Mele Kalikimaka!

Mele Kalikimaka!  Fröhliche Weihnachten, Feliz Navidad, Joyeux Noël, Merry Christmas!  

It's been an emotional past few days as we reflect on all that has happened over the past year.  The contrast between NomiAnn and Papa Kay's beautifully decorated home and the Cardiac ICU is stark.

 

We are so very grateful to be celebrating as an entire family this year.  Strangely enough, though, the holiday doesn't feel quite as light-hearted as before.  We are whole, but changed.  There is still a sense of loss.  A year ago we marveled at our family's good fortune of physical and mental health.  Much has changed since then, both for Annika and others.  We feel more deeply the sorrow of others who have experienced loss.  We still sing "Joy to the World," but the joy is different--deeper and weightier--tempered by trial.

Blogging may not be the most typical Christmas activity, but I like it because it fills my heart with feelings of family and gratitude.  Blogging about our Make-a-Wish trip to Hawaii is extra special because this week was so tender.  Not only was Oahu wonderful, but the entire week was flavored by a deep awareness of the goodness of humanity.   Everywhere we went, we felt gratitude for the kindness of strangers who made this tender week as a family possible.  It was a week of healing, togetherness, and joy.

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Interrupting this blog post to make a most unexpected and SPECIAL announcement!  Around 7:30 pm on Christmas Day, there was a knock at the door.  Outside on the porch, we found five hooligans waiting with big noses.

There are no words to describe the joy we felt at seeing the Wells Family!  Best surprise EVER!  (Well, right up there with their surprise last decade.)  

The amount of love that is wrapped up in this surprise visit is immense.  Their flight got cancelled, so they turned around and DROVE through the night all the way from Long Island!  I want to tell more about it, but I want to be part of this magical moment even more.  Blogging can wait.  Jeanette, Janet, Katelyn, Alesia, and Gregory, thank you!  We love you!   Mele Kalikimaka, world!  Wishing all the joy that comes from being with family.

Aloha!

If you read the last post and are wondering, Annika's procedures all went well.  Hooray!  She is now napping in the Cardiac Care Unit, so I thought I'd take advantage of the chance to catch up a little on blogging.  I could skip back to October, but I think I'll keep going with Hawaii.  More fun, anyway!

Arriving in Honolulu, our family was greeted in the airport with beautiful flower leis.  What more could a girl wish for?

The Hawaiian "Spirit of Aloha" has been delightful to experience.  From the man driving the airport golf cart to the woman helping us choose our mochi, we have felt so warmly welcomed.  So much is wrapped up in the meaning of Aloha--hello, goodbye, warmth, hospitality, and love. Now that's worth a shaka!

Honolulu was vibrant on a Friday night. Hungry from our travels, we were able to find poké right by our hotel.  Annika's first question was, "Do you have octopus?"  Imagine her delight when she discovered that yes indeed, they did! Bucket list wish achieved with her very first meal!  The verdict?  She doesn't actually like it very much--too rubbery.  But I love the fact that she tried.

As for our room in the Sheraton Waikiki, it was faaaaancy.  With two adjoining rooms, Annika actually got her own bed.  (She often ends up in a sleeping bag on the hotel floor.  Now there's a wish come true!)

Waking up in the morning, we discovered how dreamy our rooms actually were.  Overlooking the ocean and Waikiki beach, it was hard to believe it was real.

Annika spent a good long while gazing out at the water.  All of the sudden she started to squeal with SO much excitement.  Sure enough, she'd spotted a sea turtle right in front of us, a little ways out from shore.  It had swum beneath the surface by the time we photographed it, but you can see its outline in the pic below.  If you go straight out from between the two logs, it's the circle in the lighter section of water.

Waikiki was all decked out for Christmas, including the sea turtles!  Still, it felt strange to reconcile palm trees and tropical weather with Christmas trees and carols.  I think I could get used to it.

 Much more to be said, but I think we're getting released from the hospital soon  (yay!) so I better focus.  Love to all!

