Where is my miracle?

Where is my miracle?

I admit, I have asked this question.  I have just shared 7 miracles this week and have literally heard many of you testify of hundreds if not thousands of miracles.  Where was our miracle?  A recent talk by Elder Donald Hallstrom asked this very question and it has been heavy on my mind ever since.  Especially considering the recent events in Las Vegas where there are 58 families asking, “where is my miracle?”  I know there are families and people all over that are going through a divorce, dealing with depression, coming to grips with infidelity, death, addiction, and chronic illnesses.  Where is our miracle? 

When Kycie was in the hospital, it was a time in my life that I have never prayed for something with such a broken heart, contrite spirit and faith.  I have never experienced such an army of prayers in her behalf.  Why did we not get the miracle we prayed so hard for?

Kycie would be turning 8 years old today.  In my culture, this is a very important birthday.  It would be the year she could choose to be baptized and take upon her the name of Jesus Christ.  Do not get me wrong; I firmly know where my baby girl is.  I know that children are alive in Christ, and that as Kycie died as a child she is saved in Christ.  That being said, it is still one of those milestones, those cultural celebrations that as parents, we truly miss.  It is wonderful to see all of Kycie’s friends make that decision and be baptized, at the same time you are fighting off feelings of sorrow and self-pity.  Why was Kycie the statistical anomaly or the rare case that seems to never happen?  Why my girl?

In his talk, Elder Hallstrom spoke of a Bible story I have heard many times, but until his talk I only understood half the story.  He said, “King Nebuchadnezzar demanded that Shadrach, Meshach, and Abed-nego worship the golden image he set up as a god, threatening, “If ye worship not, ye shall be cast … into the midst of a burning fiery furnace.”  Then he taunted them with, “Who is that God that shall deliver out of my hands?”  These three devout disciples said: “If it be so, our God whom we serve is able to deliver us from the burning fiery furnace. … But if not, be it known unto thee, O king, that we will not serve thy gods.”

Why do I only remember the miracle?  Why do I only remember that the three were saved from the fiery furnace?  I remember their faith in miracles, but do not remember their faith in God’s plan.

There are so many times that I have felt shame, unworthiness and guilt for a lack of faith, faith in a miracle.  I remember reading so many comments on Instagram and Facebook while Kycie was in the hospital.  Things like, “I know she will be completely healed and will be your little girl again.”  “I believe she will walk, and talk and be back to school for Kindergarten.”  I would read these comments and think to myself, “you don’t know how bad it is.  You are not here to see her MRI, and listen to the doctors report.  You are not here to see how much she struggles through the day.  23 hours of struggle for 1 hour of amazement.”  That is when my guilt would set in.  When I would wonder why I couldn’t believe like others do for a miracle. 

Reading this scripture last week helped me realize something about myself.  Maybe my faith wasn’t as misplaced as I thought it was.  In fact, maybe my emphasis of faith in God’s plan, His atonement and eternal life, was what gave me strength and emotional stability through Kycie’s ups, downs and ultimately when she passed away as I held her in my arms.  Some define a miracle as a “beneficial event brought about though divine power that mortals do not understand.” Had all my faith been placed in this type of miracle, I may not have fared so well.  I would have been devastated when we did not get our miracle.  I may question God.  I may doubt His existence.  I might have lost faith and become deaf and blind to the millions of spiritual miracles that were all around us.

Shadrach, Meshach, and Abed-nego had all confidence that God could save them from the furnace.  BUT if He didn’t, they had complete faith in His plan.  I learned it is okay to ask for miracles.  Ask for the very thing you want.  Ask for everything you want, even the impossible.  Having hope that you will get your beneficial event brought about through divine power.  However, it is not a lack of faith to say, “BUT”.  Being real about the situation you are in and understanding that God’s ways are not always our ways.  This will give you peace, comfort and understanding if you don’t get your desired miracle.

As the long days in the hospital went on, I began to realize that each day was a miracle.  Given what her brain scan looked like and what the doctors were telling us, it was a miracle that Kycie opened her eyes.  It was a miracle that she breathed on her own, that she wiggled her toes, held her head up and rolled over by herself.  It was a miracle when she smiled and when she came home.  It is a miracle that she passed away when she did and how she did.  It is a miracle that so many people were touched by her life.  The hundreds of stories that have been shared by people all over the world, each is a miracle.  It doesn’t matter who you are, what religion you affiliate with.  We are all entitled to miracles; they just might not be the ones we were hoping to get.  What ever you are going through, I pray that you get your miracle.  And it you do not, I pray that you will have faith in His plan for you.  Happy birthday sweetheart.  I think about you every day, all day.  Thank you for helping me believe in miracles.  Thank you for being my little girl forever and ever.  I love you.  Daddy

Goodbye Kycie Part 2

One Sunday morning at a small southern church, the new pastor called on one of his older deacons to lead in opening prayer.  The deacon stood up, bowed his head and said, “Lord, I hate buttermilk.” 

The pastor opened one eye and wondered where this was going.  The deacon continued, “Lord, I hate lard.”  Now the pastor was totally perplexed.  The deacon continued, “Lord, I ain’t too crazy about plain flour.  But after you mix ‘em all together and bake ‘em in a hot oven, I just love biscuits.”

“Lord help us to realize when life gets hard, when things come up that we don’t like, whenever we don’t understand what you are doing, that we need to wait and see what you are making.  After you get through the mixing and baking, it’ll probably be something even better than biscuits.  Amen.”

After a short discussion, Jamie and I decided to leave the 5 boys with grandma until Saturday.  This should allow us enough time to resettle after bringing Kycie home for the hospital.  We had planned on Kycie staying at Primary Children’s for several weeks, but after being released form the PICU to the CMU on a Sunday, Jamie called me on Tuesday and told me they were being released on Wednesday.  Surprised but relieved I took work off on Wednesday the 8th to go get them.

Mentally and emotionally this hospital stay was so much different for Jamie.  I think she was as depressed as she had ever been.  The smells and sounds brought back hidden fears and suppressed grief.  The sudden free time caused her mind to wander and she became very homesick.  Jamie sent me a link to a song she had been listening to.  Christina Perri - Human.  “I can hold my breath – I can bite my tongue – I can stay awake for days – I can fake a smile – I can force a laugh – I can dance and play the part – I can do it – But I’m only human – And I bleed when I fall down – I’m only human – And I crash and I break down.”

Kycie had improved faster than anyone expected.  She was still showing some signs of delirium but she was breathing without the help of oxygen and she had regained a lot of her strength.  There was really nothing more the hospital could do for her than what we could do for her at home.  Plus, we felt getting her home would help improve her delirium to surround her with familiar sights and sounds rather than the noise of the hospital.

On Thursday I had to get back to work in Caliente, NV and left Jamie home alone with Kycie.  Friends stopped by to help where they could and Jamie worked around the clock with her little girl.  Friday, July 10th, I was working back in St. George for half a day and Kycie had a prescheduled appointment with her pediatrician.  Wednesday and Thursday night were really rough.  Kycie didn’t sleep well at all, even with her nighttime medications.  She was up all through the night and the two of us would take turns getting up with her.  Kycie still had a lot of mucous in her mouth that she could not clear.  Because she didn’t drink anything, the mucous was very sticky and hard to get out even with the suction tube.  We would check her oxygen levels and blood sugar throughout the night. 

While at work on Friday I texted Jamie back and forth.  I told her I was worried about Kycie because she seemed so different to me.  Something wasn’t right.  I hadn’t seen her smile since before she was LifeFlighted back on the 30th of June and I struggled to make eye contact with her.  Jamie took a selfie of her and Kycie.  Kycie was smiling as Jamie held her close.  “No, she has smiled for me several times.  She looks the same to me.”  Jamie hadn’t left Kycie’s side since June 30th, I think it was hard for Jamie to see Kycie’s change.

I got off work and met Jamie at Dr. Marsden’s office.  We absolutely love Dr. Marsden.  I have never seen a guy show more compassion for what he does than Mike Marsden.  I knew every time we brought Kycie into his office we destroyed the rest of his schedule and put him way behind.  He never misses a beat, and when he does he tells you straight up that he missed it.  I know that he has a copy of Kycie’s funeral program in is office and that every day he looks at it and says, “Kycie, help me that I don’t miss anything today.”  Doctors lives seem glamorous and enviable sometimes, but in reality they have an enormous responsibility that brings with it a daily does of stress.  I am thankful for all the doctors and nurses that have become part of our lives over the past 18 months. 

Dr. Marsden was surprised when we he walked in to find the three of us there.  “I cannot believe she is already home” he said.  He listened to her lungs and did his check up.  “She looks amazing!”  We talked to him about the past week and how things are going.  I told him that although she looks good, something doesn’t seem right and that something seems off.  He looked her over again and sat there with his hand on his chin.  “Let me make a few calls and bounce it off a few different doctors and see what they think.”

After we left Dr. Marsden consulted with another specialist.  They decided to have Kycie try a new medication.  He was going to call it right in for us but got distracted with another patient.  Later that night he was talking with his wife when he realized he had forgot to call it in.  He stood up to make the call when something came up and he forgot about it again.  The next day after hearing Kycie had passed away Dr. Marsden called me and told me about this.  What a blessing it was for him in forgetting to call the new medication in.  It would have made no difference in improving her health in that short of time, but it would have caused him to question if it was the cause of her death.  Just another silent miracle.

Our sister-in-law called us that night and offered to watch Kycie so Jamie and I could go to dinner.  It was tempting, but Jamie decided to spend the rest of the night with Kycie.  Friday morning had been a rough one and Jamie had a complete break down.  Just after getting her out of the bath Kycie threw up everything Jamie had just fed her.  All over her clean clothes, blanket, carpet, bed and all over Jamie.  I was at work and Jamie was left alone to clean up Kycie, change the bedding, scrub the carpet all while watching Kycie’s sugars close as she had been dosed with insulin for her meal but has now thrown it up again.  “How are we going to do this?  How am I going to do this?  I just cannot do it.”  But she did.  She got things cleaned up and got Kycie to her doctor appointment on time.

A good friend came over to talk about our yard.  We had started a new therapy pool for Kycie that would also work as a swimming pool for the boys.  We were finishing our back yard and he was helping make it all possible with seamless ease.  I carried Kycie in my arms as we walked around the yard.  When we got back into the house he asked how things were going.  We both watched Kycie as she stared at the TV.  “I don’t know man.”  I said, “I just don’t know.  Something doesn’t seem right.” 

Jamie returned with Thai takeout and the three of us sat in our quiet house for dinner.  We had rented our entire married life until we built this house.  Kycie was Jamie’s sidekick while it was being built.  I would be at work and the two of them would stop by daily to see its progress and giggle with excitement as it slowly was built.  Being the only girl, and a spoiled little girl at that, the house plan called for a room at the top of the stairs with a private bathroom.  Her room was decorated with Pottery Barn everything except for the refinished dresser that was once Jamie’s.  A shadow box hung above the white pole bed with white, pink and grey covers and pillows.  Inside the shadow box was Kycie’s blessing dress, bracelet and flowers.  On the window seat was more beanie boos than you could count.  In the closet were dresses from Matlida Jane, Taylor Joel, Persnickity and more. In her other closet were a few dolls, but Kycie was more into trucks and lizards than dolls and flowers. 

We got Kycie settled into bed and had prayer.  The familiar sigh of exhaustion exhaled from both of us as we lay in bed.  The last few nights had been a blur.  It seemed like we were up with Kycie all night long, but maybe it just seemed that way.  I told Jamie that tonight I was going to screen shot my phone every time I got up so we could see just how often we were up with her.     

I couldn't fit all the screen shots on this collage, plus I only did a screen shot when I got up, not when Jamie got up.

At 4:13 on the morning of July 11th Jamie woke me up.  Since bringing Kycie home in May, I was the lightest sleeper.  If Kycie made a peep I would wake up.  It took Jamie yelling my name three times to get me to wake up.  We had been checking Kycie's oxygen levels all night, but when Jamie got up to check on Kycie around 4o'clock her levels read in the 70's.  Too low.  "I don't know if something is wrong with the meter or what" she said with panic in her voice.  I sat next to Kycie and checked it again.  Her oxygen saturation level was at 72...it should be above 90 and up to 100.  I looked at Jamie and said, "get her bag ready and lets go."

Jamie ran into the laundry room and threw on some clothes.  We kept an emergency bag for Kycie ready with insulin, apple juice, glucose meter, extra g-tube attachment, 50ml syringe, change of clothes among other things.  I was sitting next to Kycie on her bed and decided to pick her up and hold her to see if it would help her numbers go up.  The only light in the room was a small night light at the side of Kycie's bed.

Shortly after Kycie passed away we received a letter from our Stake President.  I want to share a little of it: 

"To Jamie and Josh – Angels:  I also testify that God never leaves us alone, never leaves us unaided in the challenges that we face.  He certainly knows how lonely and troubled we will sometimes feel.  For many of the Family and especially the Terry Family, the days ahead will be lonely without Kycie.  In times of special need, He sends Angels, divine messengers, to bless His children, reassure them that heaven is always very close and that His help is always very near.  From the beginning down through the dispensations, God has used angels as His emissaries in conveying love and concern for His children.

