A blog about the life of the Balentine family: Adam, Amy, Teddy, Simon, Thomas, Peter and Goldie

Monday, May 21, 2018

Simon's Death





We are in the final stretch of #simonsgiftoftime bereavementcampaign 2018 and we are about $1,400 short of our revised goal for a second bereavement cradle.  I am urged to share (again) publicly Simon’s death in an effort to remind friends and family why these bereavement cradles are important.  While we were able to bring Simon home, so many families leave the hospital with empty arms.  Would you consider donating to serve the bereaved family? 


Tonight, we will celebrate Simon’s fourth homegoing anniversary.  We’ll probably watch his celebration of life video and talk about what it was like to usher our son into the Kingdom.  Adam’s been fasting all week so we are looking forward to having a very late meal at 10:17pm – chicken tetrazzini and a glass of champagne.  

In a world where death is hardly spoken about - though it happens to all of us, I feel compelled to share (again) some intimate moments of Simon's life and death with hopes we each walk more closely with one another when experiencing grief and the death of a loved one.  So many have run toward us and supported us and I am so thankful for this.  I encourage you to do this for others - even when you don't know what to say, say nothing and just be there when death occurs.

I easily recall the weight of his tiny body in my arms - this feeling is something that will forever be a part of me.  I remember his scent well.  Adam and I changed every diaper together.  While we changed his diaper, we swabbed his mouth and often cleaned his eyes to with a warm washcloth. We would check his feeding tube for air bubbles and warm is milk for a feeding tube meal. Adam and I were awake for about eight days straight.  We caught naps here and there (thanks to our moms!) but for the most part, we were awake not wanting to miss a moment of Simon's life.  The evenings and nights were our favorite time with Simon.  Around 8:30/9pm, I'd go to our bedroom and try to catch a few hours of sleep while Adam and Simon had alone time.  This time seemed precious to Adam.  Simon, like many newborns, had his days and night flipped up-side-down.  He was awake from 10pm-2am most nights and he was alert!  Adam discovered he loved lights and they spent time standing underneath our overhead lights swaying back-and-forth while Simon enjoyed the light.  Around 1:30am I would take my shift which would typically last the rest of the night into the morning.  I slept mostly straight up and down holding Simon at an angle in my arms with a mountain of pillows surrounding us.  I'd drift off to sleep and often startle awake to see if he had died in my arms.  For some reason, I thought he would die when all three of us had drifted off to sleep in our bed.  I was okay with that.  But that’s not how Simon left us. 

God gave us exactly seven days plus twenty-two minutes to soak Simon in with our eyes, to love him deeply and to send him home.  On his one week birthday we sang "Happy Birthday" to him – me barely able to get the words out of my mouth knowing he was fading right before my eyes – he died 22 minutes later.  We read scripture over him.  After we sang to him, my mom, who was at our house spending the night, decided to go to the kitchen to do dishes so we could be alone with Simon.  I'm unsure how she knew, but she encouraged us to stay downstairs while she cleaned up the kitchen.  We were going to go upstairs and get ready for bed with Simon, but decided to stay put on our couch.  Around 10:15pm, we could tell the end of Simon’s life was coming – I yelled, “go ahead and go, Simon” and "please take him God" while Adam coached his son one last time saying, “Simon, if you see Jesus, reach for him, grab him.”  Adam held him for his very last breath which was quiet and peaceful – and in one big swoop, the room was still and we knew Simon was gone.  Agnus Dei played which was completely fitting, given that Agnus Dei means lamb of God - Simon was sweet and innocent just like a lamb, and now he was meeting the true Lamb. The song continued to play and Simon was indeed gone from this earth. Adam fell to his knees over Simon and wept.  I’ve never seen my husband collapse like this before and I am certain I never want to see it again.  We prayed over Simon and took his sweet, sweet body up to our room to change him into a special outfit we had chosen to have him cremated in.  It looked very similar to the one he wore nearly daily.  We changed him, reswaddled him and placed him in his bassinet to sleep for the night.  We knew we simply needed to be with Simon for a little while longer - we needed time to let his death become final and real.  Adam and I didn’t talk much about our plan – we just laid him down in his bed for a final rest in our home.  We slept and actually slept pretty hard because we had not slept in over a week.  I awoke, cried and remember wishing I had spent another sleepless night holding Simon.  I walked across our bedroom to look at our boy, honestly, I was a little worried about what my eyes might see.  I saw nothing but Simon's body knowing he was in full glory.  I’m thankful we kept him overnight.  It was so important to see his body fully fade before calling hospice and our funeral director.  I didn’t realize it at the time, but I needed to know that he was truly gone from this earth prior to letting his body go – something that the Bereavement Cradles we fundraise for provide for families.  Teddy woke up and I recall both Adam and me walking into his room that morning.  Teddy moved forward, business as usual, as he should.  It actually felt pretty good to have something feel normal on a day that was so uncharted. Oh what happiness you bring to us, Teddy.  Thank you my sweet boy.


