Arrangements & In Lieu Of Flowers Let’s Love

It’s been 5 days since Everett died and it’s simply the most unreal thing I’ve ever experienced.  I really thought I was pretty prepared since I’ve walked this grief road before when Mom died, but whoa, whoa whoa!  I was not as well prepared as I thought I was.  Everett lived in our house and was brother to 5 children in our home and rode in our car every day and sat on our countertop every single morning for breakfast and snuggled in our bed and his things all over our house and there we’re certain things he did with each individual family member and and and.  A beautifully painful reminder is all throughout our house and there are 7 people grieving deeply the loss of their son or brother under one roof.  No way any of us we’re really prepared for this.

Sidenote:  Not sleeping did in fact carry over from one grief experience to the next.  Hence I’m posting this at 2am on Sunday morning.  I keep wracking my brain trying to remember when I finally started sleeping good again after Mom died.  I need a nap or 10 cocktails.  You pick.  End Sidenote.

We have been working on arrangements for Everett and I seriously could not make one decision the first few days…more or less pull off a funeral in such a short amount of time.  His little body didn’t even arrive in Tennessee until Friday.  So even though it’s not your typical funeral turnaround time we decided to do nothing until this coming Friday and Saturday.  I seriously can barely think straight and the first few days I couldn’t think at all.  So we decided to ditch the normal and do what worked for us.

His obituary will be published today in our local newspaper and I wanted to share the arrangement part here with you guys.  I’ve had several asking and also wanted to share a little more since I was limited in the newspaper because they charge you $423 dollars per line.  Geez newspaper.

“Visitation will be held on Friday, July 28th from 2-8 pm at Northside Church of Christ in Nashville, Tn. A celebration of his life will be held on Saturday, July 29th at 5pm at Rock Castle in Hendersonville, Tn. If you plan to attend the celebration please bring food to share and lawn chairs or quilts. Drinks & desserts will be provided. In lieu of flowers a memorial fund has been set up at Pinnacle banks in the name of Josh & Laura Kelley FBO Everett Kelley Memorial.”

All the arrangements we’ve made…vistation and celebration of his life… are kid friendly because well, Everett was a kid and kids are fun.  No one wants to go to a child’s funeral so we’re doing our damnedest to make this a little less miserable for everyone.  Saturday is Everett’s 4th birthday so a celebration was in order.  We will have a small service starting at 5pm and after that we will celebrate.  We are asking anyone coming to the celebration to bring some food to share and we’re providing all the desserts, drinks, paper products and fun.  There might even be some bounce houses…we’re working on it. 😉   And please do not wear black…for the love do not wear black.  Let’s just have all the colors people…all the colors…in honor of Everett’s joyful personality and his rainbow piñata donkey Fiesta.

We also have an account set up at Pinnacle banks so people can make a donation in lieu of flowers.  We love to see good flourish in our world.  We also know these heart warrior kiddos are larger than life and we believe in family and supporting these families under financial medical stress.  All donations will be given to the Morning Star Love Project.  Morning Star is a non-profit who not only cares for sweet kiddos, but also comes along side families who cannot afford their child’s surgeries.  My sweet friend Meredith helps run their baby home in China full of the most precious heart warriors around.

“The sad reality for many impoverished families around the world who have children born with congenital heart disease is that they are often forced to make a choice that no parent should ever have to face. The decision to abandon their child or choose to do nothing, taking their child home from the hospital, forced to watch them die.

Can you imagine watching your daughter gasping for breath and having no options for treatment? Surgery is too expensive; the medications are too expensive; there is no medical insurance. What are your choices? Do you watch her suffer or do you leave her at the gate of the orphanage hoping that somehow they will be able to save her life because you can’t?

No parent should have to make this choice, and no child should suffer without a parent simply because taking care of them is too expensive and resources are not available to aid families.

The LOVE project aims at forming a community of believers who come together to reach out to families parenting children with heart disease who because of financial limitations are faced with this terrible choice. We aim to change the conversation. Stand up for the orphan by preventing them from ever occurring. Orphan prevention. Family preservation. Friends, if we are “for” the plight of the orphan, we MUST be for the family as well.

The LOVE project requires significant funding—But the needs do not stop there. In addition to caring financially for these children’s surgeries, the LOVE project will invest in each of the families lives by caring for their physical, emotional and spiritual needs until the child recovers and form lasting relationships that will continue throughout the child’s life.  We walk with them through the entire process and even afterwards we continue to check on them and encourage in any way that is needed.”

 I hope this is something we can all get behind.  We talked and talked about what we could do…how we could use Everett’s story for good…how he could change the world even after leaving it and The Love Project is where we landed.  Sweet heart babies in need of surgeries and rallying around their parents to lift the heavy financial burden…how could we not is the real question!  If you would like to donate in Everett’s honor you can call or go by a local Pinnacle bank or you can donate directly online HERE.  They have some amazing prints available for your donation as well or at the bottom right hand side of the site you can make a donation of any amount.