Usually such beings are not seen.  Sometimes they are.  But seen or unseen they are always near.  Sometimes their assignments are very grand and have significance for the whole world.  Sometimes the messages are more private.  Occasionally the angelic purpose is to warn.  But most often it is to comfort, to provide some form of merciful attention, guidance in difficult times.  I testify that angels are still sent to help us, even as they were sent to Adam and Eve, to help the prophets, and indeed to help the Savior of the world Himself.  The Savior had angels that ministered to Him when He was tempted.  He had angels that ministered to him upon his suffering in Gethsemane.

I have spoken here about heavenly help, of Angels dispatched to bless us in time of need.  I am confident that Kycie will have an assignment to be a guardian angel to watch over this family.  Now, when we speak of those who are instruments in the hand of God, we are reminded that not all angels are from the other side of the veil.  Some of them we walk with and talk with-here, now, every day.  Some of them reside in our own neighborhoods.  Indeed heaven never seems closer than when we see the love of God manifested in the kindness and devotion of the people so good and so pure that Angelic is the only word that comes to mind.

Jamie and Josh have been such Angels.  Many of your neighbors and friends have been Angels to you and your family and will continue to do so for many years to come.  I am confident that the Angels above have looked down and been grateful to those that have provided love and support to the Terry family.  I can hear them:  Hey, someone down there really ‘gets it’.  This is someone that will listen and do our bidding.  The scriptures teach us that Charity is the greatest of all God’s gifts and many of you have demonstrated this special gift of Charity by ministering to the One with

Christ-like love."

I also testify in Angels, just as President Anderson wrote.  Seen or not seen they are always near.  I know Kycie's assignment and know she has been a very busy angel over the past 12 months.

Because of Kycie's brain injury, she would uncontrollably turn her body to her left, especially if she was in pain.  Her back would bend like a "U" to her left and her head would turn to her left shoulder.  I was holding Kycie on my lap and she was cocked to the left.  In the short time that Jamie had run into the kitchen, Kycie's oxygen levels dropped into the high and then the low 60's.  I yelled to Jamie that we have to go...NOW!

Just then Jamie walked into the bedroom and turned on the light.  As soon as Jamie walked in, Kycie's body relaxed and it was like I was holding her before her brain injury.  Her rigid and bent body straightened up and her head that was buried in her left shoulder slowly turned to me.  She turned all the way to her right and looked me directly in the eyes.  

"Angels speak by the power of the Holy Ghost; wherefore they speak the words of Christ.  Wherefore, I said unto you, feast upon the words of Christ; for behold, the words of Christ will tell you all things what you should do."  2 Nephi 32:3

Kycie looked at me and I instantly knew what to do.  She was leaving and I needed to let her go.  Jamie saw it too, but the mother inside her pushed her to the phone.  She grabbed the phone and called 911.  It took her 3 times before dispatch could understand her because she was so upset.

I set Kycie on the carpet and Jamie begged me to do CPR.  I shook my head and told her I couldn't.  Again Jamie pleaded with me to start CPR.  I knelt over my beautiful little girl and felt a faint pulse.  I started chest compressions.  Jamie was still on the phone with 911 telling me how to do it.  I finally had to stop her and say, "I know how to do CPR."  Within minutes a police officer arrived and Jamie let him in.  I remember him rushing to the other side of Kycie and immediately took over with compressions.  I slipped on a pair of basketball shorts that was sitting next to me.  The officer asked if I would give the breaths as he would do compressions.  About a minute later paramedics were in our room pulling out their gear.  Jamie stood above them with her hands over her mouth and wet with tears.  I sat back on Kycie's bed and watched.  They pulled out the AED and started to attach the little electrodes to Kycie's chest.

I couldn't bare to watch my little princess be shocked.  I knew what I had to do no matter how incredibly difficult it was.  I told them to "stop!"  Everyone froze and looked at me.  With both hands pushing hard above my ears to try and calm my pounding head I said, "Please don't.  Please stop.  She has had enough."  Again everyone looked perplexed and started to look at each other for instructions.  Someone asked if we had a DNR they could see, I told them we did not.  I looked at Jamie and she nodded to me.  "Just let her mom hold her."  One by one the paramedics stood up and walked out of the room.  Jamie sat down cross-legged and held Kycie tight sobbing into her hair.  

At that moment of sadness the Spirit testified to us that we were an eternal family.  That we have made the necessary covenants and ordinances that cannot be bound by death.  "The only way to take sorrow out of death is to take love out of life."  Our sorrow was overwhelming because our love was infinite.  Love you mostest infinity!!!  We got to hold Kycie for the next two hours, time I am forever grateful for.  A few family members were able to come hold her for the last time before the mortician arrived.

Looking back on it, Kycie knew exactly what she was doing.  I have read a lot lately about near death experiences, experiences beyond the veil and what we know from the scriptures about life after death.  I believe in some special instances, God allows the individual to chose when they leave.  Kycie could not leave us in the St. George hospital on June 30th with all her brothers around her.  I do not believe she wanted to leave in the PICU in Salt Lake with so many people around.  I know that Kycie waited until it was just me and Jamie.  She gave us as much time as she could before the boys returned home.  

I am so thankful that the boys were not home to witness the chaos of that early morning.  I am thankful for the police officers, fire department and paramedics that rushed so quickly to our house that night.  I hope they understand why a father would ask them to stop trying to save his little girl.  I hope they know that it was because I loved her with every fiber of my being.

Kycie finished the race strong.  I am still in awe when I think about how hard she fought during her stay at the PICU and NTU.  Everyday, three hours a day Kycie would fight through tears, pain and frustration.  For a severely brain damaged little girl to do that is absolutely remarkable to me.  She did not do it because she knew tens of thousands of people were cheering her on, she did it because her mother asked her to.

We have been incredibly blessed over the past year.  We have witnessed just how good the world is.  Just today, someone paid for our lunch.  The waitress wouldn't tell us who it was, they just wanted to do something good.  I will never be able to thank the thousands of people that prayed for Kycie and our family.  I cannot tell you how much your messages of hope and encouragement has meant to me and Jamie.  THANK YOU!

Jamie asked the kids today to write down some things they remember about Kycie and what they miss the most.  Here is mine:

She has blond hair that is pretty in curls or fresh out of the bath.  When she would get out of the bath she would curl up into a ball with her towel over her and would do this half cry half laugh when it was time to put lotion on her.  Kycie always smelled like baby lotion, with smooth, flawless skin and in the summer she had the cutest CopperTone butt.  I loved how she would roll her L's and R's and when a word was used with both together, it was "really" adorable.  She always wanted me to lay by her for "just a little bit" or "just a minute."  When she fell asleep she would dig her head into my back, if I scooted over she would move right with me.  She was the hottest sleeper I have ever met.  She would sweat during the night but her feet were ice cold, just like her mamma.  We would always play a kissing game where she would sit on my lap facing me.  I would say, "you can't kiss me" and she would giggle every time she missed kissing me on the lips as I would turn my head.  Eventually she would hold my head and kiss me right on the lips.  Kycie loved hugs and kisses.  Sometimes I would be putting her pajamas on and she would turn and kiss my arm and smile.  Her smile was the best.  She had about 10 different ones that each meant something different.  One of my favorite smiles can be seen in her "Kycie 5" video when she is doing her cheer dance.  She bends down to slap the floor and she sneaks a peak up to mom and dad.  The smallest of smiles appears with a crinkled nose and squinty eyes.  It is her "I don't want to smile but it is hard not to" kind of a smile.  I loved how I never had to go upstairs to see what the boys were up to because Kycie was always giving me a play by play over the banister.  She would never back down to her brothers, if they could do it she could do it too.  She wasn't afraid to fight back and she carried a mean slap to the face.

I hate that Kycie cannot have dinner with us at night.  I hate that I couldn't see her go to kindergarten and progress through school. She was so smart and loved to learn.  She told me she wanted to be a doctor once.  I figured a vet because she loved animals so much.  But after her diagnosis, I think she would have been the best pediatric endocrinologist in the world.  I hate that I don't get to see her graduate and fulfill her dreams.  There are so many things that I hate about this year, however, I love biscuits!  I love how much I have grown as a husband and father.  I love how much my family has grown.  I love all the new people I got to meet and continue to meet.  I love to hear stories about how Kycie changed someone "for good".  I love that the story is not over and that in the end I will be given something even better than biscuits.  

I know I will see you again sweet girl.  I love you mostest infinity!!!  Daddy

If you haven't seen this video, it was made for the Jubilee of Trees in St. George and goes through pictures from beginning to end.

This video was made in preparation of The Jubilee of Trees in St. George, Utah. A Christmas tree has been made in memory of Kycie and will be donated to the neuro and trauma unit in St. George. The video shows from the time Kycie was born to the time she was laid to rest with a short description of what happened.

Goodbye Kycie; Part 1

How are you doing?  I have been asked that question many times over the past 18 months. I would say that I don’t really have hard days, I only have hard moments.  It is the little things that hit you when you are not expecting them.  I can walk through my room 10 times a day and be just fine, but every once in a while I will stop in the very spot I held Kycie as she took her last breath.  Hard moment.  It seems like when ever I start to feel sorry for myself or am having one of those hard moments I hear Kycie whisper in my ear, “don’t be sad daddy.  I am happy so you should be happy.”

We never intended our story to be as public as it has become.  I write these blog posts for me and me only.  I know people want to know what happened, what we were thinking and why we did the things we did.  I know people want to ask me when they see me around town but don’t dare.  I know that these people prayed hard for Kycie, probably even donated money to my family.  I would like to tell them but I just can’t.  By writing it down they don’t have to ask.  This way I don’t have to retell it over and over. 

The biggest reason I make these posts is because it forces me to write it down.  When we were living in California, a speaker in stake conference gave me an idea.  We had a brand new 2.0 megapixel camera and a computer.  At the end of each week I would use one or two pictures we took during the week and put it on a word document.  I would then write about what happened that week and it was used as a family journal.  That worked out pretty good when we only had two kids, but when we added a 3rd, then a 4th, then a 5th and then a 6th it became obvious that writing weekly about each kid wasn’t going to happen. 

Family Journal Page from 2006

Family Journal Page from 2005

In 2011 I started to make a year-end book using iPhoto.  It started as a Christmas present for Jamie where I would gather photos from each month and write a little about what happened.  That way we could look back at the year and see what we did as a family each month.  In the digital age, we take a lot of pictures and print almost none.  This way we had a printed copy of the year.  Not in great detail like before, but better than nothing.  I did this every year until 2015.  Things got too busy at the end of the year and I never finished the book.  I planned on finishing it when suddenly Kycie got sick.  Now I’m really behind.  I want to make a book for each month Kycie was in the hospital.  We saved all our text messages we sent family and friends each night while in the hospital and I want to include those in the book.  I want to add my personal thoughts and feelings.  I want a book for Kycie’s welcome home, her time at home, her time back at Primary’s and a book with all the wonderful photos we have of her funeral.

Family Year End Journal 2013

Life doesn’t slow down and I can barely find time to type up a blog post.  I will do one more blog post about Kycie and then I will focus on finishing all the family journals.

With Kycie’s story getting so much attention it has had both positive and negative effects.  The other night I was talking with my brother.  Speaking with him helped me realize a personality and behavioral change with Jamie and me.  I don’t know what exactly caused it, probably everything added together.  From the traumatic day of January 30th, to living 310 miles apart while Kycie was in the hospital.  Not to mention the stress of caring for 5 other little boys who understood but could not comprehend what was going on.  Owning a small business 110 miles from home and trying to keep it afloat.  Finally the unexpected passing of Kycie on July, 11th.  Suddenly Kycie was gone and we had to move on with our lives.  Jamie and I pulled back from those we were closest to.  Some of those who played the biggest part in caring for our family while Kycie was in the hospital were left with reading our Instagram posts to find out how we were doing.  We closed up to close friends and family members.  I know we offended some, and for that I am sorry.  I’m not a psychiatrist and I know little about the study of human behavior.  I know that this experience for me has led to certain obsessions that have led to peculiar compulsions.  I have to consciously resist feelings of guilt, anger, resentment and depression.  It takes a lot of energy to focus on the positive and work towards making things better for the next child. 

I avoid contention and drama the best I can but sometimes still find myself knee deep in it.  Someone close to me said, “People ask me how you are doing and I don’t know what to tell them because you never talk to me.”  I told him, “I do not talk to anyone.”  And that is really hard for me because I have a lot to say.  I talk to Jamie because of anyone in the world she will understand me the best. 

One thing I want to make clear is that I do not understand what Jamie went through.  I never will.  I am not a mother.  I am not a mother that lost a child.  I am not the mother of Kycie and therefore I will NEVER understand what Jamie went through or is currently going through.  We can relate to each other in a lot of ways where we were by each others side through it all but I will never comprehend the pain and anguish Jamie deals with everyday.  She does really good in her day to day activities, but no one will ever really know. 