After breakfast we called hospice to let them know we had said goodbye to Simon the night before and that we were ready for them to come to our house.  They arrived around 11am or so.  I rubbed Simon's lotion on his forehead and then kissed his sweet head.  I hate death.  Adam carried him out of our bedroom, down our staircase and out of our front door.  Adam has said many times this was the hardest thing he’s ever done in his life.  With me by his side, Adam walked Simon out of our front door on May 22 around 11:30am to say our final goodbye - I now prefer to think of it as a "see you soon!"  Simon was swaddled with a little KU sock monkey, which was a gift from his grandma Mimi.  There was a gentleman with a puffy red beard and dark sunglasses in a white van who was taking our son.  He assured us he would take care of Simon.  I can remember just wanting to scream at the top of my lungs – NOOOOO! He can't go with you and be alone in that van! Give him back!  He’s mine!  But, I didn’t.  Although I think I had every right to.  The man pulled away with our son and drove off.  We stood with empty arms and hearts - completely and utterly out-of-this-world wrecked. 
God was with us every step of the way through Simon’s life and especially the days following.  He continues to be.  We are not forgotten.  I felt his Holy presence many times during and after Simon’s life.  Through the still of the room after Simon was gone.  Through Teddy waking on May 22 conducting a business as usual sort of day.  Through the mere fact that my knees didn’t buckle and I completely lose it in front of our house on May 22 saying goodbye to Simon’s earthly body.  Through Teddy swinging and playing with his dump truck in the backyard after we reentered our home with empty arms.  And through the wind as it wrapped around my shoulders whispering God’s goodness and through both scripture and my mind reminding me, it will be okay, you will see him again.

Death where is your sting (1 Cor 15:55-57)?  Well, I promise you, death does sting and hurts like hell and will continue to likely for the rest of my life.  But the sting won't last because of Christs' great sacrifice for you and for me. Jesus is victorious over death - we can be too. I cling tight to the hope and promise of Heaven where one day all things will be made new and set right by our Creator.  Until then, we do our best on this earth to experience heaven here.





Hello my darling, Simon.  What are you doing today?  What beauty do you see?  Hold tight to Thomas as we wait to be reunited.  I long to see you, feel you, and smell you again!  Until we place eyes on each other again, Simon.  I love you. ~Mommy

Adam, I tell you that you are my hero and I am not kidding.  You are.  Thank you for bravely holding and ushering our son into Jesus' arms straight from your arms. I was really scared to do that and I am thankful you had the honor.  I brought him in, you ushered him out.  How beautiful.  How complete.  




Wednesday, May 16, 2018

5 more days...one more cradle?