I wanted to say yet another THANK YOU to all of you.  We have received so many notes, comments, emails and messages as well as all the sweet mail in the hospital and financial support for Everett’s medical & funeral expenses.  The kids have received surprises in the mail and treats of all kinds dropped by the house.  We surely feel all the love and I can barely even keep up with all the things and I’m still looking for my “thank you” list from the hospital I lost.  I like to send thank you notes and always try to, but please know if you do not receive one it’s not because we’re unappreciative, but either because I lost the address of who sent/did what or my brain is not functioning and I simply can’t pull it off right now where I am.  Please please please know we are forever grateful for the way you have prayed and encouraged our family.  It has meant the world to us.

We are all processing and grieving.  Everyone is quite unsure of what to do next.  Josh Kelley keeps saying, “We just have to do the new thing in front of us, just the next thing.”  So we will continue to praise God because He is beyond deserving of praise, rest in His goodness because it is still everywhere and just try and love the best we can doing whatever is next in front of us.  Thank you so much for all the continued prayers and maybe we’ll see you this week…if so…I’ll be the one giving out bear hugs…and likely crying. 🙂

Day 20 & 21: Whole & Healed

Our sweet Everett boy went to be with Jesus Tuesday mid morning.  He is now whole and healed.

On Monday our crew headed back to the hospital to see Everett and us.  We spent the morning loving on our boy, watching movies, eating all the snacks and opening more hospital mail.  You guys have been too good to us and we are grateful.  Mail delivery each day was a sweet highlight.  We all ate lunch together in the giant hospital cafeteria and spirits felt low and feisty.  Our children are carrying heaviness along with the rest of our family who love Everett so fiercely.  This has not been an easy road to walk and we’re all just figuring it out as we go.

In the afternoon Everett’s team along with his neurological team came by to do their final testing.  We all left and went to the hospital play area with the kids.  After a little while our sweet nurse Denise called and said they had finished.  I asked about the results and Everett had been pronounced brain dead.  I felt crushed as I watched four of our children running and playing and laughing.  I also felt grateful for our children’s strong healthy bodies.

We headed back to his room and shortly after we made our move to Everett’s “transition room”.  I hated that word and every time we left and came back through security I had to say it again…”Kelley…we’re in the transition room”.  There was no calling back like our normal rooms, but instead the security guards would just nod their heads softly and let us on back.  While I stayed to help move Everett everyone else went for a walk down to the Huron river close by.  Having some of our people here felt like life and although I know it was extremely difficult for them…Big Daddy, Jen and Campbell…I was so thankful they came to be with us and to love on our children as they process losing their brother.

   The rest of the day was spent just being together with Everett.  We watched more movies, made thumb print medallions for the kiddos and cut locks of his precious hair and stored them away in little glass bottles.  One of our family life team members made hand and foot prints for us as well.

 

The hospital brought us all lots of food.  Sandwiches, drinks, fruit, cookies and coffee.  We all spent time in the big bed with Everett and that was probably my favorite part…the big bed.  We love a good snuggle and everyone loves to pile in our bed at home, so it was incredibly lovely to be able to cuddle with our boy.  And the big bed felt more natural…more like us.

Finally it was time for everyone to say goodbye and it was gut wrenching.  I’d done pretty well keeping it together, but when I realized this was likely, without our miracle, the last time we’d all be together with Everett, well, it was devastating.  Everyone hugged and cried and hugged some more.  Sweet Hudson told me he was still hoping and still believing God was going to heal Shuai and I just kissed his face off because we we’re with him.  We held onto hope the entire time and still do.  Right before they left we gave some things to Jen and Big Daddy to take back with them so we wouldn’t have to take them on the plane.  One thing being Shuai’s backpack filled with all his things we thought he’d need and want at the hospital.  His little shoes we’re tucked in the side pocket.  In my head I panicked because I didn’t want his bag unpacked by anyone else.  I started to ask Jen to not let anyone unpack it and I burst into tears.  She assured me she would not let anyone unpack his bag.  Finally everyone got in their last Shuai love and Josh walked them all down.  I crawled into bed with our boy, snuggled in close and wept over his beautifully broken little body.

Josh and I slept next to him through the night.  I would wake up and look over at him and tears would immediately fall.  I begged God to heal him.  I begged God to breath life into his little body.  I begged God to restore his incredible little mind.  I begged God to let him live.  It was a very surreal night and one I felt inadequate for.  How in the world did we get this lucky??  I will never get over how God used Everett to make us better…to enrich our family even more…to bring us so much joy…and to love us so well.  He was a lover for sure…wrapping his arms tight around your neck and he loved a good cuddle.  He made me feel loved.