What do you say to someone that has lost a child?  I do not know the answer to that.  I find myself struggling to find the right words when introduced to a grieving family.  So I truly understand when someone comes up to us at a loss for words.  I do know that this experience has taught me an important lesson about grief.  It is a phrase that I will try and never say to a parent who has lost a child.  I will never say, “I know what you are going through.”  I cannot say that because I do not know what they are going through.  Their child was not my child.  Their circumstances were not my circumstances.  Their grief is not the same as my grief.  I can relate with them in certain aspects, but I do not know what they are feeling.  I have had people tell me, “I recently lost my cat so I know what you are going through” or “when I was little I lost my sister so I know exactly how you feel.”  I was not offended when they said that because I knew they were just trying to connect and relate with us.  I believe this personal rule goes for almost any difficult trial someone is enduring.  Everyone handles it different and we just have to do our best not to judge or criticize. 

Like I said before, I was the closest person to Jamie through this whole ordeal and even I do not know what she is going through.  There is only one person who knows, and that is Jesus Christ.  It literally hurts my brain to try and understand how encompassing the atonement is.  There are some wonderful talks and study guides that are helpful in learning about the atonement, but when it comes down to it the atonement of Christ is about as personal as it gets.  It is something so spiritual and sacred the English language cannot adequately describe it.  It is something you have to experience for yourself before you will start to understand.  Through His suffering in Gethsemane that was carried to the cross and sealed with His death, Jesus Christ is the only one that understands what I went through, what Jamie went through and what we all continue to go through. 

Diabetes

The diabetic online community has been absolutely amazing to our family.  Right off the bat they offered help but most of all they offered love.  However, I do feel a certain disconnect with other parents raising a child with type 1 diabetes.  A few days after being moved from the PICU to the Children’s Medical Unit (CMU), a nurse came in to educate us about T1D.  After about 10 minutes she could tell we were completely overwhelmed.  A look I’m sure she gets from parents all the time.  Not only did Kycie have T1D, but she also had a severe traumatic brain injury.  We were still trying to process the fact that Kycie may never talk, walk or feed herself again and diabetes was not at the forefront of our mind.  The nurse recognized that and changed her teaching methods to teach us little by little.  While in the hospital, we learned a lot about managing diabetes, giving shots and counting carbs.  If her sugars were acting up (or down) there was always a pediatric endocrinologist down the hall to call on.  We only cared for a diabetic child for 6 weeks on our own.  6 weeks!

I have been asked to help diabetic communities from Dubai, to the United Kingdom.  From Australia, Israel, Canada and about 25 other countries.  We have remained close with JDRF and I was honored to run for the Joslin Diabetes Center in Boston.  I look at some of the moms and dads that act as T1D activists and admire them for their dedication and desire.  I do not know how they do it.  We have set up The Kisses For Kycie Foundation to help bring awareness and education to type 1-diabetes.  To be honest, I don’t know what to do with it.  It can be a full time job, and I already have two full time jobs.  I have decided that I will likely join some other board somewhere and help them when I can.  I would like to do one fundraising event a year, preferably here in St. George and Southern Utah.  This is Kycie’s home!  People know her here and I would love for her legacy to continue all over, but especially in her hometown. 

I am not into politics.  Politics frustrate me.  There definitely is a place for advocating awareness and improved care for T1D in legislation and in Washington.  But that is not me.  I personally feel that government should stay out of medicine.  When I have time, I would like to focus on hospitals and schools of medicine.  I would like to work with the doctors and health care facilities and teach them what I know.  I understand that I am naive and green when it comes to these things, but I believe I have something that could help them and ultimately improve the quality of care in America.  I would like to see large health care organizations such as Intermountain Health Care and Kaiser work within their own framework in changing screening protocols for type 1-diabetes.  That gets into hospital politics, which is equally as frustrating, but something I am willing to try.

I am also ready to make a change in St. George and Southern Utah.  We need pediatric specialists that will be able to care for our growing, yet isolated community.  For me, this is at the forefront and I will do everything in my power to make a change.  

I write this tonight with a heavy heart as I think of one year ago.  In the next day or so I will write about Kycie's final three days here on earth.  Tonight I want to remember Kycie as I see her in my mind.  I do not see her as a little girl with a brain injury fighting to regain all that she lost.  My most vivid memories of Kycie are best depicted in the video I made for her funeral.  From the time she turn 5 years old until just a few weeks before her injury.  

This is Kycie.

Created for Kycie's viewing. From when she turned 5 up to the week she got sick. #kissesforkycie

This is why the song "Photograph" hits me harder than "Fight Song".  It is how I remember my little girl.

Refiners Fire

I figure we traveled over 13,000 miles driving or flying back and forth between St. George and Salt Lake City from January to July 2015.  On July 8th I was making my last drive from Salt Lake to St. George.  Jamie was in the passenger seat with Kycie in the back securely, but uncomfortably riding in her car seat.

Kycie loaded in her car seat on July 8th, 2015 for her ride back to St. George.

This drive was different in so many ways.  It felt different, something was off but I couldn't put my finger on it.  Our drive started in the Rocky Mountains of the Wasatch front and continued through the edge of the Great Basin along I-15 which eventually drops into the northeastern tip of the Mohave desert including St. George.  Most of the drive was spent in deep reflection and confused conversation.  Jamie had a strong impression before they LifeFlighted Kycie that we would not be bringing her home this trip.  When Kycie arrived at Primary Children's Hospital and was assessed by the specialist they told us Kycie was very sick and to be prepared for her to get worse before she would get better.  During this stay at the children's hospital I saw Kycie suffer in a way I could hardly bare.  A suffering I could not imagine but had to witness. 

Being back in the PICU was a surreal experience to say the least.  The smells and sounds brought back a cascade of flashbacks from our first experience.  Kycie's bed was only two away from the bed she occupied back in February.  I arrived at 3:00 in the morning to a heavily sedated but stable little girl and an exhausted mother.  The next morning Kycie got some of her color back but was still really puffy due to the air that had moved from her chest cavity up around her neck.  

So many tubes.  Kycie has a large bruise from her CGM (continuous glucose monitor) located just below her g-tube port.  A pic-line was put into her right wrist.  Kycie's neck and face are still puffy from the pneumothorax.  

Kycie had been so wiggly and irritable the previous week it was weird to have her just lay there.  There was a lot of down time to sit and think.  I was still bugged about what happened at the hospital in St. George.  I was trying to put it all together but the puzzle pieces were not matching.  Jamie had told me there was another hiccup after the pediatric team arrived in St. George in placing the chest tube.  A doctor had just come into the room and asked the nurse to leave so he could speak with me and Jamie alone.  He introduced himself and his administrative position with LifeFlight.  The doctor wanted us to know that they were aware of what happened.  He was very sincere in wanting us to understand and know exactly what happened with the chest tube.  Other than an unnecessary injection, no harm was done.  However, a review would be made to help make sure these things don't happen in the future.  I was grateful for his honesty in being upfront with us and appreciated his sincerity.  

The first few days all we could do was wait and watch.

For the next day or so I sat in the corner of Kycie's room trying to make sense of everything.  There were a few windows near the ceiling facing east.  This allowed a little natural light into the unnatural room with glass walls.  We definitely had unanswered questions from Kycie's first transport back in January so the visit from LifeFlight really confused me.  Why did such a high ranking administrator personally visit our room for a mishap that caused absolutely no complications?  Maybe that is just protocol...probably is.  Was it coincidental and he just so happened to be on the floor?  During our first stay in the PICU we were advised to concentrate on Kycie and that is exactly what we did.  However, I still couldn't fit the pieces together.  I was at a loss.

We were about an hour into our drive home with Kycie when Jamie spoke up,  "Josh, I am so confused.  I had a very distinct feeling that we would not be bringing Kycie home with us today."   We talked about it for quite some time.  What I had felt, what she had felt and what we both thought.  We muddled through the difference of a prompting from God or just a motherly worry.  I had turned my rear view mirror so that I could see and watch Kycie.  She appeared calm, much different from our first trip home from the hospital where we struggled to control her blood sugars.  I just knew getting her home would help calm the storm of mental anguish Kycie just went through and is still going through.

Everyone was amazed at how well Kycie started to rebound after getting to the PICU.  With the type of virus Kycie tested positive for, they figured she would get much worse before she started to get better.  From the first day in the PICU Kycie started to improve.  There wasn't a lot we could do except watch and wait.  The attending PICU intesivist would stop by our room and chat on her down time.  She was very easy to talk to and relate with.  We talked about family, kids, work and we talked about life.  As she became more comfortable with us, I remember her asking me, "Josh, what are you going to do if this happens again?  Because it will happen again."  

What do I do as her father?  When do I say enough is enough?  I had asked myself these questions a thousand times over the past 6 months.  We had been on this roller coaster before and it doesn't seem to want to stop. I have no choice but to hang on for the bumpy ride until it finally comes to a stop.  How do I make the decision to let her go?  I know if roles were reversed and I was lying in a bed unable to walk, talk or feed myself as a result of a severe brain injury I would want someone to listen to what I want not what they want.  The mere thought of signing a DNR (do not resuscitate) brought a wave of guilt and I prayed that I would never have to make that decision.

Two nurses walked into our room on July 4th and said they were ready to extubate.  They positioned themselves around Kycie and got ready to take the breathing tube out of her throat.  I paused with fear and asked who else was going to help.  Surely they needed more than just two people.

Up until this point, my worst experience at the PICU was watching them extubate Kycie back in February.  Replaying the procedure in my mind would bring instant tears to my eyes.  It would take too long to explain the events leading up to Kycie's first extubation, but mentally we had prepared ourselves for the possibility that Kycie might die soon after them removing the tube.  There were at least 8 professionals in the room as they slid the tube out of Kycie's throat in February.  Everyone froze for what seemed like an eternity.  All anyone could do was watch and see if Kycie could breath on her own.  Jamie and I knelt at the foot of her bed sobbing and pleading with her to breath.  She gasped for air over and over as you could see her stomach recoil in and her chest push out as if her lungs were demanding oxygen but her throat would not allow any in.  She looked like she was drowning and we were unable to help her.  After 10 or so seconds Kycie was finally able to catch a breath and eventually she able to breath on her own.  The extubation in February haunted me and I prayed I would never see it again.   

Happy 4th of July!!!  Looking so much better with her color returned and swelling going down.

This time it was just two nurses.  They quickly slid the tube out and Kycie gagged and vomited.  They rolled her to her side and cleaned her up.  Just like that Kycie was breathing on her own.  That wasn't so bad I guess.  Jamie celebrated her first 4th of July outside of Richfield in the PICU with me and Kycie.  I felt relieved to be able to kiss Kycie's lips again without a tube and the smell of adhesive.  I was encouraged with her progress and thought the worst was over.

I recently read a talk called "Reflecting on the Marks of Jesus." by Daniel Peterson.  In it the speaker talks about Nicholas Wolterstorff's agonizing account of his grief in losing his son.  At one point Wolterstorff cries out in his anguish:  How is faith to endure, O God, when you allow all this scraping and tearing on us?  You have allowed rivers of blood to flow, mountains of suffering to pile up, sobs to becomes humanity's song - all without lifting a finger that we could see.  We strain to hear.  But instead of hearing an answer we catch sight of God himself scraped and torn.  Through our tears we see the tears of God (Wolterstorff Lament for a son).

Peterson continues:  For a long time I knew that God is not the impassive, unresponsive, unchanging being portrayed by the classical theologians.  I knew of the pathos of God.  I know of God's response of delight and of his response of displeasure.  But strangely, his suffering I never saw before.  God is not only the God of the sufferers but the God who suffers.  Christians know this because they understand that Jesus Christ is the perfect representation of the Father, and because Jesus himself died upon the cross - unjustly, painfully, and young.  Moreover, although he was "the resurrection, and the life." Jesus too sorrowed at loss, bereavement, and pain.  He mourned the death of Lazarus because he loved him.  John 11:35 ("Jesus wept") is well known as the shortest verse in the Bible.  It's less known, however, as one of the Bible's most significant passages.  But it is precisely that.  Why?  Because it demonstrates the Savior's personal care for humanity and shows him, though divine, to be emotionally involved with us.

One of my favorite pictures.  Kycie's OP (Occupational Therapist) who worked so hard with Kycie during her previous 111 days at PCMC.  Jamie caught her giving Kycie a hug.  She whole heartedly loved little Sis.

The doctors had slowly taken Kycie off the sedatives and she is now breathing without the help of a ventilator.  I fully expected Kycie to snap back into her normal routine and we would be well on our way home.  After waking up from sedatives wore off, Kycie could not fall back to sleep.  She had a glossy look to her eyes and she could not fixate on me.  She would let out long, drawn out moans and cries.  For hours she would open her mouth as wide as she could and cry with a rasp due to swollen vocal chords.  That night I sent a text to family:

...by the end of the night I could tell she was getting restless.  They gave her normal nighttime meds and a hour later she still was not asleep. She moaned and grunted.  Even a very sad and very soft cry sometimes.  I could tell something was night right.  At 11:00 they gave her some oxycodeine and another dose of nighttime meds.  No help.  Kycie was awake the entire night.  Never even closed her eyes.  I felt so bad for her.  Doctor believes she has delirium.  Happens sometimes when kids come into the PICU with very few windows, are sedated and put on pain meds only to come right back off them.  It messes with their circadian rhythm (sleep cycle).  I told the doctor that Kycie's circadian rhythm is already messed up with her brain injury.  She said that makes more sense because kids who already have a compromised circadian rhythm are more often affected.  So poor Kycie, on top of everything, now she is delirious.  