Waiting....

I feel like I have composed way too many posts from the Ronald McDonald Room at Primary Children's Hospital.  Definitely more procedures this year than I anticipated!  But I also feel like writing is my way of coping, and right now I need to process.

Today is Procedure Day for Miss Annika.  

Having thoroughly enjoyed her trip to Hawaii, it's time to get back to the business of healthcare, squeezing in whatever is necessary before the new year.  We were asked to report to Outpatient Surgery at 5:45 am in order to get prepped for three to four different procedures.  Glad we live close!  First order of business was a micro-laryngoscopy/bronchoscopy with ENT Dr. Park, just to confirm that her airway is clear of the granulation tissue that accumulated there last spring.  Check!  That procedure finished quickly and everything is fine.

Next up was a visit to the cath lab, overseen by our friend and surgeon, Dr. Mary Hunt Martin.  When Annika saw Mary Hunt, she immediately greeted her with the biggest hug and asked how her dog Comet was doing.  Best of all, Mary Hunt seemed just as delighted to see Annika.  What a huge change from when Annie was brought into the cath lab on Christmas Eve nearly a year ago!  The purpose of the cath lab is to take pressure measurements of the different chambers of her heart, hopefully ruling out restrictive cardiomyopathy as a diagnosis.

The final scheduled procedure is being overseen by our electrophysiologist, Dr. Mary Niu.  Dr. Niu placed Annika's ICD (Implantable Cardiac Defibrillator) last January.  Over the year, we've discovered that Annika's ICD often needs to function as a pacemaker as well because her cardiac meds drop her heart rate.  Right now the ICD paces her left ventricle directly.  In an effort to pace her in a way that better replicates our heart's natural electrical conduction, they are placing an atrial lead today as well.  This sounds fairly minor (just stick in another wire), but it actually means that they will have to surgically remove the first ICD and put in a new one.  That means a pretty sizeable incision right across the earlier keloid scarring and eight weeks of restricted movement.  It also means a pretty lengthy procedure--at least three hours.  

And then, as a last minute bonus add-on, they told us this morning that they will try and squeeze in a cardiac CT scan since she will already be sedated with a large bore IV.  Way too much excitement for me to wrap my head around.  We are already three hours into the final procedure--four and a half hours since surgery started.  Even though I know she is in great hands, I am an anxious MESS waiting for news about my baby!

All in all, Annika handled the pre-op really well.  Perky and talkative, she chatted with all the doctors with an obnoxious amount of enthusiasm for 6 am.  She was a little concerned about saying good-bye to "Fred and George" (the name of her first ICD)--understandably so.  We suggested she name her new ICD "Ron," but we'll see what she decides.  She likes Primary's and is excited to both play Minecraft and have them deliver her food on a fancy tray.  She wasn't even very sad about missing her school music concert or class auction.  I suspect she's going to feel a bit more uncomfortable than anticipated, but she's a tough cookie.  Fingers crossed for a simple overnight stay, then back home tomorrow!

Away in a Manger

 Last Sunday we had a special sacrament meeting where church members were invited to come up, share a favorite Christmas hymn, and then we all would sing it together.  It's amazing how music always brings such a special spirit, especially when focused on our Savior.

I wanted to share a hymn but we ran out of time, so I thought I would here instead.  

I've long loved the Christmas carol, Away in a Manger.  The imagery is beautiful and the melody sweet.  I like how there are multiple versions, including the Primary song with it's additional chorus of sustained asleeeeeeep asleeps.  I can easily imagine a mother singing this to her children on Christmas eve with hopes that they will finally close their excited eyes and rest.  The final stanza is particularly tender when all who sing address our Lord directly.  "Be near me Lord Jesus, I ask thee to stay Close by me forever, and love me I pray."