Tuesday we spent all day with him until his beautifully broken heart beat it’s last while in my arms.  We played Hillsong United’s Wonder album and NeedToBreathe’s Hard Love album over and over and worshiped our God.  We whispered all the things we wanted him to know in his ears and held him so close. We continued to spend more and more time holding our boy now whole and healed with Jesus.  I tried to memorize everything about him.  I craved to feel the weight of his body again and I craved to hold him without all the tubes and lines and although so unbearably devastating it was also such a gift to my mama’s heart…to hold my baby again like I’d done a 1000 times before.  We each took all the time we wanted.  We never once felt rushed and having our team who had loved us so well and who genuinely loved and cared for Everett too made this terrible process a bit easier.  We we’re surrounded by people who cared and people who shed tears with us too although they’d only known Everett for 21 days.  I told them all one of the things I hated most was that none of them had known him before all this…they hadn’t had the privilege of experiencing his fierce, loving and joyful self.  I showed them pictures instead and we thanked them for how they had served our son and our family.

We finally left him around 4pm.  Physically walking out of that room and leaving Everett’s body was the hardest thing I’ve done.  I just wanted to scoop him up and take him home.  I wanted to go back and re-do everything.  I wanted to hit the reset button NOW.  I wanted him back.  We packed all our bags and left the hospital without our baby and it was every bit has horrible as it sounds.  Absolutely devastating and it sucked the breath out of lungs and the tears poured.

The hospital so kindly booked us a hotel down the road and we caught a ride there.  When we checked in the lady asked “Everett?” for our name after we gave her our confirmation number and I burst into tears again.   The Chinese restaurant where we ate with Everett before his surgery was close by so we decided to walk down for dinner and celebrate our boy with rice noodles and pot stickers and sweet and sour chicken.  The waitress started to sit us at the same table we ate at with him and I quickly asked for a booth…I just couldn’t do it the exact same without him.

I slept little.  I cried a lot.  Everything feels like a dream, but I will always always lift Jesus high in this holy mess we’re in.  He is still good.  He did not change with Everett’s death.  Are we sad and angry and miss him desperately?  Absolutely and even more, but God did not change and I will continue to remind myself and our children of this.  I will fight like hell to make sure we all know true and deep that God alone is good, He still loves us all the same and that losing Everett broke His heart as well.  We are not alone in this sorrow and He sits with us in the midst of it and grieves as well.

This morning we boarded a plane and headed back to Nashville.  I carried Everett’s handprint and footprint molds which we’re still wet through the airport and in my seat on the plane so as not to mess them up.  I kept thinking, “Do they know?  Do they know our son is dead and we just left his body in another state?”  It was the weirdest.  On the way home Josh’s dad drove us by the cemetery he and his mom had visited for us the day before.  He gave us all the specifics and I just kept thinking this could not be so.  We are not shopping for burial plots for our 3-year-old.  It made me ache in a new way for all those other parents who have lost their amazing children.

And now we’re home.  Everything in our house is a gorgeous painful reminder of Everett.  Everything.  I’ve already more than once thought “Where’s Everett?” while doing my normal mama mind thing of locating all my children.  Our kids are incredibly sad and are all grieving in their own ways.  Amon did not fully understand until he realized Shuai was not with us at home.  They are doing well to figure out what works for their hearts…some like to draw while sad, some like to cry, some want to go outside, etc.  We’re keeping the dialogue open.  We’re letting them see us cry too.  We’re letting them know this is a mess and we’re all figuring it out together.  And we’ve got kind people in our lives who let them play and take them swimming and just let them have fun.

We are working on arrangements now and will share with everyone once we know.  This is just hard and we’re not sure how this all should shake out.  We are incredibly grateful for all the prayers, love & support and we will always sing a song of hope.  You have wrapped us up in love in so many many ways and we feel so seen.  While we are absolutely devastated we know God is an “infinitely wonderful being” and He used and is using sweet Everett’s story for His glory.  May we lift Him high and sing no other name than His.  We are surely the luckiest mama and daddy…we’re honored to have been his.  What an incredibly strong and brave little boy we were gifted with. We couldn’t be more proud of our Everett Louie Shuai.

Update: Day 18 & 19

It feels like a lifetime since I last posted here in this space despite it really just being two days.  I’m not quite sure what all I want to say, but I know I feel anxious and sitting in this space putting my thoughts into words is always good for my heart and mind.

Friday night my sweet friend Jamie sent me a song her husband Aaron had written around 9pm.  As I listened I just weeped because it was absolutely my heart’s cry.  All my feelings wrapped up in a song and I seriously played it over and over throughout the night.  I stayed with Everett until around 3am.  I shared my earbuds with him and we listened to the song together over and over as I just begged God for a miracle in his little body…sweep through him Lord and give him life…heal his heart…restore his sweet mind…breath Your life back into his small beautiful body.  This song I felt was just for us and this time we are journeying through.  The entire song nails my heart.

Though I may suffer for a while, I have a hope that’s undefiled. I see the part, but not the whole. I know this world is not my home so I want to see Jesus lifted high. I want to see Jesus lifted high.

“Jesus Lifted High” -Aaron Ivey

When I woke up I had multiple messages from friends and strangers all sharing the same article with me and telling me they hoped I’d found my night’s song.