Taking turns holding Kycie as she suffered from PICU delirium.

The fellow told me she had written a paper on PICU delirium and explained that, as opposed to adult ICU delirium, pediatric ICU delirium is usually under recognized and under researched.  Delirium is not permanent, but may be associated with other long term complications. 

Watching Jamie hold Kycie for hours as she would cry without even blinking her eyes was more than I could handle.  It was literally busting my heart into a million pieces.  Kycie had already suffered so much, how much more could she take?  Like Wolterstoff I found myself crying to God in anguish.  Why?  This is not fair?  She is just a little girl, why does she have to suffer this much?  All I could do was shake my head in disbelief in what was happening.

Jamie trying to comfort Kycie during a particularly difficult time.  Studies show an increase in morbidity and mortality of critically ill children who exhibit PICU delirium.

I don't know if I have the answer, but I think Kycie's suffering was a way for her to connect with her Savior.  So that she could personally and intimately identify with Him.  I do not know who Kycie was before she came to earth, but from the amount of suffering she endured and the identifying marks of Jesus she bore, I am positive she was one of the great and noble spirit children of our Heavenly Father.

Not completely relieved of delirium symptoms, Kycie was able to send dad a smile.  I had gone back to St. George to work and Jamie sent me this picture saying "come get us." 

I have been told that grief is one of the most pure forms of love.  Watching Kycie suffer in the PICU again caused me immeasurable grief which resulted in limitless love for Kycie I did not know I possessed.  I then knew that if asked, I could love her enough to let her go.  I also knew that she loved her mom and dad enough that she would not leave unless we said it was okay.

Released more than a week sooner than expected, the three of us pulled into St. George the evening of Wednesday, July 8th.  Kycie's brothers were still with grandma and grandpa in Monroe.  We asked that they keep the boys there until Friday to give us a chance to get settled and give Kycie a little more time to recover.  Primary Children's had already scheduled a routine follow up Friday afternoon in St. George with Kycie's pediatrician.  He was happily surprised to see us as we walked into his office.

Visiting NTU staff before heading back to St. George.

She is not going to make it.

Sleep was a true luxury over the past 5 months, but even this was stretching it for me.  I did my best to concentrate through work knowing Kycie and Jamie were at the hospital.  The lack of sleep was also making me extra emotional.  There was a constant lump in my throat and tears filled my eyes each time I let my guard down.  My mind wandered to the time Kycie got mad at me.  I'm pretty tough on our boys, but I rarely even raised my voice at Kycie.  She was too perfect.  I thought about the time I yelled at her and she ran to her room.  After a few minutes I felt bad and went upstairs to find her.  Kycie had crawled under her bed and was crying.  I knew I was tired because I normally wouldn't allow my thoughts to drift to sad memories like that.  I was able to get off work an hour early and arrived at the pediatric unit just after 4:00 on June 30th.  

Jamie was a beautiful mess, so I told her to go home and shower while I watched after Kycie.  She had been doing great all day.  She was on 1.0 liter of oxygen and only seemed uncomfortable when she coughed.  There was a nurse shift change just about the same time Jamie left for home.  I stayed in Kycie's room and watched her oxygen levels.  They kept dipping below 90 so the nurse came in and increased her oxygen to 1.5L.  About 15 minutes later they dropped again, and again the nurse increased the oxygen to 2.0.  Then 2.5 and finally 3.0.  In less than an hour Kycie went from 1.0 to 3.0L of oxygen to keep her saturation levels above 90.  She also seemed to be much more uncomfortable than she was when I first got there.  Her breathing rate had increased and she was grunting and groaning more.  I pointed this out to the nurse, but because she had just started her shift she didn't have anything to compare it to.  A call was made to Kycie's pediatrician.  He was still in clinic and would come as soon as he could.  In the mean time, he ordered another chest x-ray.  Jamie and her brother arrived just as they were finishing the x-ray.  Her brother assisted me in giving Kycie a blessing.  Things didn't feel right, something was off.

I looked out the door and could see Kycie's pediatrician sitting at the nurses station looking at a computer.  I went out and sat next to him.  With a very deflated look on his face, he turned to me and said, "I got you a flight to Salt Lake."  

He reviewed the x-ray of Kycie's lungs from early that morning.  He then compared them to the one that was just taken.  "Kycie has pneumothorax".  It is when air leaks into the space between your lungs and chest wall.  The air is pushing on the outside of Kycie's lungs, causing them to collapse.  "I'm so sorry" he said.  "LifeFlight has been dispatched and they will be here in about 15 minutes."  That is 15 minutes to get to the hospital.  Load Kycie up and transfer her to the airport via ambulance.  That will be another 30 minutes.  The flight is 50 minutes and then another 20 minute ambulance ride to Primary Children's.  Almost 2 hours before Kycie will get to PCMC.  Jamie will fly with Kycie and I will have to drive.  It is nearly a 5 hour drive so I started to make phone calls to get things arranged.  

Kycie was noticeably getting worse.  Tears would roll down her cheeks as she would groan in pain.  I was still making phone calls when Kycie's doctor came back into the room.  "Primary Children's called and canceled our LifeFlight.  They are scrambling their own team together in Salt Lake."  So that means LifeFlight won't even get to Kycie for an hour and a half at the soonest! 

"Why did they do that?" I asked.  He shrugged his shoulders and said, "I am not really sure."  I walked around confused.  I struggled to collect my thoughts and make sense of it all.  I was beyond exhausted, Kycie was getting worse by the second, nurses and doctors start to scurry around the hall and Jamie was calling family to help get the boys to Kycie's room ASAP.  What is wrong with our LifeFlight?  Is Kycie that complicated that she needs a specialized team?  She must not be too bad if they are willing to risk two more hours.  Do they know something I don't know?

Keaton still comes down into our room a few times a month crying because he misses Kycie.  He struggles to focus his thoughts on positive memories.  It is easy for Keaton to think about all the times he teased Kycie and was mean to her.  It is hard for him to remember how he would sit with her and play beanie boos.  He didn't like beanie boos at all, but he would play with them if Kycie asked.  It is difficult for Keaton to remember things like helping Kycie learn to ride a bike and teaching her how to catch a lizard.  I guess for an 8 year old it is harder to forget the guilt of teasing his little sister than it is to remember the joy of being her friend.

The boys had all had a chance to talk to Kycie and give her a kiss.  None of them said goodbye as they had no doubt they would see her again.  They had attached a mask to Kycie to help with the oxygen and staff was scrambling all over.  Keaton stood on the side of his little sisters bed and held her hand.  In one of the most tender displays of charity, Keaton softly held Kycie's hand and whispered to her.  I couldn't hear what he told her over the beeping of machines and background chatter.  I hope to one day know what his spirit was trying to tell hers.

At this point I really don't know what was going on.  I can only assume on most of it.  It was decided that they couldn't wait for PCMC crew to get there and that Kycie needed to be intubated.  The room got really intense really fast.  Jamie and I stepped into the doorway and watched as a team of doctors and nurses surrounded Kycie.  I felt a sense of unknown, like they were doing this for the first time.  It was obvious that something wasn't right when at one point one of the doctors left the room and made a dead sprint to the end of the hallway.  He was gone for about 15 minutes while the rest of the crew working on Kycie spoke to each other slowly, loudly and with emphasis on clarity.  

Angles speak by the power of the Holy Ghost.  Sometimes it is soft and quiet, other times it makes the hair on your arms and neck stand up.  Sometimes they speak to you but it takes days, weeks, months or years before you understand what they said.  Jamie went back into Kycie's room and sat on the floor.  She brought her knees up to her chest and wrapped her arms around them.  "She is not going to make it!"  Loud and clear.  Jamie watched for a second time in less than 6 months as a team of doctors tried to insert a breathing tube into her little girl to save her life.  This time she is not going to make it.  I am watching my child die.  

We found out later that a lot of the tension and stress while intubating Kycie was because they did not have the proper tube to intubate.  There must have been a discussion about just using the tube they had available or to wait for the proper tube.  The tube that the doctor wanted had a balloon on it to help keep Kycie's airway open.  For some reason it wasn't stocked in the pediatric unit and one of the doctors had to personally run to the main hospital a few miles away to get it.  To make things worse, the only ventilator available in the pediatric unit wasn't the one Kycie needed.  The one Kycie needed was 2 miles away at the main hospital.  When I learned about this, it started to make sense why there was so much confusion and tension in the room.

Honestly, the doctors and nurses did an absolute amazing job with tools they were given.  They were able to think on the spot, improvise with what they had and successfully intubate Kycie.  They manually compensated for what the ventilator couldn't do until the crew from Primary Children's arrived.

I needed to get on the road as Jamie and Kycie would get to Salt Lake hours before me.  The PCMC crew hadn't arrived at Dixie Regional yet by the time I left.  It was around 11:00 pm when I started the long drive on little sleep.  The drive seemed eerily familiar.  I remember driving the first time Kycie was LifeFlighted and thinking "I hope the plane doesn't crash."  This time I was sick with the thought of her passing away before I got there.  Just before I left Kycie's room, I leaned down and kissed her ear.  "You have to wait for me Kycie!  You have to at least wait until I get to Salt Lake."

The specialized crew had gathered around Kycie and prepped her for a chest tube.  A chest tube is placed to drain the air that has collected around Kycie's lungs.  You first prepare the area of that the tube will be inserted and inject an anesthetic.  An incision is made between two ribs and the tube is placed and secured.  They prepared and disinfected under Kycie's left armpit.  An injection of anesthetic was given and they prepared to make the incision.  "Check!  Left side or right side?"  Someone checked the chart again.  "Right side.  Not left side.  Start preparing her right side."  

It was pretty messy and even embarrassing but Kycie was finally safely loaded onto the airplane and they lifted off.  No pediatric tubing in the pediatric unit.  Proper pediatric ventilator not stocked on the pediatric floor, or even correct building.  Preparing the wrong side of Kycie's chest for placement of chest tube.  However, despite the rough evening, Jamie felt at complete ease on the plane with the special team tending to all of Kycie's needs.  An peaceful feeling came over Jamie and she slipped in and out of sleep. Kycie was in bad shape, but she was looking better and was in good hands.

The sun windows of Kycie's enclosed PICU room at PCMC were glowing with sunlight.  I had fallen asleep on a chair with my head resting on Kycie's bed and my hand holding her hand.  This go around was going to be different.  Everyone already knew us.  They knew Kycie.  I wasn't sure if they knew us from the our long first round at the PICU or if they seen Kycie's news story or even followed her Facebook page.  Jamie and I were much more calm.  We took the time to talk to the attending doctors, fellows, residents, nurses and technicians.  Kycie was still sedated and intubated when a man walked into our room, asked the nurse to leave and shut the door.   

How Much Can She Take?

Before Kycie was discharged from Primary Children's Hospital in July of 2015, a team of doctors and nurses sat down with us to discuss her care and what we might expect.  Kycie had made some miraculous and amazing progress during her 111 days at the children's hospital.  She had surpassed all expectations to the point that her rehabilitation progress had plateaued and it was time for Kycie to go home.  However, facts are facts.  My background is science, major in biology, minor in chemistry and doctor of optometry.  I have faith, and Kycie's experience helped grow my faith in ways I couldn't imagine.  However, I'm also a realist.  People would send us messages saying if we believe and have faith Kycie would return to the way she was before her injury.  The scientist in me told me that would never happen.  There was too much damage.  I had faith that she would progress and get a little better, but some things cannot be reversed.  Of course all things are possible with God, but I also have to believe in the will of God.  Kycie had a severe traumatic brain injury caused by lack of oxygen that has affected her profoundly in many ways.  Kycie cannot feed herself, walk or talk, but those were just some small problems considering.  Her body's ability to control body temperature, digest and properly process food and the fact that her pancreas has decided it doesn't want to produce insulin anymore are all much more difficult to manage and are largely out of our control.  Some of the most basic reflexes we all take for granted every day were significantly depressed for Kycie.  Kycie could not give us a good, productive cough when something was in her throat.  This would prove to be a problem and the doctors knew it.  

They went over a  stack of papers with things to do for Kycie.  It would take us 30 minutes just to prepare her medications.  We gave her medications four times a day and that adds up to 2 hours each day preparing meds.  Actually giving Kycie her medications, and then slow process of feeding her blended food through her g-tube took another hour.  Six hours a day would be spent preparing and then feeding Kycie.  It was important to sit next to her the entire time to make sure she didn't throw up.  Throwing up could cause Kycie to aspirate and she would drown in her own vomit if someone wasn't right next to her.  

Don't forget diabetes!  With everything going on we were still in Kycie's "honeymoon" phase were sometimes her pancreas would produce a little insulin and others nothing at all.  This complicated knowing what to do with her dosing of insulin.  Large swings of high and low sugars were pretty common.

The medical team continued to explain all these things to me and Jamie but there was a question that kept nagging at me.  I finally had a chance to ask.  "What is Kycie's life expectancy?"  They all kind of looked at each other before the attending physician told us that she expects Kycie to live as long as any other kid...I guess...Of course....Well...We need to remember a few important things.  Diabetes.  A type 1 diabetic has a life expectancy of about 12 years less than the general population.  Finally, after working through the question in her head and out loud for a few minutes the doctor said, "pneumonia is your number one concern."