Monday, May 14, 2018

#simonsgiftoftime2018

Simon Adam Balentine 
May 14-21, 2014
Tonight we begin the fourth anniversary celebration of Simon’s life.  On May 14, 2014 at 9:55pm, we welcomed Simon Adam Balentine into this world.
Year after year, my mind travels effortlessly back to the moment Simon was born.  We weren’t sure if he would be alive as we decided to forgo fetal heart monitoring during labor.  We thought if he died before/during labor, it might be hard for me to continue to labor knowing his soul had been taken already.  He was moving at birth, arms and legs squirming – I didn’t even have to ask if he was alive.  I could see, he was!  Dr. Amy Carter placed Simon on my chest and all of the prayers from the previous five months had been graciously answered in that moment.  He breathed!  I shouted praises to God thanking Him for his mercy.  It wasn't long after his birth that we finally heard his voice.  It was heavenly (this video shares his sweet cries).
Following Simon’s birth, all we wanted was time with him.  It was simple.  We were doing our best in those moments of the unknown to claim joy and celebrate his life. Even if Simon wouldn't have breathed, our plan was the same. We wanted to study him, memorize him, bathe him, smell him, read to him, dedicate him to Christ, sing happy birthday to him, eat his birthday cake, have his big brother Teddy meet him, have his grandparents, aunts, uncles and close friends meet him.  Just show him love and hold his precious body.  That’s what every family wants following the delivery of their baby. That sacred time of grace and glory.
We became aware of Simon's challenges, surrounding his Trisomy 13 diagnosis around 18 weeks gestation, so we had time to prepare for his birth.  However, so many families do not have time to prepare.  Mothers go to the doctor for a regular pregnancy appointment or check in to labor and delivery expecting to deliver their baby and hear the words...

“I’m sorry.  There is no heartbeat.” 




Parents never want to hear these life-changing words, but many do and walk through the unthinkable. The Balentine family and You Made Me Mom, for a fourth year in a row, are raising $4,200 for another donation of a bereavement cradle during the fourth anniversary week of their son Simon’s brief but mighty life (May 14, 2018 at 9:55pm through May 21, 2018 at 10:17pm).

Why do the Balentines ask for support from you:
Just in the US alone, 27,000 parents annually will experience the loss of their baby at birth. Our hope is for our community to support the bereaved family during the initial stages of shock and grief. Once you know there is a need, you cannot unknow it.

Having lost two sons in 2014, the Balentine's passion is to serve and walk through the broken with families who are experiencing a loss of their child. Your tax free donation will be processed through the non-profit 501(c)(3) organization, You Made Me Mom, a support group that Amy leads focused to care for bereaved mothers who have lost babies during pregnancy or infancy. The cradle will be donated in memory of the Balentine’s two sons who both died - Simon who lived one week, and Thomas who died at 13 weeks gestation.

What is a bereavement cradle?: 
A bereavement cradle system is used to cool a baby who was stillborn or died shortly after birth so the baby may remain in the hospital room with the family instead of transferring between the morgue. This support tool grants the family precious, dignified and uninterrupted time with their child so they aren't forced to say goodbye just a few short hours after laying eyes on their son or daughter.

#simonsgiftoftime bereavement cradle testimonies:
The Balentine's have had the opportunity to meet several of the families that have utilized the cradles that YOU have generously helped donate. When the Balemtines walk into this sacred labor and delivery space where a child has died, they are reminded why they do this campaign every year. These cradles truly do give memory making time to these families.

To meet these families yourself, check out these short testimonies of their use of cradles donated through #simonsgiftoftime:
Here are a few key things the bereavement cradle provides: 
-parents have time with baby 
-no transferring baby back-and-forth between the morgue  -extended family time to meet the baby 
-parents can bond with the baby as a family 
-parents can sleep in the same room as the baby  -baby can stay with mom the entire time she is in the hospital memory making that aids in shock and grief 

Costs:
The Caring Cradle system costs $4,125.00 Should we exceed the $4,200 goal, we plan to use additional funds for You Made Me Mom. Here are some of the ways any excess funds would be utilized in support of YMMM:
-website upkeep 
-printed materials 
-support group books for bereaved mothers 
-funding for chapter leaders to meet in person

The donation of this cradle is designated for St. Luke's North Hospital located 20 miles north of our home. The hope is that this cradle will serve families two-fold - by serving in the initial stages of grief through the cradle and by serving the bereaved mom through the You Made Me Mom support group monthly gatherings.

Starting in 2015, this campaign has provided:
-annual operational cost for You Made Me Mom
-4 bereavement cradles in Kansas City
-established You Made Me Mom's 501(c)(3) status
-published You Made Me Mom promotional video
-published You Made Me Mom Helpguide, Known
-published new You Made Me Mom website
-hope to the bereaved mother, family and friends
-served over 300 attendees at monthly meetings and thousands Nationally through the Known helpguide and website resources

Thank you for considering a donation to the bereavement cradle fund. Your donation gives a shocked, grieving family TIME with their baby memory making. 