But this is where the hymn stopped being my favorite.  "Bless all the dear Children in Thy tender care, and fit us for heaven to live with thee there."  I have such intense memories of sitting in the small auditorium/chapel of Primary Children's last Christmas and sobbing while this carol was sung.  While I certainly desired blessings for my child, I did not want to send my daughter her to heaven.  I desperately wanted her here; I needed her here.

At the time I wondered if I would ever feel joy at Christmas again.

Over the past year I have had a lot of time to reflect on that moment.  It marks the beginning of a personal faith journey where I've had to stop and take a hard, cold look at the reality of death, facing not only my own mortality, but even more challenging, that of those I love.  I prayed soooo hard for God to save my child.  It's easy to see the blessings and miracles since everything worked out the way I wanted.  But what if it hadn't?  Could I still have faith?

So many times throughout the year I have stopped and thought, how could I ever do this if Annika were not here?  Could I decorate the tree?  How would it feel to pull out gems like this ornament, created by her just last season?  

What about her hundred stuffies?  The ward Christmas party?  And for that matter, what about attending church if she had passed away on those very steps?

In these moments of reflection, I worry about my other children.  They too deserve a happy childhood with a mother who is whole and present.  Would I have completely fallen apart?  (The answer is yes, most assuredly.  As it is, Brooklyn rightly observed that I cry a lot.)  Thinking about them, I feel even more gratitude for Annika's miracle.

But what about the families who don't receive the blessings they so deeply desire?  Does God love them less?  Certainly not.  If Annika had died, could our family move on?

For me, the answer lies is faith: an active faith that is so desperately needed that it becomes tangible instead of an ephemeral concept.  If I truly believe, then I must accept that death is just as essential as birth for God's plan of happiness.  Do I have faith that God is present and heaven really is there?  Do I trust God enough to believe that he loves my children as much as I do and will care for them even better than I can?

These questions are big, but I'm making progress on this faith journey.  I want my children to know that should the unthinkable ever happen to any of us, their mom will not fall apart (at least not for too long.)  We have been sealed as a family and made covenants in the temple that bind us together beyond this life.  The grave is not the end.

We all can feel hope--hope and joy--because of the birth of a babe.  Because of Jesus, we all will live again.  Away in a Manger is once again my favorite carol.  Be near me Lord Jesus, I ask Thee to stay close by me forever and love me I pray.  Bless all the dear children in thy tender care.  And yes, please, fit us for heaven to live with Thee there.

A Wish Come True

December 1, 2023: Wish Day!  After months of happy anticipation, the Wish Wizard is granting Annika’s wish to go to Hawaii today.  Looking back, it’s hard to fathom all that has happened over the past year.  12 months ago, I never would have imagined that our family would gather together for a Make-a-Wish trip.  Even if I had imagined it, I never could have imagined that it might actually be a joyful moment.  Yes, Annika has been terribly ill, and yes, we still have a challenging road ahead of us.  But this week is a celebration.  We are celebrating Annika’s strength, her courage, and the miracle of life.

Even though this week is all about Annie, I’m so glad that all of our other kids are here with us.  They too have walked this difficult road alongside their sister, showing compassion, love, and unparalleled strength.  Uncomplaining, they made space for the demands of her broken heart, even when it felt unfair and they had needs of their own.  I think this poem, written by Brooklyn in her freshman English class, gives a small glimpse into how difficult this has been for them as well.

Strong

My dad’s
voice 

It’s not
beating 

My mom’s
scream 

We’re all
leaving 

A small
room 

Scared
siblings 

Whispered
prayers 

Please 

Please

Tears fall like the silent snow
As my little sister codes 

Minutes feel like days
but I’m just grateful
for every minute that she stays,
her fragile life not gone… yet 

“Can we help?” The nurses try
We’re okay,
just tell me she’ll be okay
but don’t lie

I wish their silence would stop my heart too

I drive the one mile
my sister flies
Helicopter blades
whip in the sky
while my mom’s
in the passenger side 

My mind is stunned, blurred
but it’s clearer than hers
How can you think
when your daughter’s not hurt
but still broken 