Having Kycie home was something I cannot adequately describe.  I could spend hours and hours writing about the little things that happened in our house while Kycie was home.  Like most things, time and retrospective thinking helps to put the puzzle pieces together.  Even now I will have moments that bring me back to Kycie and I understand life just a little better. It is obvious to me now that we were running on borrowed time.  Truly, Kycie should have left us back on January 30th.  It makes me think of the poem, footprints in the sand, by Mary Stevenson.  She talks about looking back at her life and noticing two sets of foot prints in the sand.  Her own and the Lords.  It troubled her that during the times of greatest sadness and trial she only noticed one set of foot prints and asked the Lord why He would leave her during such times of peril.  

"He whispered, My precious child, I love you and will never leave you
Never, ever, during your trials and testings.
When you saw only one set of footprints,
It was then that I carried you."

There was no doubt we were carried during the 6 weeks Kycie was home.  Some experiences too sacred to share.  We didn't leave home too much.  We took Kycie to get ice cream one time, once we took her to get a slush and once to the mall.  All excursions were short as the heat of the St. George summer was more than her body could handle.  Unable to regulate her body temperature very well Kycie easily became uncomfortably hot. 

A mild summer cold went through our home the last few weeks of June.  Some of the boys had a little cough, and Boston started to get a runny nose.  We did our best to keep the boys away from Kycie, but it was nearly impossible with Boston.  He loved to hold her hand, kiss her cheeks and sit on her lap.  It was hard to know for sure, but I was starting to suspect that Kycie was getting a cold too.  Concerned, we cautiously accepted an invitation to ride up to Pine Valley mountain for some tin foil dinners and to escape the heat for an afternoon.  It was nice to take Kycie outside and not have her overheat.

It was Sunday, June 28th.  Kycie definitely had caught what the boys had and we had been struggling for a few days now keeping her comfortable.  Jamie took the boys to church and I stayed home with Kycie.  I did my best to prepare meds and meals alone, Jamie is much better at it than me.  Each time before a meal we check Kycie's blood sugar.  She was high, in the 200's.  I dosed Kycie's insulin appropriately, gave her a shot and then started her feed.  I watched Kycie's Dexcom through her meal and it slowly kept going up.  Within 30 minutes it had two arrows up and I didn't now what to do.  Her blood sugar was approaching 400 and I had just given her lantus and humolog injections of insulin.  I worried that if I gave her more she would crash, but worried if I didn't she would go into DKA.  This was our first experience with the madness of T1D.  Feeling helpless, I put a call into the nurse at Primary Children's.  Kycie couldn't tell me if she didn't feel good, she could only grunt and groan.  

That night Jamie sat at Kycie's bedside and wept.  The weight of the situation pressed Jamie into an unusual dark corner.  How much can Kycie take?  She is obviously struggling to breath, her sugars are all over the place, she is not sleeping well and she keeps throwing up.  Monday we got Kycie in to see her pediatrician.  He listened to her lungs and ordered a chest x-ray.  The x-ray was clean so he started Kycie on a strong antibiotic.  He feared it was viral, but we decided to try an antibiotic just in case.  

That night, Kycie was still struggling to cough and catch her breath.  Jamie got Kycie into the bath and started to wash her hair.  This typically would calm Kycie but this time she started to cough.  Slowly a hint of pink rolled out of the corner of her mouth.  Jamie swabbed her finger into Kycie's mouth and retrieved a good amount of blood.  A flash of panic swept over Jamie as she screamed for help.  We quickly got Kycie out of the bath and laid her down in front of our bed.  We got her dressed into her pajamas but couldn't find any more blood.  Was it blood?  Kycie let out another cough and again she spit out a little blood.  We were able to get a hold of the pediatricians office and speak to the nurse and later the doctor.  

Our poor doctor!  He inherited Kycie as a patient when we brought her home in May.  By far his most complicated patient who, I'm sure, stressed him out just thinking about her each night before he went to bed. 

"Is the blood just pink or are there small bubbles in it?"  Just pink could be that the dryness and coughing caused the back of her throat to split and bleed.  If the blood had little bubbles in it, it's likely coming from her lungs.  We did our best to inspect and determined that there were no bubbles.  A local medical supply company delivered a pulse oximeter after hours to our house so we could watch her oxygen levels through the night.  Kycie didn't sleep much Sunday night, and both Jamie and I would take turns throughout the night adjusting her, suctioning mucous from her mouth or just laying by her.  Both of us were running very low on sleep so I offered to take the first shift and Jamie could sleep.

I laid on the floor at the foot of our bed next to Kycie's bed.  I didn't have a good feeling.  This was all new and uncomfortable.  A few weeks before, I had a conversation with Kycie's pediatrician.  I told him I was concerned that every time Kycie gets sick they would LifeFlight her to Salt Lake City.  St. George does not have any pediatric specialists and the adult ICU doctors wouldn't be comfortable caring for her.  Dixie Regional Hospital draws from over 250,000 people, but they have never invested into pediatrics.  They have a NICU, but no PICU.  He assured me that he would do everything he could to keep Kycie in St. George so we wouldn't have to make the long commute if anything were to happen.  To get to Primary Children's on a fixed wing aircraft takes almost two hours, if the airplane and LifeFlight crew are ready at time of need.  I thought about how isolated we were in Southern Utah.  I wondered if I was making a mistake by living here.  I thought about life, and how drastically and quickly mine had changed.  I thought about a lot of things because about every 10 minutes Kycie's pulse oximeter alarm would go off indicating her oxygen level dipped below 90.

For most of the night Kycie's oxygen would stay right around 100.  It would dip below 90 but bounce up quickly.  Around 1:00 a.m. I noticed her oxygen dipped into the 80's a few times then would hang out in the low 90's.  I woke Jamie up and we watched her close for another half hour.  Now it was consistently below 90 and a few times into the high 70's.  I shook my head and looked up.  "Really?  What am I supposed to do?"  We decided to call a relative to come stay with the kids and we would get Kycie to the emergency room.  I held Kycie and Jamie drove.  As we pulled out of our dive way "Fight Song" came on the radio.  I cried all the way to the hospital.

The ER doctor came into the room as Kycie was now on oxygen.  "This is pretty easy for me, I am admitting you to the pediatric unit."  The pediatric unit is located at the old hospital a few miles away.  It was almost 5:00 am as they loaded Kycie and Jamie onto an ambulance for the short drive.  I decided to go home, shower and get ready for work.  I had already missed so much work and felt we couldn't miss more days.  Before going to work with absolutely no sleep that night and only a few poor hours of sleep the night before I stopped into Kycie's new room at the St. George Pediatric unit.  

Kycie was doing much better as I left for work.  However, within 10 hours things would drastically change.  Events that would cast serious doubt in my mind and cause me to  ask very difficult questions.

Welcome Home Kycie

“Josh, pull over quick!”  Kycie had just thrown up for the third time in two hours.  Every time we would feed her, she would throw it right back up.  This was a problem as we had just dosed her insulin and her blood sugar was plummeting.  I pulled our heavily loaded Yukon XL onto the right shoulder of Interstate-15 and quickly ran around to the back of the car to grab what I could to help.  The Yukon was stuffed tight with Kycie’s wheel chair and months of living supplies from the hospital.  Kycie hadn’t even been released form Primary Children’s Hospital for 5 hours and I am already looking for my escape route.  The rain had quickly soaked through my jacket and the passing cars sprayed me with a muddy mixture of water and dirt.  Jamie had undressed Kycie and was trying to clean her off best she could while I held up a towel to shield them from the relentless rain, at the same time allowing the smell of an orange color puréed food/vomit to escape the crowded car.  I felt bad for our two passengers, Autumn and Emily, who had come to help.

We had no idea how Kycie would handle the 310 mile drive from Primary Children's Hospital in Salt Lake City to her house in St. George.

I handed Jamie a container of apple juice that would be used to try and bump Kycie’s blood sugar up.  Kycie cannot swallow, so food and liquid must be pushed by hand with a 50ml syringe through her g-tube.  Her glucose meter read 45 and I was pretty sure there was no food left in her belly as most of it was in her car seat or on the back side of the passenger seat.  No doctors to help, no nurses to call on.  No bed to lie her down on or a sink to use.  Jamie and I had to rely on the training we received at the hospital and try and keep a cool head.  We "burned" our exit strategy 111 days ago.  We were 100% committed to taking care of Kycie, even when it seemed like we were trapped and we had exhausted all of our strength.  We had to dig deep and find a way.

You see, in 1519 there was a Spanish Conquistador named Hernán Cortés that landed on the inland plateau of Mexico.  Cortés and his 600 men, 16 horses, and 11 boats set out to do what no other army in the previous 600 years was able to do.  Conquer an empire and colonize Mexico.  No matter his motives, Cortés was able to motivate, inspire and embolden his troops to do the impossible.  Shortly after the army of Cortés landed on the seashore, they marched inland off the sandy beaches of the Yucatan Peninsula toward their enemies.  It was then that Cortés gave the order: “Burn the boats.”

The decision to burn the boats was bold and could have backfired.  If Cortés and his men were on the brink of defeat, there wasn’t an exit strategy in place to save their lives.  With no way out, they had two choices – die or fight with enough character to ensure victory.

The first few days in the hospital were very difficult for our family.   Not knowing if Kycie was going to live or die always had us on an unwelcome roller coaster of emotions.  They explained to us that the areas of Kycie’s brain injury controlled most of her unconscious and autonomic functions like heartbeat, breathing and body temperature just to name a few.  These automatic functions, once life support was turned off, would likely stop and she would die.  If she doesn't immediately die, we are looking at the possibility of Kycie living out the remaining days of her life confined to a bed in a vegetative state.  In those early days at the hospital, Kycie was able to give us a glimmer of hope when she cracked open her eyes for a few seconds.  Letting her parents know that she was still in there and that all hope was not lost.

The night after Kycie opened her eyes, Jamie and I took up our regular positions where we keeled on either side of the bed with Kycie in the middle laying on the bed.  We had stayed up late the night before discussing our options and what was in the best interest, not only for Kycie, but also for our other 5 boys.  We decided we were going to leave it up to Kycie, having faith in our Heavenly Father that he would grant her the agency to choose.  As we knelt across her with our hands intertwined on her chest, we told Kycie she could go heaven if she wanted.  Mom and dad would be very sad and would miss her very much, but we would be okay and completely understand her decision.  However, if Kycie decided to stay and fight, we would be 100% committed to taking care of her.   In a sense, we told Kycie that we would burn the boats.  We would have to burn the vessels in our mind that was keeping afloat anger, fear, doubt and frustration.  That night the three of us decided to go all in, and no matter how hard things would get, there was no turning back.

We were back on the freeway again trying to get Kycie back to her own bed for the first time in over 100 days.  Many friends, family and complete strangers were also anxiously awaiting her return.  The St. George police and fire departments had arranged an escort as we neared our home.  The community had gathered along the road with signs and banners while close friends and family crowded in front of our home, along with all of Kycie’s friends from pre-school and her church primary classes. 

I started to question our decision to give Kycie a homecoming as it started to look more and more like we might have to stop at the emergency room once we pulled into St. George.  Of course we were new at this whole diabetes game, even though she had been diagnosed almost 5 months ago.   Jamie pricked Kycie’s finger every 10 minutes and celebrated each raising point in her blood sugar.  Her low blood sugar had Kycie clammy, upset and shaking.  It was still raining as we pulled into the church parking lot on River Road in St. George to meet with the police and fire escort.  Kycie was naked and wrapped in a blanket so Jamie quickly changed her into her last clean pair of clothes and held her tight as we followed a police care and fire truck toward our house and towards Kycie’s brothers.  Her blood sugar had slowly climbed to 65 and this seemly endless 5-hour drive was almost over.

A steady rain soaked the desert for almost the entire 310 mile drive south, but it became more intense as we pulled into the red rock landscape of St. George.  However, as the escort was only a mile from our house the rain eased and the clouds started to break. 'Welcome Home Kycie' banners were hanging from fences and on both sides of the street you could see children standing close to their parents  hoping to catch a glimpse of the little girl they had all been praying so earnestly for.  Still unsure how Kycie would react to loud noises, Jamie was reluctant to roll down the window for very long and kept her hand over Kycie's ears.  I could no longer swallow my tears as we pulled into our cul-de-sac and saw friends waving, family crying and dozens of little children holding a Welcome Home Kycie sign in front of our house.

He parted the heavens and came down (2 Samuel 22:10)

Rain clouds everywhere, except over Little Valley where Kycie was being welcomed home. (picture sent to us from someone in St. George.)

Amazingly, “He parted the heavens and came down” (2 Samuel 22:10).   The clouds literally opened up over our house as I put the car into park.  Pictures were sent from all over town capturing the scene of an angel’s return home in Little Valley.  Sunbeams broke through the dark sky and a rainbow arched over Washington fields.  Jamie rolled down the window and held her crippled little girl tightly in her arms as the children started to sing I Am A Child Of God. 

Police car and Fire truck in front and another car and truck behind us as we make the final turn up our street.

Kycie's friends gather for a picture before she arrives.

After singing I am a child of God, the children all let go of their pink balloon.