“Your way was through the sea,
   your path through the great waters;
   yet your footprints were unseen.
You led your people like a flock
   by the hand of Moses and Aaron. Psalm 77:19-20

Psalms of lament exist because of sin, but steadfast hope attends our cries because of Jesus: obedient, stricken, smitten, afflicted, crucified, dead, buried, risen, victorious, ascended, reigning, coming again — knowing that, one day, he will wipe away every last tear. 

Lament and confidence are never mutually exclusive in the Psalms, and they ought not to be in our lives. Lyrics of sorrow mingle with lyrics of joy; the people of God sing through tears and trials, on the mountaintop or in the valley.

God is faithful to give the sweetest of songs in the blackest of nights. He gives us the strength to sing them when all we can muster is moaning. He is teaching us to sing, taking us by the hand, leading his people all the way home. He is the God of those 3 a.m. moments. He is preparing his saints to sing an everlasting song of unrestrained joy, offering full-throated praise to the glory of the Lamb who was slain. 

As we wait for the day when darkness will be no more, he gives us a song in the night. 

He is our song in the night.”

I read the above portion out loud in bed and cried.  I felt so seen and so loved.  I had surely been given my night’s song to worship and praise our Father who is always deserving of such things.

Yesterday was full of more waiting and hard conversations as we got further and further out from the last time Everett had received sedation medication.  His team really needed to see him move and there we’re still no movements outside a slight mouth twitch when he was getting his teeth brushed.  His EEG machine remained unchanged as well and showed little activity.  The plan was to wait until Monday to do another CT scan.  We also talked with the kids about his current state and what all that might mean.  We made sure they understood we we’re not giving up on Everett and that we we’re all still praying and holding tightly to hope.  They we’re sad and okay.  The decision was made they needed to head on to Michigan the next day to see their little brother.

This morning as we we’re getting ready to head to Everett’s room we got a phone call from his nurse.  Some concerning things had changed and they we’re taking him down for another CT scan right away.  By the time we walked down the hall to his room they had already removed his EEG machine and we’re getting ready to go.  We shot off texts quickly asking for prayers and a miracle while Josh’s dad, sister Jen, our niece Campbell and 4 of our kiddos we’re already headed our way from Tennessee.

Neurology came pretty quickly to discuss their findings.  The CT scan confirmed Shuai had suffered severe brain damage and now had excessive swelling as well.  The little neurological signs we we’re hanging onto we’re no more and the neurosurgeons confirmed they could not help him.  He will stay on life support as his team begins a series of tests to confirm brain death.  After they left I read my devotion for the day and again God met me right where I was.  It talked about surrendering to God what you hold most precious.  In a time right now when all I want to do is hold Everett so tightly I was reminded again to lay him down at the Father’s feet…surrender him over to the One who is his Creator…to the One who loves him far more than I ever could.

 We had more hard conversations through out the day with doctors and everyone knew our kiddos would be arriving late in the afternoon.  Harper has been so concerned about three things: 1) Everett’s birthday which is on the 29th 2) His best friend who will be coming home soon and 3) That something bad would happen while she was here.  We decided we would have a birthday party for Everett while they we’re at the hospital and our team encouraged us to celebrate today rather than tomorrow for caution’s sake.  If something happened they did not want our family and children to miss out on this special memory.

With just a few hours before they would arrive Josh and I headed to Target and Kroger and I left the hospital for the first time in 19 days.  I cried and felt so anxious, but our nurse and respiratory therapist encouraged us to go and that Target was only 5 miles away.  They promised to call us if anything happened at all, so we headed out.  We got party supplies…minion plates and napkins, banner, pom pom & honeycomb buntings, a number 4 candle, fun sodas, birthday hats & party blowers, balloons and cupcakes.  I broke down into an unattractive sob in the Target aisle…I just could not believe we we’re doing this.

Before the kids arrived our nurse Denise let us pick a shirt and she cut it up the back and up one sleeve and slipped it onto his small body so Everett would resemble more his normal little self and cover up all his tubes and lines.  When I went to pick out what shirt for him I sat on the ground in our little room in front of my suitcase and sobbed some more into his sweet clothes.  We decided to put him in his “best” shirt that his best friend has the “buds” shirt to.  It seemed like the perfect choice since they have celebrated every one of their birthdays together.

Our kids and family arrived and honestly it was the sweetest time for us all together.  It felt so needed and holy.  We watched a movie and laughed and cried.  We ordered pizza…Shuai’s favorite…and sang happy birthday to him.  We ate treats and drank sodas and talked and I soaked in my people I’ve been missing so much since arriving here.  My niece Campbell leaned over and gave me a hug and said she loved and missed me.  I leaned in and gave her a kiss on her cheek and told her how glad we were she came.  And Amon took over birthday party photography at one point and said things like “say party people” while snapping away.

 Josh’s brother Andy called from China and I could barely get a word out to him through my tears…he loves Everett so well…and he even sang some happy birthday to him in Mandarin.  The kids we’re sad, but also happy to be back together.  They asked a few questions and they all had thoughts to share here and there.  It was just a moment we will surely never forget.  When they left Josh looked over at me and said, “Well that was good.”  And it really was.

