A blog about the life of the Balentine family: Adam, Amy, Teddy, Simon, Thomas, Peter and baby #5.

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.



Tuesday, May 30, 2017

Known | A quick reference helpbook for those experiencing the loss of a child during pregnancy or infancy

On the third anniversary of Simon's death (May 21, 2017), I released a quick reference helpbook for those experiencing the loss of a child during pregnancy or infancy.  The purpose of this book is to provide support to the mother who hears the words, "I'm sorry there is no heartbeat."  It is a fingertip reference of my favorite resources.

Weekly, I receive Facebook messages, emails, texts and phone calls from mothers, family and friends who have heard these words and are now in a fog of grief trying to navigate uncharted waters.  Moms and dads want time with their babies meeting them and loving on them.  Families and friends simply want to be able to do something for their loved ones walking through this loss.  The format is intentionally basic to provide direct links to real help.

This e book is designed to assist in the following ways:
  • To give the mom and dad a reminder that they can slow down and make the decisions they prefer.  Gathering the items they would like to have with them at the hospital.  Knowing all of their delivery options.
  • To give the mom who is in labor at the hospital real ideas of ways to love on her baby and make memories with the time she has.
  • To give the family who has received a life-limiting diagnosis direction of options surrounding care for their baby.
  • To give family and friends tangible things they can do to help as they sit in the waiting room.
  • To give dad support - he too has lost a child.
  • To give family guidance regarding end of life decisions.
  • To give mom physical and emotional health resources after delivery.
  • To provide Hope in Christ.

There are three ways to view and share this reference book, below are the links.  This guide is not region specific so it can support women around the Nation, or even outside of the United States.
Please share as you feel lead with those walking through pregnancy or infant loss including hospitals, labor and delivery units, birthing centers, doulas, obstetricians, midwives, nurses, pediatricians, churches, support groups, and mothers/women's groups.

May the moms, dads, families and friends who use this guide know that they are known and loved by God and their baby is known by their mom and dad, created by God.

Sunday, May 21, 2017

Another CuddleCot for Kansas City!

The Gift of Time CuddleCot Campaign 2017


It is with much excitement and gratitude that we announce Kansas City gets another CuddleCot!  Thank you to each generous donor - you are our family, friends and even strangers.  So many of you don’t even live in Kansas City who donated as well!  That is an act of love and service to the bereaved mother.  More photos to come after the cot arrives and once it is donated to Research Memorial Center.  Thank you for your love and support.  

With your help, the Balentines have donated cots to the following hospitals:
-St. Luke's Hospital Kansas City (2015)
-Children's Mercy Hospital (2015)
-Truman Medical Hospital (2016)
-Research Medical Center (2017)

The following hospitals in Kansas City have cots.  
-Shawnee Mission Medical Center (bought internally)
-Overland Park Regaional Medical Center (donated by Bogle Family)
-Menorah Medical Center (donated by Bogle Family)

If you are aware of a Kansas City cot left off this list, please let us know.

Sunday, May 14, 2017

#simonsgiftoftime 2017

Simon Adam Balentine 
May 14-21, 2014

Tonight we begin the third 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!  My doctor 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 (below 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 are left in a state of shock and the mother left to labor knowing her baby has no heartbeat.  They are in uncharted waters and need direction of how to begin to move through this journey.

Our family and You Made Me Mom, for a third year in a row, are raising $4,000 for another donation of a CuddleCot™ during the third anniversary week of their son Simon’s brief but mighty life.

The donation of this cot is designated for Research Medical Center located 2.5 miles east of our home.  The hope is that this cot will serve families two-fold - by serving in the inital stages of grief through the cot and by serving the bereaved mom through the You Made Me Mom support group monthly gatherings.


Why do the Balentines ask for support from you:
Just in the US alone, 27,000 parents 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 Balentines' 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 on support for bereaved mothers who have lost babies during pregnancy or infancy. The cot will be donated in memory of the Balentine’s two sons who both died in 2014 - Simon who lived one breathing week, and Thomas who died at 13 weeks gestation.     

What is a CuddleCot:
The CuddleCot 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. The CuddleCot 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 CuddleCot Testimonies:
The Balentines have had the opportunity to meet several of the families that have utilized the CuddleCots that YOU have generously helped us donate.   When we walk into this sacred labor and delivery space where a child has died, we are reminded why we do this campaign every year.  These cots truly do give memory making time to these families.