With Love,
The Balentines -Amy, Adam, Teddy, Simon, Thomas, Peter and Goldie

Dearest Simon,
Happy birthday! Each new sunrise is a day closer to holding you again. You are loved and longed for. We are SO proud of you and SO thankful to be your parents.
Love,
Mommy and Daddy
Tribute to Simon Adam Balentine from Adam and Amy Balentine on Vimeo.

Friday, January 5, 2018

A new year, some new scars



As I was reflecting with Amy on 2017, the theme we had for the year was "scars."  We're all emerging into 2018 with some new scars, but we're thankful for them.  Scars tell a story.  Our stories are ones of healing and grace.  The stories have plenty of hardship and pain.  They also include feeling isolated and frustrated - even scared.  “But we all suffer. For we all prize and love; and in this present existence of ours, prizing and loving yield suffering. Love in our world is suffering love. Some do not suffer much, though, for they do not love much. Suffering is for the loving. This, said Jesus, is the command of the Holy One: "You shall love your neighbor as yourself." In commanding us to love, God invites us to suffer.” ― Nicholas Wolterstorff, "Lament for a Son."  

I'm not huge on New Year's Resolutions.  I guess that is because I don't really believe in self-improvement for self-improvement's sake.  Meaning, I don't believe it is really sustainable to focus on ways to better myself simply for my own self-confidence, physical appearance or well-being, or even career advancement or social status.  If I set a new year's resolution to get a 6-pack (abs not beer), even if I achieved a washboard stomach I know I would be disappointed.  I know it wouldn't be enough.  I can look at old pictures of myself when I was much more slim and fit and working out almost every day, and I now realize that at the time I didn't think I looked good at all.  My mindset during that time was that I was still too fat, or needed to work harder to attain some sort of body image that now I'm certain was not even realistic.  I was focused on pleasing myself by attaining a better body, but it was never enough.  What I really needed was a routine workout for my soul, so I could gain a more healthy perspective on why I was struggling with body image.  I needed a guide and a good word to come alongside me and teach me true humility and a better purpose for my life.  I'm reminded of a C.S. Lewis quote that says, "True humility is not thinking less of yourself, but thinking of yourself less."

In 2018, there are a couple of areas I want to focus on.  But these "resolutions" or goals are only worthwhile if I have noble purpose.  This purpose must be to serve and to love others, as Jesus called us to.  Without that kind of purpose behind a new year's resolution, I believe we're simply on a circular racetrack, racing against someone we literally can't outrun: ourselves.

Two things God has laid on my heart for 2018:

Generosity

  • Have we positioned our finances in a way that allows us to first be generous before we focus on our own comfort?
  • Are we teaching our children to be generous?  Or are they learning that work, money and time are dedicated to us accumulating more stuff and nicer stuff?
  • If I audited my time, and categorized it, would it indicate that I'm generous with my time in service to others?  What can I trim from my routine to be more generous with my time?
  • Do my kids feel like I prioritize other things in front of them?
  • How can I better serve my best friend and the most important person in my life, Amy?

Self-Discipline

  • Am I diligent about managing my schedule?  
  • Do I look ahead enough, and say "no" enough?
  • Do I eat and exercise today like I have a goal of being healthy and active enough to know and be in relationship with my grandchildren?
  • Do I eat and exercise today like I'm focused on serving Amy?
  • If I get a lot of fulfillment and creative inspiration out of writing, why am I not routinely scheduling time to do this?
  • Why can I not finish a book?
  • Am I finding time to rest by having peace and silence, so I can hear God's voice?
I'm sure there are more self-reflective questions to ask, but Generosity and Self-Discipline will be my words for 2018.  Pray for me as I seek renewal of my mind and spirit.

Sunday, December 24, 2017

Christmas 2017

Sharing our Christmas 2017 card with you.  May you find peace this Christmas and a fresh start to 2018.