They’ll come back tomorrow too and we’ve made a few other plans.  Right now we are just praying and begging God for a miracle.  Hope is not lost and will never be.  Jesus Himself gets the final say and we are choosing to believe in our Healer…our Miracle Maker.  He is wondrous and good.  Today was another special day to praise our Savior and celebrate His handy work in the creation of Everett Louie Shuai Kelley.  What a gift we have been given in our son.  We are surely the luckiest.  And Everett has made our lives so much richer and even more beautiful…he is a treasure.

Please continue to stand with us in hope.  Please continue to petition our Father to breath life into Everett’s little body and restore his mind.  We know He is able!

Day 17: We Refuse To Be Hopeless

The first thing I want to write is how genuinely thankful we are for the way you guys…people from all over…have joined us, taken hands with us and linked arms with us in prayer for our Everett…our Shuai boy.  It has been absolutely stunning and I just could never express how deep our gratitude runs.  The comments and messages and mail and texts and emails and gifts and support are overwhelming in the sweetest way.  Our son is loved…we are loved…and it has helped carried us.  I cry when I read your words and literally burst into tears when I read these words from one of you…”Hearts across the internet have taken Everett in.”  That one sentence encompasses how we feel…we feel you have taken Everett into your own heart and loved him and prayed for him and as I sit pouring tears over my keyboard we are indebted to each of you for your kindness, thoughtfulness and incredible love.  Thank you seems so small so please know how truly thankful we are.

Taking Everett down for his CT scan was quite the ordeal and when they rolled him away we felt the emptiness of his room.  Josh and I just hugged where his bed was then waited for him to be brought back.  It was quite the long day.  Radiology initially thought they only saw swelling..which was expected…and there was no bleeding.  Our doctor shared sometimes damage takes a few days to appear and that neurology would have more to say.  When he was sharing the news I felt in my heart, “Not today.”  I am immensely grateful for another day with Everett…more time to soak his little self up.

At one point during the day Everett’s nurse Denise saw the corner of his mouth twitch while brushing his teeth and he tried biting down slightly on the brush.  We also noticed his EEG machine had changed slightly.  Truthfully, although so small, this was so much hope for us.  I stood by his bed and felt deep hope.  One of our translators came by and I told her we didn’t need anything right now.  She walked out and Denise bolted out the door after her.  She brought her back and got her to tell Shuai to continue to fight and not to give up.  Then she so sweetly started crying and pouring words over our boy in his beloved mandarin language telling him we…his mama and baba…we’re there with him and loved him so much.  She told him God was with him and encouraged him to keep fighting.  We all just cried and watched as she spoke so beautifully over him.  Afterwards she told us what all she said and we hugged so tightly.  What a sweet gift from God in that time.  It was a moment I was privileged to watch and be apart of.

The neurology team came by his room around 2:40.  Josh had gone to take a shower so I started calling him.  The team proceeded to do an exam on Everett testing certain things on his little body.  They finished and I told them Josh said they could start without him.  She asked if I was sure and I told her it was fine.  In my head I thought they we’re just going to say the same thing radiology had.  One of the ladies looked me in the eyes and said, “It’s not good at all.”  And I was shocked.  I started looking around and Josh walked though the door to his room.  I was stunned and think I said something like “It’s not good.” to him.

The team had us sit down and proceeded to tell us Everett had moderately severe to severe brain damage.  His EEG, CT scan and his exam had confirmed these things.  I felt like they we’re giants all towering around us and I remember I started focussing in on the Mumford and Sons song playing over his room speakers instead of their words.  Our doctors and Denise and Matt all looked on behind the team.  I felt so bad for all of them.  I honestly can’t even tell you what all they said except things like “we’re not hopeful” and “not the same child”.  With his brain damage they feel they cannot fix his heart right now.  I sat absolutely stunned and in shock and only asked one question, “I don’t understand.  If his heart is so sick and he has such severe brain damage how will we get out of here?”  His sweet doctor said, “We are all asking ourselves the same thing.”

As of right now the plan is to just wait and watch and see if anything changes over the next few days.  We are absolutely devastated, but please hear me when I say, we refuse refuse refuse to be hopeless.  God is too good and Everett has fought too hard for us to throw in the towel now.  We owe it to Everett to hold onto hope…to beg God for a miracle…to rally all our people and storm heaven on sweet Everett’s behalf.  Oh God, be near and hear our cries.

He is in the business of miracles.  He can restore Everett’s body completely.  He can breath life into his little mind, body and heart and we are begging Him to do so.  We will choose hope.  We will choose love.  We will choose praise.  We will sing our broken hallelujah because God is so deserving of our praise.   God does not change based on our circumstances.  He is the same…steady and unwavering.  May we sing no other name than His.

I know we’ve asked for so many prayers, but please keep praying and hoping with us.