To meet these families yourself, check out these short testimonies of their use of cots donated through #simonsgiftoftime:
-The Bogles (St. Luke's Hospital Kansas City - Plaza)
-The Phipps (Truman Medical Center Kansas City)

Here are a few key things the CuddleCot 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 in grief

·          The CuddleCot system costs $2,764.00
·          The Moba basket costs $180.00
·          You Made Me Mom new website design $1,000.00
·          Our goal is to raise $4,000.00

Should we exceed our 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:
·         new website design 
·         printed materials
·         support group books for bereaved mothers

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

Click here to donate & give #simonsgiftoftime.

Happy 3rd Birthday, Simon.  You are so missed and we are thankful we are your parents.  Your cry was music to my hears.  All the Glory to God.

With Love,
- The Balentines -Amy, Adam, Teddy, Simon, Thomas, Peter and baby #5 

Tribute to Simon Adam Balentine from Adam and Amy Balentine on Vimeo.

Thursday, March 16, 2017

The Greatest Baby Gift

In 2012, my sister, Jill, and best friends hosted two baby showers for our first born son, Teddy.  They were beautifully decorated, had sweet little baby details, were attended by the ones who mean the most to me.  We received a new stash of baby items from our loved ones for our expected babe. Many prayers were prayed over us, both during the showers and throughout the pregnancy. 

In 2013, I told some friends we were expecting our second born and they excitedly offered to host a “sprinkle” for us.  Soon after this offer, we realized our baby’s body was rather sick and he, Simon, may not be with us long.  No sprinkle needed to be hosted, few gifts were bought, but prayers abound.  Simon was born breathing May 14, 2014 and lived for seven days and twenty-two glorious minutes.  Not knowing prior to his birth if he would be joining us at home, we had the privilege of pulling out the gifts we received from Teddy's baby showers and dusted them off one-by-one:  the bassinet, the stroller, and the pacifiers. 

After Simon’s death, while still in the depths of grief, we had a desire to continue to grow our family.  We became pregnant three months after Simon’s birth with our third baby.  This baby stayed with us for 13 weeks in utero and quietly slipped into Jesus’ arms while in utero – six months to the day of Simon’s death in November 2014.  I birthed this sweet baby’s body and could tell by sight he was indeed a little boy.  We named him Thomas.

Death upon death.  Loss upon loss.  Adam and I were dealing with emotions of anger, jealousy, sadness, and confusion.  “I thought we had checked that box, God!” I remember thinking as I began to miscarry Thomas.  “Why are we going through this again?” 

Adam and I clung to one another and to Jesus as we asked him to guide our footsteps.  Prayer was my only way to get through this time.  We wondered why he didn’t take this cup from us.  We didn’t want to lose again and so quickly after our previous loss.  This song, Garden, by Need to Breathe, seemed to be my anthem.

A little over a month after the loss of Thomas, we remarkably became pregnant again with our fourth in early 2015.  We were tired but smiled with God at the blessing of this new child.  We were scared and our family and friends knew this. 

Unbeknownst to us, our friend, Kylie, began a prayer journal for us about six months prior to our fourth born’s birth. She carried this book (photos below) around with her everywhere.  She prayed for us and wrote out her prayers. She shared this book with other friends to join her in praying for us.  My own prayers during this fourth pregnancy were so simple.  My brain scrambled with grief and joy; getting through the day caring for both Teddy, my pregnant body and my heart completely exhausted me most days.  My daily prayer that I meditated on was, Your will.  Not mine.  Nothing more.  Nothing less.  Your will.  It’s like I had finally run out of MY specific request for the Lord.  Complete submission?  Probably not, but certainly doing my very best to submit completely. 

At 38 weeks gestation with our fourth born, my ob had some concerns with our baby’s heartbeat and decided to induce.  A good friend of mine, Courtney, committed to praying for us outside of our delivery room for something like seven hours.  I had confessed to Courtney that I was worried our fourth baby would be stillborn. 

I am reminded of God’s grace for today (Matt 6:34), for reality.  Not for made up scenarios in our head.  I knew this truth, but fear still gripped me.  Courtney prayed, laid hands on the walls, and even left a cold coffee with the nurses for me to enjoy after delivery.  This – this was a gift.  Knowing she was feet away from our room, praying.  Sitting with God.  Waiting to see His plan for our baby's life.  Courtney did the only thing she could do in that moment in the waiting room, pray.  Intercede and ask for her specific desires for our family.  For a baby who would take a deep breath and let us see his chest rise and lower.

