here to visit us and be her crazy self.  She would have gladly stepped in to help Josh whether it was having the other kiddos to sleepover or bring meals or do laundry or whatever…she always insisted on helping with all the things…and did it with the greatest joy…made us feel so crazy loved…and I miss that a lot.

Things I am loving at the hospital:

1. Facetiming with all our people and Winter’s hilarious personality via FaceTime.

2.  Soft pretzels as big as my head.  Leah, Ashley and Alissa had a 1lb ginormous and delicious soft pretzel delivered to the hospital.  It was HUGE and amazing.  Leo loved it just as much as I did and his nurses got a kick out of him lounging in bed with a pretzel delivered in a pizza box.

3.  Sweetart ropes.  OMG!!!!  If you have not had these and like candy BUY THESE ASAP!  They are amazing and I’ve already bought all the gift shop had and shared with the cashier that I did so she’d know to order more.  Seriously, favorite new candy…right up there with twin snakes.

Sidenote:  Found THIS on Amazon and am totally going to purchase for the Kelley kids one day.  Also, what a fun birthday gift for basically every kid I know.  SO MUCH FUN!  End Sidenote.

4.  Looking for rainbows everywhere.

5.  Practicing my lettering and creating with Leo.  I draw and/or write something every day and Leo paints and colors every day.  It makes this place feel more like home and we both need that.

And 6.  Therapy dogs that are the size of a small horse.  This is Darla and Darla absolutely made our day.  She was so sweet and gentle and THE BIGGEST DOG I’VE EVER SEEN.  And now I want a Great Dane.

Tomorrow Josh Kelley and the kids are coming up to visit.  Everyone is beyond excited and thrilled because we desperately miss one another.  We all cannot wait and we’ve got a special boy’s birthday to celebrate together.  So I’m off to shower because it’s been a while and try and get some back-to-school shopping done online…everyone starts school in 10 days….and maybe snag some sleep before our people arrive and the band is back together.

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.

We left yesterday for Ann Arbor, Michigan.  Leo will have open heart surgery tomorrow morning and of course we’re feeling all the feelings about it.  All day Saturday I noted every big and small moment.  Like when Winter was helping me make waffles and she said, “It’s going to be hard without you.”  I told her it would be hard without her and she squeezed my neck tight.  We’ve been gearing up for this moment…like getting our game faces on…and now it’s here and the triggers and trauma are so real.  We know Everett and Leo are not the same, but we also know death is real.  The last time we left for Ann Arbor Everett didn’t come home with us.  I can’t even begin to explain how layered this is and how intense grief is for us and our kids.  It’s always something new and blindsiding…something you did not see coming and of course everyone is crazy nervous about sending Leo in for surgery.

Saturday we prepped like crazy…lunches for the whole week, breakfast items, laundry, packing, etc.  As I was packing some toiletry items I noticed Everett’s toothbrush still in our cup, still in it’s travel cap.  We never unpacked his backpack, but I had carried his toothbrush in my toiletry bag.  I remember unpacking and not wanting to throw it away so I dropped it in our jar along with our other toothbrushes and there it stayed.  We had most everything wrapped up before dinner so we could enjoy making homemade jiaozi together.  I watched as everyone stuffed dumplings and Harper taught Amon how to use her melon baller on a watermelon.  There was not one bite of food leftover…as it should be.

After dinner we went to Everett’s grave to hang new flags.  We talk about him all the time.  What I love is that Leo talks about him just as much.  I love that their brotherhood can exist even after death.  The bigs ran around the cemetery and Winter and Amon road their bikes.  Leo walked around watching Josh and I hang Everett’s new flags.  I love that our cemetery lets us outwardly express our love for him.  It means a lot to each of our hearts.  Every time we leave town we go by the cemetery.  We know he’s not there, but it feels good to stop by and especially with the week ahead we wanted to celebrate our brave and strong FuShuai.

Afterwards we hit up Tiger Market for icees.  I noticed the cashier watching us closely.  We hadn’t met him before as we’re usually there in the middle of the day.  When people are watching us closely I usually prepare for inappropriate questions or rude comments so my guard went up.  As we were checking out, he asked if we just had icees, I confirmed and then he said it was all taken care of and told us to have a great night.  I instantly teared up because come on, icees are one of my love languages and medical debt is real and more heart surgery bills are looming and we’ve been bleeding money and that $8.71 felt like a million dollars in the moment.

Sunday morning consisted of donnas and The Emperors New Groove and washing the last of our laundry and packing any final items.  Everyone was pretty chill about it all and then Winter broke down into tears at the Dairy Queen after we finished lunch.  She sat in that geometric patterned vinyl booth and cried loudly, “I don’t want Leo to have surgery.”  She wailed in the car, tears streaming down her little face.  I listened as Solomon leaned in close, “Winter, it’s what his body needs and he’ll have surgery and come back home to us and then it will be a long time before he needs another surgery.”  I feel so utterly unworthy for any of our brilliantly beautiful children.

The kids lingered in the driveway and got all the hugs and kisses from Leo…minus Amon, who was too hyped about going swimming at Ms. Marcie’s house.  He got his hug and buckled in the car asap.  The kids also all dodged being bit by Leo because we were late leaving and he was crazy tired.  It was hard and sweet and hilarious.  Tight hugs and dodging bites.  This is life with Leo.  I drove them all over to Marcie’s house.  As we pulled onto their street I reminded them they are the strongest kids I know.  Winter cried some more so I carried her giant little body into Marcie’s, but their pool was soon calling her name.  I gave hugs and headed out.