“I am a child of God.  And He has sent me here.  Has given me an early home.  With parents kind and dear.  Lead me, guide me, walk beside me.  Help me find the way.  Teach me all that I must do.  To live with him someday.”

We have sung 'I am a child of God' to Kycie since she was just a baby and was always a favorite song to sing her in the hospital.  It meant so much to us to pull up and hear the primary children sing this to Kycie.

With tears streaming down Jamie's cheeks, mother and daughter listen to the beautiful voices of the children singing to Kycie.

There were so many special, life long lessons learned that day.  One touching lesson for me was from a picture I received of Jamie holding Kycie.  Reminded of a painting depicting Matthew 9:35 of a mother holding her crippled daughter before Christ.  

It is possible that the mother in this painting had also burned her boats.  Having to destroy doubts, feelings of inadequacy, thoughts of self pity and lay everything upon the altar of Christ.  This is not lip service alone.  She was a doer of the word, not a hearer only.  How far did this mother have to walk to bring her sick child to Jesus?  How long had she taken care of her beautiful daughter before presenting her at the feet of Christ? 

We were still in the middle of our family storm when the picture below was taken.  We did not know what was ahead of us.  “O man of God, … follow after righteousness, godliness, faith, love, patience, meekness.  Fight the good fight, lay hold on eternal life.” (1 Tim. 6:11-12).  We cannot afford to have one foot in the fight, and one foot out!  We must “press forward with a steadfastness in Christ, having a perfect brightness of hope, and a love of God and of all men.” (2 Ne. 31:20)  Jamie and I were fully committed and had burned our boats long ago. 

“The work of a mother is hard, too often unheralded work. Please know that it is worth it then, now, and forever.” —Jeffrey R. Holland  

Keaton smile is priceless and Bryton holds Boston on his shoulders like he always did with Kycie.  You can see joy in everyones eyes.

Jamie carried her once spunky and full of life little girl up the driveway that she had so often played on.  Her legs were bent over one arm, her body sagged in the middle and her head cradled in Jamie’s bosom.  As the clouds began to close the sunbeams slowly faded and a light sprinkle of rain started to fall again.  Worried about Kycie’s low blood sugar, feeling exhausted from the endless drive from Salt Lake and with the lingering reality of the difficult road ahead, Jamie walked into the house after just a short wave of appreciation to all those who had come.   

Kycie was carried into our bedroom and was laid down on the make shift bed we had prepared in the corner next to the window.   After getting her settled, with a bath and a fresh coat of baby lotion, the commotion of the day started to fade.  Finally, after 111 days, our family of 8 were all under one roof again.  A tangible feeling of peace and serenity filled our home, as the eight of us were able kneel in prayer to regroup, reset and retire for the night.  

We were not alone that night or any night as a host of angels were round about to bear us up.  Getting Kycie home did not make things easier, in fact things were harder.  However, although things were harder, they were better.  Our girl was finally home.

I have reflected a lot about this day that happened one year ago.  I never noticed the break in the clouds and a pause in the rain that day.  I was too caught up in the moment to admire heaven smiling on our little girl 58 days before she would return to her Savior's arms.  We were lucky, because there were so many other people paying attention, taking pictures and documenting the event.  Had it not been for them, I would have missed this special gift from God.  There are so many families going through tough and difficult times.  Families who have lost a child or a wading through trial after trial.  I promise you, heaven has and does open up for you.  There are sunbeams over your house, but like me, you might not notice them.  I know God sends angels to help us even before our darkest hour.  Look back, and you will see what I mean.  Kycie's heavenly gift to our family was not unique.  However, the fact that so many people witnessed it was distinctly special.  Kycie is sealed to me and Jamie forever and this day was a powerful confirmation of that truth. 

KYCIE'S WELCOME HOME VIDEO

by AUTUMN SHIPP

Patch was one of the first to take care of Kycie after she was moved to the Neuro and Trauma Unit at PCMC.  He spent many nights with Jamie and Kycie and always treated Kycie like a princess.

Patch was not working the day Kycie was discharged, so he had to give an early good bye.

Tara was Kycie's Occupational Therapist.  She had to give Kycie an early goodbye as she was not working the day Kycie was discharged.  Every therapist loved Kycie like their own and it was an emotional goodbye.

Autumn Shipp came with us for Kycie's last day at PCMC and to make a video to help us remember this special day.  She took this picture of the three of us before we left the hospital.

Sealed together for time and all eternity

One of the many kids that worked in the gym with Kycie each day.  This guy has made amazing progress and I seen a video of him the other day on his stake board.  A true miracle if you knew his story.

Another miracle.  Severe head trauma from a high school rodeo accident, Garth and Kycie made an instant connection.  He is doing great today and is back on the rodeo team.

We didn't get a picture with all the therapists, but was happy to see this picture of Kycie and one of her Physical Therapist Amie.  She usually worked weekends with Kycie when dad was at the hospital.  She always pushed Kycie to improve with love and determination. 

Autumn Shipp is a rock star.  Dealing with her own family trials, she took time away from her brother Britton to help capture the day for us.  Britton is from St. George and was in a 4-wheeler accident that left him with a severe traumatic brain injury.  She does an amazing job capturing the real life moments and are thankful for what she did for our family.

Courtney was one of the many nurses that was there for Kycie every single day.  I wish we could have got a picture of all the nurses as they were truly angels on earth while at the hospital.  Many nights they would spend not only taking care of Kycie, but also sitting and holding Jamie through the difficult times.

She can get in trouble for kissing her patient, but this little Courtney was life saver.  I love this picture of her kissing Kycie goodbye.  

I spent hours and hours laying just like this.  Talking, singing or just listening to Kycie breath.  

Nurses and therapists gather to blow bubbles for Kycie as she leaves her pod and goes back home.

Christina was Kycie's nurse practitioner that was in charge of Kycie's care every week at the hospital.  The rehab doctors would rotate and Kycie would get a different doctor every few weeks.  Christina was always there and became very close friends with Jamie.  She is perfect in every way and dearly missed. 

Daxton and his cousin wait for Kycie's arrival.

Waiting for Kycie

Pulling into the cul-de-sac

Boston seems more interested in the fire truck

A quick hello

and thank you

and goodbye

After Kycie went back into the house

Most likely would have been Kycie's Kindergarten teacher.  Mrs. Ybright lived around the corner from Kycie.

Finally a ride in a real fire truck.

Boston

Trey

Bryton

After getting Kycie situated in the house with some family, Jamie came back out to thank all those who had come.

Jamie missed this little princesses growing up after 5 months in the hospital.

The sun disappeared and the rain began to fall again.

Jamie talking to Kycie and telling her she is home again!

Getting ready for a bath always brought tears.

Boston was fast asleep, but we were able to get a picture with this crew.  Kycie was wiped out and ready for some sleep.

And finally a kiss and hug from each of her boys before they went to bed.  Keaton.

Treyton

Daxton

Bryton.  There were no dry eyes in our house that night.  Sincere prayers of thanks were offered.

January 30th. -Ten Things-

Instagram Post From Jamie:  "Say some extra prayers for this girlie please.  She is being life flighted to primary children's hospital for really bad diabetes.  So glad we figured things out.  Nothing breaks your heart more than to see your child hurt.  Love you Kycie Jai!!!" 

Kycie sleeping while waiting for LifeFlight to arrive.

I hung up the phone in disbelief.  LifeFlight?  Jamie told me the labs had come back and Kycie's blood sugar was extremely high.  1134, where normal can be between 90 and 110.  As a precaution, they recommend flying Kycie to Primary Children's Medical Center (PCMC) in Salt Lake City.  It would take a little while to get Kycie ready, and LifeFlight would not be there for another 50 minutes or so.  My MRI would take about 20 minutes.  I decided to have them push me through and finish the MRI of my shoulder.  The MRI machine sounds like a jack hammer and I am supposed to lay still in one position until the scan is finished.  I couldn't collect my thoughts and my mind jumped from rational to irrational.  

I couldn't believe they were LifeFlighting Kycie because of diabetes.  I obviously didn't understand the disease and how deadly it can be.  I fought back tears as the scan seemed to take forever.

They finished and I was quickly shown to the dressing room.  I changed and a nurse or doctor ran with me through the halls from imaging to the emergency department.  When I got to Kycie's room it was full of people.  Nurses, LifeFlight, family and friends.  I believe they were just about to get her started on insulin or had just started her on her insulin drip when I arrived.  

Kycie was pretty quite, crying out every once in a while for Jamie or for a drink of water.  Jamie would feed her ice chips and reassure her that everything was going to be okay.  I started to scramble to get things arranged at home so I could go north with Jamie.  They told me that I was not allowed on the plane with Kycie because it would be too much weight.  Jamie was permitted to go, but I would have to drive.  Jamie's little sister would go to the house before me and pack a few bags.  It was Friday evening around 3:30 - 4:00 pm.  I assumed that we would be in SLC through the weekend and was hopeful to get back to work by Monday.

Getting ready for LifeFlight.  Fluids going, waiting for insulin drip.

Kycie moved to the gurney in preparation to transport to the airport.

Not understanding what is going on, Jamie comforts Kycie.

There was a lesson in a Sunday school meeting a few weeks before that had a profound impact on me and Jamie.  It was during the last hour of the three hour block of meetings.  I'm not sure what the lesson was about, but we were discussing prayer, particularly family prayer.  The guys in the room were kicking around ideas that could help make family prayer more reverent and spiritual.  Funny stories were told about how fights can break out during family prayer between siblings, or how the prayers become repetitious and insincere.  

Someone raised their hand and shared what their family was doing during family prayer.  He said a rule was made that before you can "ask" the Lord for anything, you must first "thank" Him for TEN things.  I thought this was a good idea. Our kids prayers usually sounded something like, "Dear Heavenly Father, thank you for this day. Please bless..... Please bless.... Please bless...."  

I discussed the idea with Jamie and we put it into practice.   It surely didn't help with the reverence part of things, but it did help the kids slow down in their prayer and think about what they were thankful for.  

Before prayer at the Terry house, we must first decide who is saying it.  We try and go in order, but Kycie was never able to understand why it wasn't her turn every single night.  Many nights we ended up saying two prayers.  Whose ever turn it actually was, and then one from Kycie.  I would close my eyes and hold both hands up.  Each time Kycie or one of the boys would say something they were thankful for I would count down from ten.  The kids would close one eye but keep the other eye open to see the count down.  They would start to giggle as whoever was saying the prayer would start to struggle to think of things they were thankful for.  We would start to hear things like, "I'm thankful for carpet.  I'm thankful for air.  I'm thankful for fingernail clippers."  Their eyes would scan the room looking for things they are thankful for.

It was time to go.  I had already given Kycie a priesthood blessing during a brief moment of privacy before they moved her to the gurney.  I hugged her tight and told her how much I love her.  I assured her everything would be just fine and that mommy would be with her the whole time.  As they moved her into the ambulance I took one last picture and gave Jamie a kiss and hug.  They were loaded and ready for a short drive to the St. George airport.

At ten minutes to 5:00 the ambulance pulled away with my two girls.  It was raining in St. George and throughout the entire state of Utah that night.  It rarely snows in St. George.  However, during the 310 mile drive north to Salt Lake City there will be a nearly a 1,500 foot change in elevation.  It is the end of January and as the sun goes down, so will the temperature.

I ran home to gather bags and change vehicles.  I loaded the bags into my truck and made sure my mom had everything she needed to help with the boys basketball games the next day.  I could tell the boys, especially the older ones, were worried.  I gave them each a hug and headed out.  

It rained the entire drive, but thankfully never turned to snow.  One of the flight nurses told me she would call as soon as they landed.  The plane lifted off at 5:35 pm and it would take about an hour to get to SLC airport.  I had just passed Cedar City when I was talking on the phone with a friend from Richfield.  His son had been diagnosed with T1D a year earlier.  He told me to expect to be there for 3 or 4 days!  "What in the world could they teach me in 3 or 4 days?"  I was so naive, knowing absolutely nothing of what it takes on a daily basis to manage a child with T1D.  He said there would be classes on what T1D is, how it affects the body, what can happen if not monitored closely.  There would be classes with a dietitian who will teach you how to count carbs.  This was the first time I realized T1D has little to do with sugars and everything to do with carbohydrates. 

I hung up with him around 6:40 pm and was several miles north of Cedar City.  My truck alerted me to another incoming text message.  This one from Jamie.  "Call me now!  Kycie is having a seizure and they said they lost her vitals."  My heart sank.  Crazy thoughts had been going through my mind all night.  Silly things such as, what if the plane crashes?  Never did I consider something would happen to Kycie.  She was perfect in every way.  She had diabetes.  What could possibly go wrong?  

I immediately called Jamie.  When she answered she could barley talk as she was so upset.  "Kycie is having a seizure and I heard them say they lost her vitals.  I think we are losing her.  I'm so scared.  I have to go.  I'll call you later."  I accelerated the truck over wet roads and through the stormy night.

Jamie's mom was already on her way to the hospital and was ahead of me.  I still had over 200 miles to drive.  Jamie's oldest brother was already waiting at PCMC for Jamie and Kycie to arrive.  My dad and brother left to meet me in Scipio so I wouldn't have to drive alone.  