Peter, our fourth born, was born with a triumphant cry on September 24, 2015.  The delivery room was as holy as it was for our three previous deliveries.  Sacred and full of blessing.

After Peter’s birth, Kylie presented us with our prayer book.  I can say, without hesitation, this book is the best new baby gift I have ever received.

The prayers for Peter during his pregnancy.

Through Simon, Thomas and Peter’s pregnancies, I have learned there is no better gift to offer a family expecting a child than prayer. If you are considering hosting a baby shower for a family, I would love to encourage you to also create a prayer book or maybe even host a prayer shower.  

Hear me – gifts and things are important when anticipating a new bundle.  Without question.  Diapers and clothes are a necessity.  Showering an expecting mom and her little baby honor them.  And, of course, the family needs practical stuff.  But they also need prayers.  Prayers while baby is being knit in utero in mommy’s belly.  Could I be bold enough to say that we need the prayers more than the stuff?

Jesus tells us, when we pray, start with “Our Father.”  Our prayers can be written, thought, said out loud, alone, with another person, or a group.  I’ve learned from great mentors and pastors that even in the times when our brains are foggy and cluttered, our eyes blurry with tears and no clear thought can be made – we can simply say, Father, Jesus, Daddy, Abba.  Crying out his name is a prayer bring us into instant communion with our great Creator.  I do not claim to be an expert in prayer – I’m a student until the day I die.  But I do know, from my own experience, having an ongoing “dialogue” of prayer with the Lord is good for my soul, my anxiety, and my personal relationship with Jesus Christ. 

If prayer seems a bit foreign to you, may I suggest you start with something simple, like a gratitude journal?  Eucharisteo (Luke 22:19) has a way of drawing you more near, assists in changing your perspective, and gives God thanks for the little things, the big things and everything in between.

I'm not giving us a pass on spending time in the word (meaning, the Bible, God's word), but, in these tiresome days of raising a young family, there are some days the best time I have to give to the Lord is through prayer as I fold laundry, drive or do dishes. 

In our society, we say phrases like, “I’ll be thinking of you and praying for you!” but do we really do this? Possibly you could actually pray for a friend or even Facebook friend that you said you’d be praying for them?  I believe our intentions are good when we tell someone we are praying for them, but we forget.  Either write their prayer request down or immediately, right in the moment that you said you are going to pray for them, do it.  Follow through on your word.

The ACTS method of prayer (Adoration, Confession, Thanksgiving, and Supplication)  is a great guide to our prayers. This acronym can remind us of the elements of prayer I shouldn’t miss, specifically confession for me.  It’s important to remember that prayer isn’t magic.  Prayer isn’t demanding.  Prayer doesn’t take away suffering.  What prayer is, is direct communication with our Creator.  We are promised He hears our prayers and responds in a loving, all knowing way.

All of this to say, God hears and answers our prayers.  He may not answer them in the exact way we prefer.  But in some way, He does answer.  Step one to knowing Christ is to talk to him about yourself and others.

My prayer:
God you have taught me how to pray.  How to be close to you.  I can take this for granted.  Forgive me. The close communion I can have with you in an instant, I often look the other way and don't show up to spend time with you.  I've had many nights on our cold bathroom floor with you in great sorrow.  And I've also sailed high on your wings with great admiration and thanksgiving in pure happiness.  You are a great God.  Thank you for never leaving me.  Lord, you have placed so many in my life that pray for me.  My parents, my inlaws, my sister, my family (including many extended family), my very best friends, my church family, my child loss community, strangers, and countless others.  What a joy it will be to connect the dots in eternity.  What will that feel like?  It brings a smile to my face just thinking about it.  Thank you for guiding my steps, loving me regardless of my mistakes and promising me eternal life without hurt, fear and sadness.  You are magnificent.

Sunday, March 5, 2017

Charles "Honey" Boyd - the most interesting man in MY world

Let me preface this piece by saying that most of these stories are true.  At least, they were presented to me as fact at some point in my life by either my grandfather or my mom.  Like those Dos XX “Most Interesting Man in the World” commercials, there may be some embellishment simply added to make the stories just a little bit better.  But that’s OK, right?  His stories and his presence made him the most interesting man in my world.