Love in Christ,
Amy and Adam



Thursday, September 14, 2017

Simon's Home

























Today, we lock up the house where Simon lived for the last time.  I knew this day would come and it would be really tough.  We bought this home the day Teddy was born - literally signed the paper work in the hospital.  We lived so much life in this home.  And God taught us so much.  The true meaning of life and how to live a life well  and whole was defined here.  Our lives and hearts transformed inside these walls.  Simon lived all of his days here and this is probably the hardest reason to turn the key for the last time.  The Holy Spirit gently whispers to me and reminds me that Simon reigns in Glory not inside this home - but I have to say I feel Simon each time the sun washes through the windows of our living room.  The Lord reminds me the arms that held Simon in life and death go with me - both mine and Adam's.  The list of big events in this home come easily to mind.  We brought three new lives home to this house - Simon, Peter and Goldie.  We received the ashes of Simon and Thomas in the entryway of this home.  And felt the Holy Spirit in the living room as Simon took his last breath.  We walked through these doors after Adam's brain surgery and spent an entire month as a family helping him mend - which wasn't fun for Adam but the boys and I have great memories of having daddy home for an entire month.  All of the boys' birthdays have been celebrated here.  Life was fully lived and loved inside these walls.  I will be forever thankful for 448 W. 61st Terrace.

Lord, Thank you for the years and life we shared in this home.  Thank you for Adam who works so hard to provide for our family - he selflessly gives us homes that support our families needs but also serve those who enter our home.  Thank you for binding our marriage inside the walls of this old home.  May our new home bless and honor you, Lord.   Bring people to our home who need rest.  Let our new home be a place for peace, vulnerability,  laughter, love and puddles of grace.  May it be a home of respite for many and may I see Simon's sunshine through our new windows. ~Amen.

Saturday, September 2, 2017

Welcome Marigold Joy

In the quiet of the early morning of Wednesday, August 30, 2017, I realized I was in labor with our fifth child. Adam called his mom and she came to our house to be with Teddy and Peter, who were asleep.  After laboring at home for a couple of hours, Adam and I headed to the hospital where our first baby girl was born at 38 minutes after we arrived to the hospital - even faster than Simon's delivery.  After having four boys in a row, the shock of a girl took about two days for us to get used to.  What a beautiful surprise.
Marigold Joy Balentine
Wednesday, August 30, 2017 at 6:08am

Please welcome Marigold "Goldie" Joy Balentine!  Goldie adds a sweetness to our lives that I didn't know we were missing.  Teddy is completely smitten with Goldie and Peter, well he likes her but certainly doesn't like his rank in birth order changing.

The miracle of life that happens in the holy delivery room still has me in awe.  Life brought forth - in creation with God and my best friend.  A baby who breathed and cried!  Safety and good health for both mommy and baby.  Transferring from delivery to mommy baby floor.  Then leaving the hospital WITH my baby.  I am familiar and know so many others who have left without their baby.  Mothers who have left without their uterus.  Lives changed with the complete unexpected happening.  I can hardly walk through these first days of new life with Goldie without thinking about where we have been and where so many of my You Made Me Mom friends have been/currently are.  Our perspective forever changed and I am grateful for our story of life, loss and our great Savior who sacrificed and reigns.  Goldie doesn't replace our losses in any way but certainly feels like a kiss on the forehead from our Lord.

Lord, Thank you for this life.  I see your fingerprints all over my life and I can't believe the gifts you've entrusted me with.  Use my life to reflect your Light which consistently points back to you.  Let Goldie know you and trust her life with you.  Amen.

Big brothers Teddy and Peter meeting baby Marigold for the first time!



Big brothers moving baby sister to mommy baby floor.






Headed home.



Is this how you do the headband thing?!  New to the girl mom thing!





Marigolds from the Jacksons


Day four with Goldie. First morning with the whole family together! from Adam and Amy Balentine on Vimeo.





Monday, August 21, 2017

Royal bloodlines

I recently met with a brother and sister that I serve with on a non profit board.  I love them and truly view them as my brother and sister.  I am different than they are, in that I have white skin and they have brown skin.  But we share so much.  In fact, a brief internet search of "how similar is human DNA" reveals from multiple sources that we are 99.9% similar in our makeup.  More important than anything, we share a conviction that the Bible is true and accurate.  Since we believe the Bible is true and accurate, it means we believe we truly are brother and sister - not just theoretically - but that we actually came from the same origins.  Not only that, but we also have royal bloodlines.  These bloodlines give us a birthright, and inheritance, of victory over death.  This is an audacious promise.

This is also the only thing that I've found that can overcome the ugliness, the racism that blows through the world like a hurricane.  Nothing brings hope like God's promise.  Nothing else will convince you to love your neighbor unless you believe they have the same birthright - the same royal blood - that gives you a claim to inherit a kingdom in this world and in eternity.