Update: Day 17 {please pray}

Everett still has not woken up or moved and his EEG machine is not showing much activity. His lactate is still high and is not coming down which signals the death of cells.  The two main things that are acceptable to this are his brain and gut.  Radiology is looking at images of his gut they took and they are taking Everett down for a CT Scan at 10.  It’s 9:45 here and they are taking him down soon. Please please pray for a miracle in his sweet little body.

Update: Day 15 & 16

I want to make sure I document here because this blog is like my memory so I will definitely go into more details below, but as not to blindside you sweet people who even stop by to read and pray over our family, sweet Everett went into cardiac arrest again this morning and after lots of compressions and still no pulse, he is currently on full life support.  I know.  It’s a lot and we are obviously indescribably sad. I will share more below.

They ended up getting him extubated around 1:30 Tuesday afternoon and he did well and had a good night too.  During that afternoon his nurse insisted I get to hold him even though it was quite the ordeal.  I am so glad she was determined to let me hold him.  I can’t say that enough.  It was the sweetest time.  He was a little restless at first, but then settled in.  I cried literally on top of him, breathed him in deep and whispered in his ear the truths that he is brave, strong and loved.  He fell asleep and rested and we took a little nap together in the recliner chair.  What a precious gift it was to hold my boy and feel the weight of his body on mine.

He remained extubated all yesterday as well.  They also moved him to a private room in the ICU so he could get better rest.  He was previously in an open area…not a private room…with lots of little babies where he was the oldest.  They even got started on some physical therapy with him and were working really hard on his breathing and clearing out his lungs.  Clearly it was exhausting as he fell asleep while working on sitting up in his support foam chair.  Gah.  He’s the cutest.  And I even got to hear him say “mama” twice and he asked for water once.

Last night I ended up staying in his room until around 2.  He finally settled enough where I felt okay to go grab some sleep.  When I got to his room around 8 he was struggling with breathing and his team had decided to intubate him again.  His heart went into arrhythmia again and threw a super high heart rate and when they were intubating him he went into cardiac arrest again.  His room filled and I lost count on 16 people in his room.  I watched them do compressions and stopped looking at the clock after 20 minutes. One of his surgeons said he thinks it was around 40 minutes.  They still could not get his pulse so they worked quickly to get his little body on an ECMO machine which is full life support.

I called Josh on the phone when it all started to happen.  He’s been back in Nashville taking care of the kids and working, but his dad booked him a flight asap and he hopped a plane and was here in Michigan by noon Tennessee time.  I could have sobbed a river thinking about him being so far away for this and then that plane ride, but he’s here and got to see his boy.  There are still lots of unknowns and questions and his team is working very hard to figure things out.  Right now they are assessing any damage that might have happened to his brain and internal organs during his arrest.  His brain activity is being monitored on the EEG machine and they have taken him off all sedation medications in hopes he will wake up to show them some movement and then they will immediately heavily sedate him again.

We did talk to our surgeon today and if Everett can get back to baseline on life support they will take him back into the operating room on Monday on ECMO and try and replace his AV valve.  This was not the plan they wanted to do, but Everett’s pretty much pushed their hand.  There are lots of things they are worried about, but this is the best plan for now.  They feel his severely leaking valve is only part of the problem, but a big contributing factor to why he is having such a hard time breathing and recovering.

We’ve had the best staff.  So many people came up to me when everything was going on and I was watching in the hallway outside Everett’s room and said, “You’ve got the best of the best in there working on your son.”  I found both of the nurses who did compressions on Everett and thanked them.  One smaller framed woman who literally got on his bed to do the best job she could to help save his life gave me the biggest hug.  Definitely buying them all cookies tomorrow.  He had two out of his three surgeons who have been in all his surgeries…they opened him up right there in his little room and got him on life support.  We had the sweetest nurse, Denise, all day today.  We’ve had her previously too and I just love her.  She talks to Everett the whole day…telling him every little thing she’s doing to him…telling him how hard he’s working and how special he is.  I tear up constantly because she knows how special our boy is and she treats him with such care.  I even requested to have her back and we get her for the next 5 days she’s working.  And tonight we’ve got back Matt, one of our favorite night nurses that has been with Everett 5 or 6 times now…including last night.

In the midst of Everett’s chaos this morning…watching compressions and watching his team work to get him on life support…I told God over and over again, “I will give you glory.  I will praise your name in this.  I will give you glory.  I will praise your name in this.”  The whole situation is no where a parent wants to be.  We are incredibly heartbroken and sad.  Everett is absolutely pitiful looking…chest open and tubes everywhere.  This was not in our plans for our beautiful, vibrant, life-loving son, but God is still good.  This does not change who He is and I will say that over and over and over again because I need to remember it every day.

My devotion today was perfection because that’s what God does.