My grandpa, Charlie Boyd, was born December 22, 1919, in Chula, Missouri to Margaret and Shelby Boyd.  The Most Interesting Man in MY World had to begin with a more interesting story than just that, didn’t he?  Oh yes.  Legend has it that his loving parents named him “Delbert Eugene Boyd” upon his birth.  The doctor that assisted with baby Delbert’s birth was so horrified by his name that he changed his birth certificate to read “Charles Boyd.”  No middle name included.  At some point, Delbert’s birth certificate was discovered and he started going by his preferred nickname, “Charlie.”  Which was a very wise move considering that his mother had started calling him the much less charming nickname, “Doobus.”  Lucky for him, he received the pretty awesome honorary middle name of “Honey” by one of his best friends from his childhood in Chillicothe, MO, Larry Bowles.  More on Larry later.

Charlie dropped out of school in the 8th grade and began working odd jobs to help his parents provide for their family (including 4 siblings, Raymond, Leland, LeRoy and Shirley).  He would explain to me, when referring to his parents, “They were poor dirt farmers without a pot to piss in.”  One of his main jobs was working for a shoe store, which was likely the place where he fell in love with the retail business.

Charles bravely served during World War II in the United States Navy in the Pacific and was always very proud of that fact. He entered the Navy on January 14, 1941 and served until November 28, 1946.  He remained a student and teacher of World War II history until the day he died.  As one might imagine, Charlie’s entrance into the Navy wasn’t ordinary.  When he went to enlist he either had to prove he had a GED or high school diploma – neither of which he possessed.  He was given some sort of a literacy test by the Navy, which he had to pass, in order to prove he was at least as smart as someone with a high school diploma.  Well, according to Charlie the test came back with a grade of “imbecile!”  He was given a chance to study and retake it in 24 or 48 hours.  Upon retaking it he not only passed, but was given a grade of “genius!”

At the age of 59, Charlie had a heart attack followed by bypass surgery.  He promptly decided it was best to quit smoking.  A few things he would proudly never quit were working hard, Oreos, and eating 1 pound of bacon per week.  The formula seemed to work as he made it to his 97th year without the faintest hint of a lingering heart issue.  He was never hospitalized again until he was 92 when he suffered a bladder issue.

He once told me that Sam Walton toured one of his retail stores in Olathe and was very intrigued by the “big box” concept.  Charlie alluded to the fact that Mr. Walton must have gotten his ideas for Wal-Mart from his innovative new retail strategy.  In other words, “You’re welcome Walton family.”  Charlie was an amazing businessman and entrepreneur – making most of his fortune in the grocery business and real estate.  He was involved in many other businesses including “big box” retail (Gibson’s) as well as bowling alleys.

As a kid I was awed by the fact that my grandpa owned bowling alleys.  With arcades.  ARCADES!  I remember feeling incredibly special one time when we showed up to the bowling alley early one day and he flipped a switch that magically turned on all the arcade games – lighting up the dark room like a carnival in the night.  My brother and I had free reign to play whatever we wanted.  As a kid I would think, “He owns this?  Why does he ever go home?!” 

Well, when he went home he got to hang out at a house that seemed as big as a castle to me.  He had cable TV channels I had never heard of.  He had a pool table. He had a pond the size of a football field filled with catfish the size of sharks!  I was always a little confused by the full body mount of a deer that he had proudly displayed in his basement near the pool table.  The fact that he had a mount was strange enough as Charlie wasn’t much of an outdoorsman or hunter.  The more strange fact was that the deer was clearly very young and small with white spotted sides.  “Did grandpa kill Bambi?” I would wonder.  He explained to me later that he went on an African Safari and hunt, and this was his trophy from that epic journey. 

Grandpa would tell the funniest stories, and had some very strong opinions.  His vocabulary was shaped during his time as a sailor.  He had some of the best and most colorful sayings – many of which I don’t feel totally comfortable writing down here!  One of the ones I heard the most was, “He/she/it is more worthless than chicken sh** on a pump handle!”  So many of these colloquialisms were far from politically correct and came from a time and a place that I, as a (old) millennial, can only try to understand. I certainly did appreciate his no nonsense, straight-shooting approach to life and to relationships.