I wrote this for our board meeting in the wake of our country's latest racist hurricane that left carnage and wreckage to sort through.  I was inspired after reading this article that Tim Keller wrote.
--
Acts 17:24-31

24The God who made the world and everything in it, being Lord of heaven and earth, does not live in temples made by man25nor is he served by human hands, as though he needed anything, since he himself gives to all mankind life and breath and everything26And he made from one man every nation of mankind to live on all the face of the earth, having determined allotted periods and the boundaries of their dwelling place, 27that they should seek God, and perhaps feel their way toward him and find him. Yet he is actually not far from each one of us, 28for
"'In him we live and move and have our being';
as even some of your own poets have said,
"'For we are indeed his offspring.'
29Being then God's offspring, we ought not to think that the divine being is like gold or silver or stone, an image formed by the art and imagination of man. 30The times of ignorance God overlooked, but now he commands all people everywhere to repent, 31because he has fixed a day on which he will judge the world in righteousness by a man whom he has appointed; and of this he has given assurance to all by raising him from the dead."

My thoughts and reflections on the pieces I’ve underlined above:

"...does not live in temples made by man..."
Statues, buildings, flags – these are not the dwelling place of God.  These are of the world, and thus should not be worshipped.  These can crumble, or they can remain.  These things are but dust, and shall return to dust as sin permeates all they are and will force them to decay one way or another.
"...all mankind life and breath and everything..."
We are equal.  Equally created and equally sustained by the creator.  God shows no favoritism in that he equally gives life and breath to all humankind.
"...from one man every nation..."
We all came from the same origin.  We are truly brothers and sisters.  Although we look different, we share the same DNA.  The genetic difference in humans is miniscule - .1% on average.  We fight about the differences that are on the surface, because we’re all quite literally made the same.
"...we are indeed his offspring..."
We are all sons and daughters of the King, the only true King, and therefore share ROYAL BLOOD!  We are heirs to the kingdom!  Our birthright, our inheritance, is heaven!  But we can sell our birthright for a cup of soup.  We can trade our royal name for membership in other groups that mostly accomplish in dividing us while disguising it as unity.  The groups only unify the sub group and paint us into corners.  These sub groups only water down your ultimate identity as royalty, and leave us longing to claim our rightful place in the kingdom.  Do we treat one another like fellow heirs?  Are we respectful of all that share our royal lineage?
"...he will judge the world..."
Take a sigh of relief because you don’t have to be a judge!  You may feel true rest and accomplish true rest, because your judge is merciful and just.  Your judge doesn’t Tweet, or hold press conferences, or follow the wave of popular culture…. He doesn’t even watch the news (fake or not)!  He judges with complete and accurate information only.  He treats all as equal kingdom citizens, and equally grants all the ability to overcome death if they follow his simple laws: love God and love your neighbor.  What a ridiculous promise from our judge!




Thursday, July 27, 2017

The Sweet Aroma of Suffering

It’s in the air, a smell I know so well - 
The sweet aroma of suffering.
Water gives life and it kills.
Fire gives warmth and it burns.
We become mothers and fathers;
And this means we can reach the stars.
But it also means we can go low - 
Lower than the darkest depths of the ocean.
It’s a familiar but not comfortable place.
It is memorable but not desirable.
The smell reminds me of my pain.
Only one person waits for me there -
With scars on his hands and feet,
And my name tattooed on his heart.

The sweet aroma of suffering.

Floods.  Cancer.  Lawsuits.  Lost business.  Pain.  Scams.  Politics.  My longing for Eden - an un-corrupted world - grows as I experience the world around me.  I need to stay in a place of empathy or I fear I might become cynical.  The cynic in me says, "Worry about yourself."  The voice of Jesus says, "Be my hands and feet."  Eden will return.  It will be restored.  That's the promise, and the only thing that brings me hope as the things of this world erode.

Sunday, June 25, 2017

This has been hard

This has been hard.  I’m only 4 months and 22 days removed from having the back of my head split open from Chiari Decompression surgery.