I passed Cove Forte and started into a small canyon.  Fog had settled and was mixing with the ever present rain.  The freeway turned sharply to the left and I almost didn't make the turn.  I told myself I had to calm down and slow down.         

Jamie and Kycie left the St. George airport via a fixed wing airplane.  The flight would be about 50 to 60 minutes and then they would be transferred to an ambulance for a 20 minute drive to PCMC.  Kycie slept for most of the flight, waking up occasionally asking for a drink.  The plane landed at the Salt Lake airport at 6:35 pm and everyone moved to the ambulance.  Jamie was sitting next to Kycie and had just texted her brother to tell him they were on their way when the crew started to shake Kycie and yell, "Kycie!  Kycie!  Kycie!"  The nurse pounded on the glass yelling, "Lights on!  Get to the hospital now!"  The ambulance suddenly became chaotic.  Jamie could only cry as they worked on Kycie and sped the final 15 minutes to PCMC.  The nurse did what she could to console Jamie.  She quickly sent me a text and then a text to her brother.  "Something is wrong.  Things are not good."

A team of doctors and nurses rushed Kycie into a room.  Jamie stood in the hall with only her brother to hold her.  She watched in disbelief as 10 or 15 different people worked to save Kycie's life.  As they attempted to intubate Kycie, she suddenly vomited.  They turned her to the side, and started to suction out what they could.  As the suction tube was in Kycie's mouth, she seized again.  This time, the extreme tightening of her body caused her to bite down on the tube so hard that her top front tooth busted off and the other tooth was handing by skin.

The rest is a blur for Jamie.  She remembers sitting in the hallway crying.  Her brother holding her and assuring her Kycie will pull through.  Jamie then finds herself in a Pediatric Intensive Care Unit (PICU) room with Kycie connected to all sorts of tubes and wires beeping unfamiliar sounds.  Kycie's eyes are closed, there is dry blood on her mouth and chin.  Her chest slowly moves up and down with the help of the ventilator. 

I pulled up to the front door of PCMC around 10:00 or 11:00.  I jumped out of the truck and ran inside.  Patiently waiting as security takes my I.D. and gives me a badge.  I do not remember walking into the room.  I do not remember what I said or did.  I do not remember what Jamie told me or what the doctors and nurses told me.  

I do remember the nurses leaving the three of us alone.  Jamie, Kycie and myself would spend countless hours alone together over the next 6 months.  This was the first of many prayers we would have together.  With the curtains closed, I knelt on one side of Kycie's bed and Jamie on the other.  I softly held my daughters hand and reached across the bed for my wife.  Holding my two girls hands, I closed my eyes but found myself unable to speak.  The whooshing sound of the ventilator would click with each breath.  

Just as I was composed enough to start a prayer, Jamie gave me a slight squeeze of my hand.  I opened my eyes and she whispered, "Don't forget to say 10 things you are thankful for." 

January 30th, It is not a good morning.

Kycie having a bath before going to the doctor.  She was very sad, not wanting to go back to the doctor, and obviously not feeling very good.

When a family goes through something traumatic, what are the long term consequences?  How will it affect me?  How will it affect my wife and my surviving children?  I was speaking to my neighbor the other day about different behaviors or traits our boys may express over the coming years. He is a counselor and social worker and was able to bring several things up that I hadn't thought of.  

The boys do not talk a lot about their feelings.  What they are thinking or how the past year has changed them.  My neighbor told me this is pretty normal, but that it is important to listen and talk in those moments they do open up.

A few nights ago Daxton came down stairs to tell me his older brother was crying.  I went upstairs to see what was going on.  Knowing which boy it was, I figured he was upset about Kycie.  I sat next to him on his bed and asked what was the matter.  Muffled through his pillow he was able to squeak out, "I miss Kycie."  Tears welled up as my mind raced to remember what my neighbor had counseled me on.  What was I supposed to say?  How do I respond?  Do I let him see my emotions?  

"I miss her too."  We sat there in the dark for a few minutes crying together.  Finally I said, "I cannot believe that the one year anniversary of when Kycie was LifeFlighted is just a few weeks away."  I asked him what he remembered from that day.  He cried a little harder and said, "I was home sick that day.  Mom was taking Kycie to the doctors office.  I was lying on the couch and Kycie stopped and said, Goodbye Bryton.  See you later."

Friday morning.  January 30th, 2015.  I left for the gym at 5:30 in the morning and Kycie was asleep on the floor next to Jamie.  She had a really rough night, up 3 or 4 times dry heaving and asking for something to drink. I got back home just before 7:00 and Kycie was still asleep.  After going through my usual routine of getting ready for work, I gave Kycie and Jamie a kiss goodbye and told Jamie to keep me updated on what the doctor says.  Jamie was already getting Kycie up so she could get to the doctors office as soon as possible.

Kycie was upset as Jamie got her into the bath.  Crying that she did not want to go back and she just wanted to stay home.  It was one of those moments of frustration and urgency.  Frustrated that Kycie was arguing about going back to the doctor, while feeling a sense of urgency to get there as soon as possible.  Jamie called the office as soon as it opened.  She left a message with the assistant about why she felt they needed to see Kycie today.  A little while later the office called and set Kycie an appointment just after 10:00.  Getting ready to leave, Kycie grabbed the nearest beanie boo and told Bryton goodbye.  Jamie, Kycie and Boston headed out the door for another check at the doctors office.

Just before 11:00 Kycie was evaluated again by her doctor.  Perplexed by the white plaques in Kycie's mouth and her continued sickness, Jamie was given the option of waiting one more day to see if she gets better, admitting to the hospital for possible dehydration or going to the emergency room.  Jamie decided to take Kycie to the emergency room.  

I got a call from Jamie as she was leaving the doctors office to tell me she was taking Kycie to the ER.  She was going to take Boston home first and my mom would meet her there.  I was winding down my own clinic at Richens Eye Center and still had about 5 patients to see.  

At the end of 2014 there was a pain in my left shoulder that was only getting worse.  It got to the point that that I couldn't even lift my arm up to the desk and move the mouse.  I figured I had torn something in my shoulder but wanted to wait until the first of the year to get it looked at so my deductible would reset.  Besides the occasional office visit or wellness check, our family doesn't get sick or visit the doctor. I had my shoulder evaluated the first week of January.  The surgeon figured a labral tear of my left shoulder, but needed a MRI to make sure.  I scheduled the MRI for January 30th at 2:00 p.m. 

I hung up with Jamie and walked into the exam room.  I started to look over the chart but my mind was hazy.  Kycie is going to the ER?  What exactly is wrong?  I have a MRI at 2:00, and Kycie should get there about noon.  Does she have cancer?  Why can't they figure it out?  I couldn't even make it half way through my exam when I had the overwhelming impression to leave.  Do not finish clinic!  Get to the hospital now to be with Jamie and Kycie.  I didn't even ask one of the other doctors to cover me.  I told a technician that I had to go be with Kycie and that someone else needs to see my remaining patients.

I got to the ER just a few minutes after Jamie and Kycie.  Kycie jumped right into my lap and hugged me tight.  She didn't talk much, but kept asking for a drink. The nurse at check-in told her no fluids until she sees the doctor.  As I sat and held Kycie, I could smell a fruity odor on her breath.  I asked Jamie if she had given Kycie some Starbursts or something.  "She had a little bit of slushy before we got here."  Huh.  Weird.  

Waiting room at the ER

At about 1:00 we were taken back and the nurse started to take a history and vitals.  They wanted a urine check so we walked back together and sat Kycie on the toilet.  I held the little cup under her and was astonished at the amount of her urine output.  She didn't talk much but would whine like she does when she doesn't want to do something.  We went back into the little room and waited for the ER doc.  

A little while later the doctor arrived and asked what was going on.  Head ache on Monday.  Got worse and so we took her to the doctor on Wednesday.  Given antibiotics for strep throat.  Thursday was worse.  She won't eat anything.  She will only drink fluids, especially the last day or two.  She has lost a lot of weight. White stuff in her mouth.  Last night she was up a lot peeing and drinking and threw up several times.  Acting a bit delirious and agitated. 

Suddenly it clicked in my head.  I have head these symptoms before.  I had a short lecture on it in optometry school and remember the symptoms of fruity breath, excessive urination and thirst.  I also remember there was a missionary while I was in Montreal that started to drink a lot, pee a lot and lost a lot of weight.  He was diagnosed with type 1 diabetes.  The doctor looked at us and said, "I'm not sure, but it sounds a lot like diabetes."  I then told him that I could smell a fruity odor on her breath in the waiting room.

FINALLY!  We have a diagnosis.  Diabetes.  Not cancer.  Not a mystery disease.  Not some weird swine flu virus that no one could figure out.  I then thought of all the kids and adults I knew with T1D.  This is manageable.  We can do this.  At least it is not cancer, it is not a tumor.  I was already late for my MRI but stayed to hold Kycie's hand as they drew blood.  She was so dehydrated the nurse struggled to get a good poke.  Jamie pushed me out the door and told me she could take it from here.  They had to run labs and that would take a little bit.  

Waiting for doctor to check on Kycie

Waiting for lab results

I ran around the hospital to the imaging department.  I quickly changed into a gown and they injected a dye into my shoulder.  They then wheeled me to another room with the MRI machine.  I had texted Jamie back and forth a few times until I had to give up my phone.  They were still waiting on labs.  I was lying on the table waiting to be pushed into the large circular MRI machine when I could hear my phone ringing.  It was behind the glass but they hadn't shut the door yet and I recognized the ring.  The ringing stopped and I heard them say, "okay, we are ready."  Just then my phone started to ring again.  Same ringtone.  When I'm at work I do not answer calls from Jamie unless she calls back to back.  That is her signal that she really needs to talk to me.  Slightly embarrassed, I sat up and asked if someone would bring me my ringing phone.  When I answered, Jamie was crying and said, "They are LifeFlighting Kycie!"

A Difficult Reflection - January 29th

Post From Jamie @kisses4kycie:  One more sick kid + a crazy busy toddler = one tired momma.  It's a good thing Bossy is so cute because he is one naughty boy!  @jjterry77

Bryton (12) sick with sore throat and loss of appetite.

When I think back on everything that has happened, Thursday January 29th is the most difficult for me.  I have heard the advice, I know how I am "supposed" to feel, but it is what it is.  When it comes to what I could have/should have done different, Thursday will always haunt me.

I was working in Nevada that afternoon when Jamie called.  "Something is not right.  Kycie is not getting better."  I reminded Jamie that she hadn't even been on her antibiotic for a full 24 hours yet and she cannot expect Kycie to improve that fast.  Daxton was feeling better and went back to school.  Our oldest boy is now complaining of a sore throat and feels like he is going to throw up.  I told Jamie to keep Kycie hydrated and keep trying to get her to eat something.  Caliente, NV is 110 miles from St. George, UT.  It takes just under two hours to get home.  I also lose an hour because the two states are in different time zones.  I had to rush home because I had a church basketball game that night at 8:00.

I got home just in time to change and get to the church for our game.  Kycie was asleep on the couch and Bryton was watching TV sipping on a drink.  The game got over just after 9:00.  Jamie pulled into the house just after I got home.  She had been running errands.  9:00 is usually pretty hectic at our house.  We have a set of things we would like to accomplish before 9:30.  Everyone shower or have a bath.  All homework must be finished.  Kitchen and living room picked up.  Read scriptures.  Family prayer.  Kids upstairs to brush their teeth and then everyone to bed.  So at 9:00 the kitchen was a mess, the living room had blankets and clothes all over, no one had showered and someone forgot they still had homework.  

I was cleaning up the kitchen when Bryton asked if I would toast him a bagel.  This is when my first red flag went off.  Bryton just started feeling ill this morning, and 12 hours later he is ready to eat something.  Kycie has eaten very little since Monday.  Right about then Kycie came out of the pantry crying because we were out of Sprite.  I knelt down and gave her a hug.  I begged her to eat something. Anything!  She tearfully said she would like a bowl of mini wheats. I poured the bowl full of cereal and filled it with milk.  Kycie blankly stared at the bowl then tipped it up and started to drink the milk.  

I couldn't believe it.  She hasn't eaten anything in days and all she will do is drink her milk.  I was worried, I was frustrated and I was growing impatient.  Not impatient with Kycie, but inside myself I could feel anxiety start to build.  Kycie looked horrible.  This was the first time I really noticed how bad she looked.  I grabbed a piece of cereal and held it to her mouth.  "Please Kycie, just eat one."  Sissy was so trusting, she would do anything I asked her to.  She never talked back, she always had a smile, and she was rarely sad.  Not wanting to disappoint her dad, she slowly opened her mouth so I could put the little mini wheat on her tongue.  I stopped cold before I got the cereal to her mouth.  

There was a green film all over Kycie's tongue.  I don't remember smelling Ketone's (fruity breath) but I'm sure she had them.  I had her open her mouth wider.  This film was all over inside her mouth.  I asked her if her mouth or throat hurt and she said no.  I was confused, I had never seen anything like that.  I jumped on my phone and googled several different key words that might give me a clue.  The first six or so hits talked about "did you recently start an antibiotic?"  I guess that makes sense.  An antibiotic can kill beneficial organisms and cause thrush, but it still didn't feel right.  Bells were going off in my head but I couldn't put it together.  I called a friend of mine whom I just got done playing basketball with.  He was a dentist, maybe he will know.  I did my best to describe it over the phone and he asked if she had recently started an antibiotic.  We agreed that it was strange and that she needs to get it checked out in the morning.  