Waiting interrupted by a buzzing phone
Aunts, uncles, grandparents all anxious
but I can only tell them how no one knows
and hang up before my voice breaks 

I call my brand-new boyfriend for comfort
but he’s sobbing on the side of the road
and I’m reassuring him she’ll be fine
while he adds himself to my emotional load

This is all wrong
I’m not the one who’s supposed to be strong

Help me be strong
Except no, don’t,
not one prayer for me
Help her be strong
I’ll be fine, please just help her

This is all wrong
I’m not the one who’s supposed to be strong

Brooklyn, Talia, and Eli, we see you.  We love you.   Thank you for carrying your sister. (And her backpack.)

There have been so many miracles getting us here.  Obviously there are the big ones, like the fact that Annika survived. Not a day goes by without our feeling grateful for the compassionate and skilled providers that saved our daughter.   We are likewise overwhelmed when we think of the generosity of the many people who donate to Make-for-a-Wish and grant wishes to children like Annie.  This year Make-a-Wish Utah is one of the organizations featured in our local Giving Machines.  It’s humbling to be the recipient of a gift from the Giving Machine we have given to in the past.  We are so grateful.  Annika’s Wish feels like a balm of comfort at just the right time, bringing healing as we approach the difficult one-year mark of her cardiac arrest.

But there are lots of little miracles that have gotten us here too!  We feel blessed that Brooklyn is included as a family member with Make-a-Wish.  Siblings are comped participants through age eighteen, but not beyond.  We timed this wish just right, two weeks before Brooklyn’s nineteenth birthday.  A tender mercy there!

We feel blessed to have a decent flight home.  Earlier this week I called the airline to ask about our luggage allowance.  While on the phone, I realized that we were booked for a completely different flight than the one printed in our Make-a-Wish itinerary.  Instead of leaving at eight in the morning, it was departing as a red-eye at 11:30 pm the night before.  With two long layovers, the overall flight time would be more than nineteen hours.  In a panic, I contacted Make-a-Wish, and they were able to get us booked on a red-eye flight for the following evening with only one short layover.  In the end, this change gives us another full day in Hawaii.  I figure God just really wanted us to have the extra time as a family.  Mostly, I feel so grateful that we discovered the error when we did.  Our group took six of eight remaining seats on the new flight.  It would have been so easy to show up at the airport thinking we were two hours early, only to discover the flight departed six hours prior.  While it would have made more sense to look up the baggage allowance online, I’m so grateful that I called instead.  A lucky break?  Perhaps.  But I see it a little divine orchestration.

A few more hiccups since: they entered my birthdate wrong when issuing the ticket, so I had to go back to the ticket counter after waiting through a super long line in security.  Meanwhile, Jason and the kids had their hands full with all of the carry on luggage and backpacks.  Eli was managing two roller bags on the escalator when one of them got away from him and went crashing all the way to the bottom.  Oops!  At least no one was injured.

Then, our flight to Phoenix was delayed thrice—once because flights were backed up at the Phoenix airport, once because they had to de-ice our plane (it started to snow while taxiing on the runway), and once more because another plane had to make an emergency landing.  But hey, on the positive side, our flight attendant was Lehi, the father of one of Talia’s friends.  We really enjoyed getting to chat, plus he taught us that if you dip Biscoff cookies into orange juice, it tastes like key lime pie.  Try it some time—he’s right!

The first flight was delayed enough that we missed our connection to Honolulu.  But hey, they were able to rebook all four of us on another flight four hours later—another blessing on a full flight.  In the meantime, we were able to eat some really delicious Mexican food at the airport—best shrimp I’ve had in a long time!  Then Talia sent us on a scavenger hunt through the airport that included taking a picture with a dog and finding Chic-Fil-A.  Check and check.  All things considered, it was a pretty fun flight delay.

And so, as we fly across the ocean on our way to Honolulu, we are mindful of the miracles that brought us here. With the craziness of December present, hug your loved ones close and enjoy the gift of being together.