Josh Kelley, Leo and I drove all day and arrived in Ann Arbor way past Leo’s bedtime.  I did learn from the Taco Bell employee in Ohio how to still order the Meximelt even though they removed it from their menu. *Cheesy roll-up + beef + pico de Gallo*  This is life changing.  I was legitimately upset I could not get a meximelt anymore.

Josh listened to The Big Short audio book.  Leo was pretty restless at first, but then fell asleep and did great the rest of the way.  I jammed to Lizzo and Houses and Mumford and Sons while I wrote and scrolled trying to tap out from the reality of  where we were actually headed.  When we pulled up to the hospital I started to cry.  Here we were again.

Leading up to this day I’ve fought mind games constantly.  One day I was putting a few pickle jars on our kitchen shelf and thought, “I wonder if I’ll need these for Leo’s funeral.”  I dreaded packing Leo’s backpack because it made me think about his backpack joining Everett’s, still packed, on our closet floor.  I desperately want to take the travel cap off of Leo’s toothbrush.  This was continuously involuntary.  We are, what I like to call, jaded hope holders.  We will always always hold onto hope like our lives depend on it because they do and because we owe it to ourselves and one another, but we’ve also buried our 3-year-old son on what should have been his 4th birthday and then watched a large portion of our people scatter and have been working to piece our life back together again.  I’ve wiped a 1000 tears from our children’s eyes and I’ve sat dumbfounded with no good answers to their hard and legit questions.  So while we’ll always be hopeful, this is still very hard.  When I think about actually letting Leo’s team take him back for surgery it makes me want to absolutely vomit…so I try not to let my mind go that far yet.

Today we pre-opped all day and are soaking sweet Leo up.  This morning I whispered in his ear, “I’m so glad you are here.” like I have countless times before as I slipped into his bed to snuggle.  We we’re at the hospital most of the day gearing up for tomorrow morning and there we’re highs and lows.  There was joy and sadness…moments of laughing with Leo and his sweet, quirky self and moments when Josh and I flashed either a look with watery eyes and knew the other was thinking of Everett and remembering sacred moments.

 We wrapped things up at the hospital and headed out to get some noodles and dumplings for dinner.  He was hilarious and sweet eating and chatting and carrying his leftover noodles out in a bag over his shoulder.  It’s just all so surreal feeling and I still cannot let me mind get too far ahead of myself.  Trying to keep my thoughts reigned in close to just that very next moment.

We hit up Target after dinner and then headed back to our hotel.  And now we’re doing all the regular pre-surgery things and FaceTiming with our other kiddos and staring at Leo all heart-eyed and we keep asking one another how we’re doing and what the other one is thinking and getting all the Leo snuggles and hugs we can.  We are hopeful and simultaneously scared to death and would so appreciate all your thoughts and prayers and hope…whatever you’ve got…we’ll take it. 🙂

We are so grateful to be in such an amazing hospital and that Leo’s heart will be in such incredible hands.  We have all the emotions and feelings, but we know he’s ready…his little body is telling us it’s time.   So we hope. We white knuckle hope with every ounce of our being.  Just really need him to be okay. ❤️ So let’s go Leo boy. You are so brave and so strong. It’s your time love!

This past week could possibly have been our last week of wave pooling this summer and I am feeling incredibly sappy and sentimental about it all.

Last Sunday I was floating out in the waves watching Josh Kelley and Leo be so absurdly cute floating together in their float while Winter swam around them.  I stared at them so googly-eyed I probably looked like a crazy, but I could not get over them and this place.  People from every walk of life trying to stay cool in Tennessee’s summer humidity and here we all are brought together by this giant watery fun.  It just feels so special.

Every one of our babies have swam in these waters.  We’ve made friends and met kind strangers.  Summer love at it’s finest.  We’ve eaten all their delicious cheaply priced concession stand food and we’ve got packing for the wave pool down to a science…we’re a well oiled wave pool machine…because this is what we do.  It’s the #1 thing my kids request to do in the summer and for good reason.

I’ve had more chats with our dear friend Ashley who works there sitting in those shallow waters.  I’ve laughed and cried in this place.  I’ve felt hopeful and hopeless in this place.  My kids have had more summer fun here than anywhere else and seeing Ms. Ashley is a summer norm.

I watched as Ashley carried Everett out to our car the week before we headed to Ann Arbor for his surgery and cried because she’s just one of those good ones.  After Everett died Ashley opened those blue gates early and surprised us with a celebration for Everett’s 5th birthday with friends and family.  When we walked in Friday morning Ashley’s daughter came running over and bear hugged my waste and her son hugged Leo.  It was this sweet little moment when I was feeling extra tender about it all.  Yes, this place and all of its people are so good.

I listened to Led Zeppelin play over the loud speaker and thought how lucky Nashville is to have this place and its people.  I watched as my big kids ran off with their friends and favorite lifeguard who was getting them all icees because she’s the kindest.  I watched Winter earn her water legs this summer here and now she’s a fish.  Our summers are marked by faded swim suits and how many bottles of sunscreen we emptied due to this place.

Josh and I  agreed we’d still come to the wave pool when all our kids are grown.  We’ll pack our chairs and a cooler and I’m definitely going to bring my own full lounger float.  Who knows, I might even wear a bikini.  We’ll eat a hot pretzel and still snag icees on the way home. Wave Country has us dreaming about our early 50s. 🙂

The world is crazy right now and Wave Country is our watery oasis.  I love not being able to spot my black kids right away because there are so many other black children there too.  I love hearing different languages spoken and seeing all the different swim suits and lunches people haul in.  I love that this summer fun place is racially, culturally, socioeconomically and abilities diverse.  I love that this place has been made available to all. 

Wave Country, you have our summer hearts forever.  This world is hard, but gorgeously beautiful.  If only we could all take a clue from your waters…we’re so much better all splashing around together.