“We must be willing to live by faith, not hoping or desiring to live any other way.  We must be willing to have every light around us extinguished, to have every star in the heavens blotted out, and to live with nothing encircling us but darkness and danger.  Yes, we must be willing to do all this, if God will only leave within our soul an inner radiance from the pure, bright light that faith kindled. -Thomas C Upham

We surely feel like so many lights have been extinguished and that the stars have been blotted out.  We surely feel the darkness so heavy as we watch a machine make our son’s heart beat and fill his lungs with air.  Oh do we feel it, but we serve a God who always provides hope…who always leaves that pure, bright light that faith in Him will ignite…set a blaze.  Please continue to pray and hope with us.  Please continue to have wild wondrous faith in a God who can do miraculous things right before our eyes.

Update: Day 14 + Extras

Wanted to get a jump on an update today and Everett is pretty chill right now so no time like the present.

Everett had another pretty uneventful night.  They made his sprints much tougher last night and he did okay.  Not the best, but not the worst.  This morning he’s not sprinting, but they made his regular breathing tougher and continue to make it tougher as the day moves on.  So far, so good.  If he does okay they’ll try extubation this afternoon.  Also he got a random bad liver result so GI is going to do an ultrasound soon to check on that.  I laughed when the doctor pointed to his own liver and kindly reminded him Everett’s liver and spleen are reversed.  He chuckled too.  Heterotaxy probs 🙂  He’s also retaining more fluid than he’s putting out again so he needs to get the fluid off.  So for today that’s our game plan and I’ll try and check back in maybe tonight for an update.  If you’d like a quicker update you can check out my Facebook or Instagram page.  Those are just easier and quicker to update.

In other news:

So many of you have so kindly been asking how our other kiddos are handling everything.  An easy, short answer: pretty good.  Everyone is missing everyone big time, but Josh is planning on driving up with everyone this weekend.  I simply cannot wait and think this will be crazy good for all of us.  Let me also take a moment and do an annoying brag on Josh Kelley.  You guys, he by far has the harder job right now.  He misses his Everett boy something awful, is far away from the instant updates, is working, is loving on the kiddos and gauging all their emotional needs right now and getting everyone where they need to be, fed, cared for and moderately groomed & bathed. 🙂  He’s doing it all and kicking ass, which if you know Josh Kelley, you know this is not surprising because this is just what he does.  He’s their dad and he knows what an all encompassing and important job that is.  End brag.

We have had the sweetest help with the kids too while we we’re both in Michigan together and while Josh goes to work now.  I have not for one minute worried about them and I know Josh feels the same.  We know and are loved by some seriously special, kind and loving people.  I hope they all know how thankful we are.  It really is so amazing.

Amon started another tee ball season.  It was the sweetest because I got pictures from several friends and family since I couldn’t be there.  It meant the world to me to hear updates and see Amon.  He was definitely living the dream and has asked us no less than 117 times when his first game would be this season.  The boy loves to play the game.

Harper left for her first church camp on Sunday.  I was a little bummed to miss out on helping her pack, getting her things together, her costumes for their themed days and seeing her off.  Jen and Susan stepped in to help with all her themed days and Josh got all her supplies.  I cry when I think about it because I’m just thankful for people who just do what they do…like helping your 10-year-old line up themed outfits.  She is loved…we are loved.

Lots of you have asked about sending mail for Everett.  You are more than welcome to send him some if you would like.  I’ve sent this already to lots of you, but here it is for further requests.

I have felt all the love since arriving in Michigan.  Aimee has made sure of this.  She and her sweet, kind friends have gone above and beyond.  They have brought conversation and laughter, food, sent gift cards and sweet things like books & treats.  They’ve prepared homemade meals, smoothie bags and scripture cards.  They’re small group made a blanket (which I keep using…hahahaha) and prayed over it for Everett.  They met in the lobby and prayed when we got the news about his valve leaking worse than before.  Aimee picked Ashley up from the airport and took her back when she left.  They even brought me a blender to make smoothies.  None of which I asked for and none of which I deserve and yet, they just keep doing…they just keep loving.  I actually teared up over my homemade taco salad last night.  It felt like home and I felt loved and seen.  While I am not the best at accepting help…Josh neither…this whole experience is teaching us how to receive and say thank you and I feel very humbled and honored by the who thing and each of you.

 And lastly, let’s talk Ann Arbor and Mott food.  I actually just figured out that the big cafeteria is open 24 hours.  WHAT!?!?!?!  Why did it take me 12 days to figure this out, I have no idea.  I usually just like going to the small cafeteria closer to us because they still have good food and personal pizzas.  BUT and this is a big BUT, the big cafeteria has frozen yogurt.  I love ice-cream and frozen yogurt is totally doing the trick while we’re here.  I actually get a punch on my M-Health card for the frozen yogurt and after I fill up my healthy card I get…wait for it…a bottled water…and $2 off my next purchase.  Hahahaha.  Now there are no oreo toppings or anything, but I can get almonds, crushed peanuts and dark chocolate chips.  It works.

The staff here at Mott and Aimee have shared lots of good food places with me.  If you’re ever in the Ann Arbor area here are some of our favorites so far:  Zingerman’s Deli, Wings Over Ann Arbor, Palm Palace and Tios.  Insomnia Cookies and Evergreen Restaurant of course, but I told you guys about them already.  If you’re from the area or have been in the Ann Arbor area and have some good food places, please share.  I’d love to hear about them and give them a try.