There were a couple of weeks in May that were easier than others where I felt like I was healing and I was going to be OK.  It felt like the symptoms that I suffered with before weren’t going to come back.  When people asked me how I was doing I’d say, “I think it worked.”  Well, now I just think it is better, but not fixed.  But I still don’t really know.

I have intense fatigue that usually sets in with a pain episode.  When the fatigue sets in I can barely keep my eyes open.  This usually happens at least once a day – usually mid-afternoon.  I try to compensate with it by having caffeine, but I feel like that just delays the fatigue and makes my body react in other negative ways.

I lost a bunch of weight after the surgery.  That was mainly due to the fact that I just couldn’t eat much.  My esophagus was in bad shape from being intubated, and so were all those little muscles in my neck and the back of my head that were cut open so chewing and swallowing weren’t my favorite things to do.  All the weight I lost is back (and then some).

This is a reminder, at least for me, that we just don’t know what people are facing in their lives.  I go to work.  I get stuff done.  I still smile.  I have successes and failures.  I play with my kids.  I work in the yard.  But occasionally I feel like I’m being tortured in a prison of pain.  Nobody can see it.  Nobody can feel it.  And as the scar has healed on the back of my head, many will never know the journey I’m on.

This surgery, this recovery, and this pain have opened me up to explore my issues in new ways.  Ways I didn’t plan on being opened up (quite literally and figuratively).  I was active before.  There were times where I was in great shape!  I worked hard in the gym.  I’ve actually been exercising regularly since my youth.  I used to train to stay in shape for sports, and then this translated into some great habits that have lasted through the rest of my life.

For the last year, I had to hit pause on exercising.  My arms and shoulders have continued to deflate, as the inner tube around my waste continues to inflate.  This has been a major ego check for me.  I had no idea how much pride I put into being active, strong and in shape.  I had no idea how much I loved working hard, burning calories, getting stronger and then seeing the rewards of all that hard work in my body.  I was idolatrous, prideful and ungrateful, and Lord I’m repenting of that now.  What a gift it is to be able to exercise and pursue good health – and do it pain free. 
So now I’m wondering what my new normal looks like.  I think there’s a good chance that I continue to improve and maybe the head pain I’m still having is just from healing.  But I’m thinking I may live with pain for the rest of my life. 

Something mysterious happened during my surgery and I came out of it with nerve damage in my left shoulder.  If I were to reach to grab a coffee mug on a high shelf in our kitchen, well, I couldn’t do it with my left hand.  My range of motion is only about shoulder-height and I can’t lift my hand above my head.  The muscles around my left shoulder don’t engage like their supposed to.  My joints are sore, and the muscles are atrophying.  Physical therapy seems to help, but the progress is extremely slow.  I’ve found myself back in waiting rooms of doctors as we seek to decode the mystery of my sheepshank shoulder.  Doctor’s waiting rooms are like the DMV – especially in the middle of the workday.  You find yourself looking around and wondering how you could consistently, and without fail, book your appointments on prison field trip day.

Man, I need prayer.  If you want to pray for me that’s great, but I actually mean I need to be praying.  I realize that nothing has changed my heart and my viewpoint on life quite like prayer.  In prayer, I’ve found myself on my knees, crying, but knowing that God would make everything right.  Maybe not today, but one day.  In prayer, I’ve asked for the same things over and over – sometimes mundanely but sometimes passionately.  Then, completely unexpectedly and without warning, I realize God has answered my prayer.  It is always in his own way and not in exactly the way I would have orchestrated it.  That’s fine though, since he’s God and I’m not. 

So here’s my prayer.  Lord, I guess I’m fearful about my future.  You tell me that fear and your love can’t co-exist (https://www.bible.com/bible/97/1JN.4.17-18). I believe, I know, that you love me. 

You also tell me not to worry about tomorrow, but pain today causes me to worry about tomorrow.  How can I get past that?  I know you’ll provide all I need and more.  But how long will pain be a part of my life?  I want to play basketball again.  I want to ride a bike.  I want to swim.  I want to have more than one arm to rely on.  Would you grant me these?  Help me stay motivated to do the hard work.  Help me stay focused so that I don’t over-compensate for my pain and depression with food. 

I want you to take this from me, but if you don’t, I’ll love you and I’ll change. I’ll evolve into a new me with you leading the way.

Amen

~Adam