Unfortunately one of Charlie’s choices created a negative ripple effect through generations of our family.  This was forgiven and overcome, but left some lingering scar tissue.  Both the forgiveness and the pain were evident at his funeral as I talked to my 91-year old grandma, his first wife of nearly 30 years.  Charlie left my grandmother for his second wife, Joan, in the 1970s.  At his military burial ceremony, he was honored for his service with a firing of three “volleys” and a playing of Taps.  An American flag was folded by two current Navy service members, and then presented to my aunt and Charlie’s eldest daughter, Cynthia.  While this was a beautiful and touching moment, I couldn’t help but have a longing for things to be different.  I wished that history could be rewritten and that my sweet grandma was sitting front and center, accepting the flag. 

I am reminded that my grandparents’ divorce wasn’t the “end” of the story.  There was redemption and restoration.  Charlie stayed involved in the lives of his four daughters, and he chose to know and to pass wisdom on to each one of his grandchildren.  God bless him for that.  God redeemed the choices my grandfather made by bringing Larry Bowles back into my grandmother’s life after he lost his wife, Dolly, to cancer in the early 1990s.  Dolly was a dear friend of my grandma’s.  Larry became a great source of wisdom and laughter for us all during his marriage to grandma Millie until his death in 2005.  We are so blessed to have our aunts, uncle and cousins from the Bowles clan as part of our family forever.  Like the song says… God truly does make beautiful things out of us…out of dust.

I’m proud of my Grandpa Charlie.  His death leaves a void on this side of Heaven.  But I know death did not have the last word, not for him.  During the funeral Charlie was quoted to have said very recently to my uncle Vinse that, “If you don’t know Jesus, you are out of luck.”  Amen to that.  See you soon GPC.

Friday, February 17, 2017

Middle-of-the-night bathroom floor moments

I'm sitting this morning thinking about some of the middle of the night bathroom floor moments Amy and I have shared during our marriage.  This post will be heavy, but I promise to bring some hope.

Last night I heard a truck loudly drive down our street and I barely shifted in the bed, slid my arm over to the night stand and grabbed my phone to see what time it was.  This instantly made me feel like my equilibrium was thrown into a blender.  I started convulsing like I was going to puke and my body started shaking.  I ran to the toilet. Amy did her best to assist and to console me as I hugged the porcelain and pressed my bare legs against the cold tile.  "I'm so sorry you have to go through this.  I'm so sorry you have to feel this way," she said.  She touched my leg, knowing I likely didn't really want to be touched in this moment.  But her touch just reassured me that she was with me.  Through another middle-of-the-night bathroom floor moment.

Two-and-a-half years ago I awoke in the middle of the night to feint sobs coming from our bathroom.  I rolled over and saw light coming through a crack in the door, confirming that Amy was in there alone.  She was trying to muffle her cries, but there was no hiding her sorrow.  It came out with each breath she took.  I opened the door to find her on her knees.  She looked at me and said, "I don't want to lose this baby!  Please, God, I don't want to lose this baby!" I wrapped her up and held her.  The cold tile felt in sharp contrast to her hot, sweaty skin.  We lost that baby - Thomas - at 13 weeks gestation.  His death was a like getting car-jacked while on your way home from getting laid off from your job.  Death upon death.

I feel this pressure, this guilt, that I've got to get back on my feet.  I need to be doing more.  Feeling better.  Amy is carrying a huge load right now with managing Teddy and Peter, while also nurturing and growing the new life that is inside her (yes, baby no. 5).  But as I sat on the bathroom floor so early this morning, I realized that this is all I can do right now.  I have to be carried.  Is there valiance in that?  Is there bravery in surrender?

Yes, I believe there is.  I believe realizing how weak I am right now, and relying on my team to execute the game plan is the best way I can lead.  I'm being forced to put my money where my mouth is.  I've talked and written a lot about surrendering to God's will.  Now, in the midst of this trial I realize all I surrendered to God before was what I felt comfortable giving away.  Not all of me.  Work was mine.  Success was mine.  Being a fun, active, playful dad was mine too.  Now I've given all to the One who gave all for me.  Because I don't have a choice!  I know he will carry me, just as sure as Amy will meet me on cold tile of the bathroom floor in the middle of the night.  His strong hand is on me.  He is so careful with me.  He will rise me up when the time is right (1 Peter 5:1-7).