Sidenote:  Tios had THE.BEST queso.  Josh had actually just gotten back from picking up food from there the night Everett went into cardiac arrest.  When we finally ate some 2-3 hours later, our tacos fell apart and I was worried PTSD would surely have ruined queso for us for life.  Thankfully, we reheated the queso and found out all was still right in the world and our love for queso and all Mexican inspired food was still burning bright.  End sidenote.

Okay, that’s it for right now.  Everett is still rocking on through his day.  He’s working really hard on his breathing and we’re crossing all our fingers and toes we can get this kid vent free this afternoon.  Thank you always for the prayers.

Update: Day 12 & 13

Yesterday was just a day of rest for Everett.  With the news of his atrioventricular valve now leaking worse than before surgery everything was put on hold.  His team still worked on weening meds he was put back on with his most recent scare and he still did sprints to work his lungs.  I felt like he really needed the rest.

His night was very uneventful as well.  I slept some more.  It’s been nice getting more than 2-4 hours of sleep at a time.  I feel like my body definitely needed it.

Today we kicked off the morning with an echo.  His team wanted to make sure they we’re really seeing what they thought they we’re on his previous echo.  I sent out a few quick texts and we prayed.  We prayed and prayed that the echo would be wrong.  That when they reviewed the results only God would be the explanation.  All morning long and during the day I told God, “You can do this.  You can change the results even right now.  You can heal his little valve and make it strong.  I believe and when I don’t help my unbelief.”

They sent him down to the cath lab around 10:30 for his PICC line.  It never gets easy no matter how small or minor the procedure is suppose to be…I always tear up.  Every.Single.Time.  I waited out in the waiting room and read my devotion from yesterday and I felt seen.

“Then let afflictions come, for God has chosen me. Poverty, you may walk through my door, but my God is already in my house, and He has chosen me. Sickness, you may intrude into my life, but I have a cure standing ready – God has chosen me. Whatever occurs in the valley of tears, I know He has chosen me.”    -Charles Spurgeon

I waited for what felt like forever.  Ashley actually went home early yesterday morning so we text each other photos of our lunch. 🙂  Finally got to get back to him and he did great.  I kept asking every nurse or fellow or doctor who came by if they had heard about his echo results yet, but still no word.

Finally I got to talk to one of the doctors.  I will say I like when doctors and nurses are blunt.  It may sting a little bit, but I would rather not sit and wonder.  I just want the truth.  I told this doctor that right up front.  Everett’s echo from this morning revealed that his AV valve is in fact leaking severely again like they saw yesterday.  Dr Bove and his team have all weighed in and at this point they all feel the next best step is to try and get Everett healed more before another surgery.  His little body has just been through so much.  They plan to extubate him tomorrow morning and then start working on weening his ICU meds.  They are concerned he won’t be able to ween off his ICU meds and if they cannot get him extubated and weened then he’ll likely have another heart surgery very soon.  If they can get him healed and weened off meds then they’ll send him home and start working on a plan for his next surgery.

I’ve had lots and lots of responses from friends and family about his current plan.  I’ve been asked how I feel about it and truthfully I don’t even know really what to think about it as a whole.  I know I hate that his AV valve is now leaking more than before his repair.  I know I miss Everett desperately.  I cry and cry over the light missing in his eyes and the quietness of his room and that I cannot hold him or hug him or kiss all over his little face.  I know our chance to see Everett for who he is again is in letting him heal.  And then I also hate thinking about getting him back and then doing this all over again.  I keep asking God to give his team wisdom and discernment.  I keep asking God to just be Himself.

I have cried a lot over the past few days.  I’ve also said the F word a lot over the past few days.  I go from okay to deep grief and sadness to anger and then all over again.  I question our every parenting move we’ve made for Everett.  I sit and just wonder what in the world is God up to.  I also have a deep reverence for the fact that God is God and I am not.  I do believe He owes me NO explanation and I don’t necessarily think He’s sitting up in heaven orchestrating this chaos for Everett and his little body, but I do know our past 13 days does not surprise Him.  Sometimes crap things just happen because we live in a very fallen world.

I read another devotional today and actually on the wrong day by accident, but I was immediately struck by one of the verses.

“…and when they lifted up their eyes, they saw no one but Jesus.” Matthew 17:8

So that’s where I am right now.  When I lift my eyes up from the okayness or the sadness or the grief or the pissed off-ness, I know I still see Jesus.  I might not understand it and I might not like it, but I know He is still here in it with us.  It is crushing to see our son so sick and so sad and I know He is heartbroken with us.  I know He loves Everett far more than I ever could.  I know He loves me.  And I know in this fallen world He alone is good.  I am holding tight to these truths and trying to remember to lift up my eyes.

Thank you for the continued prayers.  It has been absolutely astounding to see and feel how God has used you to shower us with love, encouragement, support and prayers.  We are forever grateful.