Friday, February 10, 2017

What this is like (brain surgery)

It feels like fog is slowly lifting from my mind, allowing me to string together consistent and coherent thoughts.  Slowly weaning myself off of pain meds is assisting my mental clarity as well.  Nine days ago I had a brain surgery called "Chiari Decompression."  My neurosurgeon cut open a 5-inch incision on the back of my head and neck, retracted the opening, and then drilled-out about an inch or inch-and-a-half size piece of skull.  He then reattached the skull and covered the opening, leaving plenty of room for cerebral spinal fluid to flow through the opening between the base of my brain and spinal canal.  The procedure lasted around 4 hours.  I was intubated and catheterized.  And very anesthetized.

Incision 9 days post-surgery
The four nights in the hospital were a bit of a blur.  I was doped up and coming off of anesthesia.  One thing I remember quite clearly was the hours following getting my catheter removed.  I felt like I had to pee, but I just couldn't make it work.  This is apparently fairly common after getting a foley catheter removed.  My nurse came to scan my bladder after Amy told her I was getting agitated and she confirmed that my bladder was 90% full (you typically feel the urge to pee when you're about 40% full).  The nurse gave me a bottle and said, "You can give it a shot, but I'll come back with a straight catheter in about 10 minutes."  Man, I gave it hell for about 8 1/2 minutes with a lot of deep gut-breathing and straining and my 90% full bladder was emptied into that plastic bottle.  Never have I been so proud and miserable.

Cognition, thought-forming, remembering, and normal brain function are no issue whatsoever.  If anything has affected the clarity of my mind it is the pain.  Pain strangles creativity.  Pain turns you inward and all you can see, all you can worry about, is yourself.  Pain steals time and it wounds relationships.  Pain is what got me in this whole mess in the first place.  Now I'm battling the pain of my incision, my head renovation, and the re-adjustment of my body to its new structure.  The only thing that helps mask the pain is narcotics.  And well, narcotics make you drowsy, loopy and constipated.

I've had a few moments that were emotionally significant.  I remember hearing Amy's voice crying out to God in thanksgiving when she saw me in the recovery room post-surgery.  The only time I've ever heard her (or anyone) with such an authentic cry of thanksgiving is when she delivered Simon.  I felt joy and told her, "This is a miracle."

There was another time - just a day or two after we got home - in the shuffle of our boys playing, people talking, and me feeling awful, that I sunk into a moment of deep despair. I felt like a sideshow, a freak, that nobody was listening to.  I was just existing - like a barnacle stuck to a boat.  Nobody made me feel that way, it is just where I was at the moment.  I bit my lip and used my tear retracting technique, staying as silent as a barnacle.

The last very emotional moment that comes to mind is when I was laying in bed and Peter scooted up to the edge of the bed and started whining for me to pick him up, as he so often does.  At just 16-months old, Peter has no idea why I can't pick him up, wrestle him, love on him, and do things we normally do.  I can tell it has been hard on the little guy.  Well, I put both my hands out, directing him to do the same, and he put his hands over his head.  I used my body weight to drag him onto my bed next to me. He let out a small whimper and then laid his head in my armpit.  I rubbed his back while we both laid there silently for about 10 minutes.  This wild little boy - "Bronco," as Teddy has aptly nicknamed him - healed my aching soul as he snuggled up to me and lay motionless, completely contented to be in his Daddy's arms.  There certainly haven't been another 10 minutes in Peter's life up to this point where he hasn't stopped moving - making this moment that much more special.  My heart was filled by this small, sweet act.

I'm so thankful for all of the prayers and encouragement from so many friends and family.  I'll continue to write as I walk this journey.  Hardships and struggles take me deeper, and force me to ask tough questions, and force me to look through a different lense.  My hope is that it might help someone else who is in a similar trial.

Tuesday, January 17, 2017

Where my head is now

I wrote down these thoughts on January 11, 2017, the day after I learned that getting Chiari decompression surgery was my best (and likely only) option if I wanted to fight this pain that bookends my days.  
Every second is precious. I'm alone. Have I always been alone? At least in my questions of pain, of suffering, of the broken situations that consistently reveal their ugly mugs I am. I'm only alone so far as I keep this to myself.  If I don't invite people in, I'll be stuck navigating this wilderness with no help and no compass. Amy is with me every step of the journey.

I'm sitting at the Blue Line, a glorious hole in the wall hockey-themed bar as I wait for Amy in the River Market in KC wondering if I could stomach the pain for now or for an extended period of time. Can I buck up and be tough? Is it more brave to have my melon cracked open and sewn back together? What's the right move here?  Everyone in this place moves about me, clueless to my turmoil.  But I keep learning that everyone has their own discontent, their own pain.

The doctor said if you can still do 80% of what you want in your life then don't get the surgery. Do I ever want to work out at the gym again? Is it important to wrestle with my kids? Play basketball with them? Rake leaves? Swim in the ocean? Hike a mountain or ride a bike?

The questions aren't about survival but about experiences. They are of love and of living a dynamic life.

I will move forward with Chiari decompression surgery and rest assured God's grace is sufficient to get me through this. I want this to be behind me so badly. But I'm so nervous to have this procedure.  Weirdly, this is both a surrender and a fight. 

Wednesday, January 4, 2017

On pain

There have to be thousands upon thousands of pain sufferers in the world.  By “pain” I’m more thinking of physical ailments, injuries and malformations that lead to a life invaded by acute and chronic hurt.  Emotional and mental pain is no less prevalent or important in my mind, but I currently find myself in the miserable club of the physically tormented – so I find authority to speak and comment freely as a card-carrying member.

It is so hard to describe a pain that nobody can see, and likely, a pain that no one you know will ever feel.  You describe the pain to people because, sure, you want some sympathy.  But more than that you want them to understand how this has changed you.  If you gave a friend a tour of your house while you were renovating the kitchen, you would spend quite a bit of time explaining why you were doing dishes in the bathtub and why your microwave was next to your couch in the living room.  It is as if you are saying, “I’m not really crazy.  I just have to live in a disheveled state like this for now.”  As a pain club member, you realize your life may forever be stuck in this impractical, incomplete, half-demolished state.  Unlike a kitchen renovation – your physical health may not get finished and stuff might not go back to its regular, logical spot.  You might forever have a tarp over the most important room in your house, blocking it from getting used like it was before the demo started.

But nobody gets it.  You tell them, “It feels like a knife is stuck in the back of my head.”  Suggestions of miracle doctors, mostly of the holistic and natural persuasion, are tossed around like restaurant recommendations.  This is appreciated.  People are trying to help. 

I wonder what it would feel like if someone asked, “How has this changed how you live?”  “What is the hardest part of your day?”

We suck at sympathy.  I suck at sympathy.  Maybe that is what I’m continuing to learn throughout this torture.  I don’t often jump to the hard questions when someone tells me they are going through the trials of life.

Something that is strange that I’ve noticed lately is that pain is somewhat of a companion – like the worst invisible friend you’ll ever have.  I get out of bed in the morning and I wait for him to join me.  If he doesn’t show up I think, “Good, but I bet he’s just running a little late.”  I’ve had a day go by where he never comes to see me much at all (doesn’t text, nothing on Snapchat).  Then, like those wonderful Terry Tate commercials, I get blindsided just when I’m feeling confident in recovery.

I go back to lament, taking my cues from the Psalms.  Remembering we have a loving God who wants us to bring it all to him – the questions, the pain – all of it.

1-2 God, God . . . my God!
    Why did you dump me
    miles from nowhere?
Doubled up with pain, I call to God
    all the day long. No answer. Nothing.
I keep at it all night, tossing and turning.
6-8 And here I am, a nothing—an earthworm,
    something to step on, to squash.
Everyone pokes fun at me;
    they make faces at me, they shake their heads:
“Let’s see how God handles this one;
    since God likes him so much, let him help him!”
19-21 You, God—don’t put off my rescue!
    Hurry and help me!
Don’t let them cut my throat;
    don’t let those mongrels devour me.
If you don’t show up soon,
    I’m done for—gored by the bulls,
    meat for the lions.
23-24 He (God, the Father) has never let you down,
    never looked the other way
    when you were being kicked around.
He has never wandered off to do his own thing;
    he has been right there, listening.
26 Down-and-outers sit at God’s table
    and eat their fill.
Everyone on the hunt for God
    is here, praising him.
“Live it up, from head to toe.
    Don’t ever quit!”

(Excerpts from Psalm 22, The Message)