The residue in Kycie's mouth was thrush.  Thrush is the common name for yeast infections caused by the microorganism Canidia albicans.  Oral thrush can present as white, creamy-looking lesions on the inside of the cheeks and on the tongue.  I do not know why Kycie's looked green, but the infection was all over her gums, back of her throat and tonsils.  The white lesions seen in the back of her throat the day before was also thrush, but assumed to be a strep infection.  With Kycie's high blood glucose, she also had high levels of glucose in her saliva.  The increase in glucose provides abundant food source for Candida.  This, combined with taking the antibiotic, caused an explosion in the microorganism.

About this time Jamie walked by and I quickly showed her the inside of Kycie's mouth.  Jamie then alerted me to another concerning finding.  She took Kycie's shirt off and she was skin and bone.  You could see each rib and the ridges of her spine.  I couldn't believe the amount of weight she had lost.  Kycie hadn't eaten much of anything since Sunday night.  So I would expect her to have lost weight, but she honestly looked anorexic.  As we got Kycie ready for bed I told Jamie, "First thing in the morning you go right to the doctors office.  If you just show up they should see you.  If they won't see you, then go the the ER." 

It had been a long two days away from home, working on the road.  The kids were all ready for bed and so was I.  As usual, Kycie asked if she could sleep by us.  Fearing that she had the flu, we were having Kycie sleep on the floor in our room.   I always go back to that night in my head.  Things I wish I would have done different.  I wish I would have let her sleep between us one more time.  To have just one more night with my little girl.  Kycie woke up twice during the night and threw up.  I was half asleep, but I remember holding her hair as she dry heaved into the toilet.  Then she would cry for more Sprite.  We were out of Sprite, so I filled her cup up with water.  Later she woke up again, threw up, and asked for more water.

Now that I know how incredibly sick Kycie was, I wish I would have just taken her to the ER that night.  It may not have changed things, but I would not have the same guilt.  I gave Kycie everything I had when she was sick.  Jamie and I vowed to never leave her side and to be by her till the end.  But on Thursday night I failed Kycie.  Everyday in the hospital and again when we got her home I told Kycie that I was sorry.  Cheeks wet from tears I would press the side of my face to hers. I'm sorry I could not piece it all together sooner.  I'm sorry you have to go through this.  I'm sorry I wasn't with you in flight and on the ambulance.  I'm sorry I couldn't be with you and your mom at the ER in SLC.  I'm so so sorry Sissy!  I know she didn't blame me. I know she was chosen before she was born. I know where she is and what she is doing. Even with this knowledge, January  29th will always haunt me.  

Other than that Thursday night, there is not a single thing I regret in taking care of Kycie.  Every day forward Jamie and I tried our best to act on the promptings of the Holy Ghost. The windows of heaven opened as we prayed to know what to do.

Doctor's office - (01/28/15)

Post from Jamie on Wednesday January 28th, 2015.  The night after taking the kids to see the doctors.

Blue and gold banquet tonight is spent like this😢. Another one down. Strep throat has hit our house. We still sent his cake that he and josh worked hard on. Thanks @gmomnormafor filling in for us tonight! @jjterry77#praytheother4dontcatchitnow

Daxton (8) sick with sore throat and stomach ache.

Blue and Gold Banquet Cake

We don't take our kids to the doctors office too much.  They don't get sick that often and when they do we can usually handle it on our own.  On Wednesday mornings I get up early and drive 110 miles into Nevada for work.  I work all day Wednesday, stay the night in the office and work Thursday.  I usually get home between 6:00 and 8:00 Thursday night.

With Kycie still not feeling well and now that Daxton is sick Jamie decided Tuesday night she would take the kids in for a check up Wednesday.  I try and remember that Tuesday night.  I remember getting home from work late, Jamie running kids and I was in charge of making a cake for scouts.  I remember Kycie and Daxton sitting on the couch with their water cups.  Neither of them were hungry, only wanting something to drink.

The next day, Wednesday, I was working in Nevada when Jamie called.  She had just got back from the doctor's office and both kids have strep throat.  They were both given an antibiotic and she was told to give it a few days.  I remember Jamie telling me, "it is weird because Kycie has never complained of a sore throat."  Daxton said it hurt when he swallowed, but not Kycie.  Of course, Kycie was only 5 and Daxton 8.  Daxton could express what was bothering him much better than Kycie.  When the doctor looked into Kycie's mouth there were several white patches on her tonsils, so it must be strep throat.

Both Daxton and Kycie came home and found their spot back on the couch.  By the end of the night Daxton was starting to eat a little bit of toast.  Kycie would only drink liquids.  At one point Jamie fixed her a bowl of cereal.  Jamie called me that night and told me that Kycie had only drank the milk.  Jamie was worried that it would upset her stomach but was thankful she was at least getting fluids down.  She was right, Kycie threw up the milk later that night.

It is unknown what Kycie's blood sugar was at this point, but I imagine it was pretty high.  I do not know if Kycie would have been in diabetic ketoacidosis (DKA) at this point.  Maybe, maybe not.  But what is DKA and why is it so dangerous?

DKA is the result of a relative or absolute deficit of insulin.  I'm no expert, but this is how I understand it.  

Whenever you eat, your body will break food down into glucose.  Glucose is a type of sugar that is your body's main source of energy.  Glucose then goes into your bloodstream and your blood glucose (blood sugar) begins to rise.  As your blood glucose begins to rise, your pancreas responds by releasing a hormone called insulin.

Insulin allows glucose to cross out of your bloodstream and into your body's cells.  Think of insulin as a "key" that "unlocks" the cells so glucose can enter.  Once glucose is in your cells, it is used for energy.

By Wednesday, Kycie's pancreas was producing little to no insulin.  Therefore there was no "key" to "unlock" the cells and her blood glucose kept getting higher and higher.  Because her cells were unable to use glucose as energy, her body started breaking down fat and protein to get energy.  This causes ketones to spill into her blood and urine.  Ketones are harmful to the body and are acidic.  That's where the name Diabetic Keto-acidosis comes from.  

Oh how I wish I had known.  I wish I knew the signs to watch for.  

Vomiting.  

Increased thirst.  

Increased urination.  

Rapid breathing.  

Increased appetite, or in Kycie's case decreased appetite.  

Drowsiness or lethargy. 

Loss of weight.

Today is Wednesday, January 28th.  Tomorrow will be Thursday, January 29th.  One day before that dreadful day.  If I could take one day back it would be Thursday.  If I could change one thing, it would have been my decision making on Thursday night.

Entering the Storm

I recently finished The Martian by Andy Weir.  The book takes place in the future and is about an astronaut named Mark Watney who is stranded on Mars.  At one point in the book, Mark enters a deadly dust storm without even knowing it.  The dust is so fine and the storm begins so subtly that the experienced astronaut is completely unaware of the danger he is walking into.  So he keeps walking.  

January 25th, 2015 - The start of another typical week.  Church starts at 9:00 am.  Kycie went to sacrament meeting for an hour and then singing and sharing time for the next two hours.  After church Kycie had her usual after church snack of chips-n-cheese-n-salsa and a drink of milk.  She then cuddled up next me and Jamie on the couch.  She said she had a headache and laid quietly next to us.  After a few minutes she closed her eyes and fell asleep.  Soon there  after, the noise of wrestling boys woke her up.  Not wanting to be left out, Kycie jumped up and headed upstairs.  A little while later she came to the banister crying that the boys were being mean to her.  This was not like Kycie, she constantly was being teased by her older brothers but it never made her cry.  Having 5 boys and 1 girl, Jamie and I had been warned many times about the "drama" little girls bring.  Kycie was never dramatic.  She could entertain herself for hours playing with toys in the front room.  If someone took her toy she simply found another one to play with.  Several days before, Kycie came to me and Jamie crying that Keaton would not let her play with him.  Jamie turned to me and said, "is this the beginning of her girl drama?"  We had no idea that her body was slowly being sapped of energy, causing her to be irritable and emotional.  

Feeding the ducks - January 23rd

Kycie and Boston laying on Jamie after church.  Kycie had just complained of a headache.

January 26th, 2015 - Every day Kycie would look forward to going to preschool.  She would always ask Jamie, "what do I have today?"  Monday morning Kycie woke and told Jamie she didn't feel good enough to go to school.  The first time she had ever missed school due to an illness.  Jamie already had plans, so a babysitter came to watch Kycie and Boston.  When Jamie got home the babysitter told her that Kycie had thrown up a little in her hands.  Looks like Kycie has the flu.  Jamie got her a sippy cup of Sprite and a blanket.  Kycie slept off and on the rest of the day, eating nothing and only drinking her Spite or water.

Post from Jamie January 27th, 2015:  "This sweet girl has done nothing but sleep for two days straight.  She is one sick girlie and it breaks my heart.  The flu bug stinks and I wish it would leave."

Tuesday, January 27th - On Tuesday our 8 year old Daxton didn't go to school.  He was complaining of a stomach ache and sore throat and Kycie still wasn't feeling well.  Jamie called the doctors office and explained what was going on.  They said if the kids are not feeling better by tomorrow to bring them in.  Both kids had completely lost their appetite and would not eat anything.  They would only take sips of water or Sprite.  I really wasn't alarmed by the amount of liquid Kycie was drinking.  I was more concerned that she wan't eating anything.  I didn't notice any other symptoms other than stomachache, loss of appetite and headache.  She never requested something to drink, she either got it on her own or if we noticed the kids cups were empty we would fill them.

It breaks my heart to think of how sick she was and that I didn't realize it.  There wasn't a day that passed in the hospital or after we got Kycie home that I wouldn't hug her and tell her how sorry I was.  I am sorry I missed it.  I'm so sorry that I cannot fix this.  I am sorry that I let you walk right into the storm.  

A few weeks ago I stopped by Kycie's grave.  There was a beanie boo under her sign with dirt and grass clippings all over it.  With tears in my eyes I slowly picked off the blades of grass and spoke out loud as if she was right next to me.  "Your stuffed animal is all dirty.  Let me clean it for you."  I put the small stuffed animal with big eyes back safely into the center of her wreath.  I could feel my boat being tossed violently in the dark storm like it had so many times before over the last 9 months.  Slowly, the waves calm and a still small voice whispers "In the world ye shall have tribulation: but be of good cheer; I have overcome the world" (John 16:33).  President Howard W. Hunter wrote, "But Jesus was not spared grief and pain and anguish and buffeting.  No tongue can speak the unutterable burden he carried, nor have the wisdom to understand the prophet Isaiah's description of him as "a man of sorrows." (Isa. 53.3.)  His ship was tossed most of his life, and, at least to mortal eyes, it crashed fatally on the rocky coast of Calvary.  We are asked not to look on life with mortal eyes; with spiritual vision we know something quite different was happening upon the cross."

To mortal eyes, it appears like our boat is starting to sink.

Ponder the path of thy feet - January 24th, 2015

Post From Jamie:  We had a fun time at house of jump with all these crazy kids yesterday!! Thankful for good friends and thankful we didn't loose one while we had so many;)

This picture was taken on Saturday, January 24th.  Just 6 days before that tragic day.  This was a fun day.  Kycie and her brothers each invited a friend to go.  Of course Kycie chose her buddy Jett.  They were born exactly one month apart.  Jamie and Jett's mom (Reagan) were born and raised in the same town, grew up together and have remained close friends from childhood.  This day Kycie jumped, ran, laughed and smiled.  

Reagan told me that a few days before we went to House of Jump, Kycie was at her house.  Their house is only 3 blocks away from our house.  Reagan asked Kycie if she could give her a ride home.  Kycie thought about it for a minute then said, "no, I think I will just walk."  She watched as Kycie walked down the sidewalk alone that day in January.  Kicking rocks, jumping over cracks in the cement and talking to herself.

I often wonder about that walk.  What was going through that little mind of hers?  What was she talking to herself about?  Kycie slowly followed the path back to her home.  It was the calm before the storm; time to herself and to be alone.  Or was she?  

In life, we learn that decisions determine destiny.  However, Kycie is only 5 years old.  The decisions she had made in her earthly life has had little to no determination of her destiny.  What decisions did Kycie make in her pre-mortal life?  Those choices must have played a vital role in her destiny because as a 5 year old child, she is not yet accountable for her choices.  When we came to earth, we brought with us one of the greatest gifts of God, our agency.  The privilege to choose for ourselves.  

There have been those times in my life, where if I look back with careful thought, I can see the divine hand of God smoothing out my path.  The quiet whisper of the Spirit into ears not ready to listen.  I am astonished when looking back to the previous year of my life and how well God prepared me for this trial, I just didn't realize it.  I will go more into that another day.  

Proverbs 4:26: "Ponder the path of thy feet."  I cannot help but think that on that day Kycie walked home alone, looking down at her painted toenails, that she was pondering the path of her feet.  About to walk a similar path that Jesus walked.  She was not alone, but a legion of angels from a life before walked by her side.  Ready to hold and sustain her in the hour before darkness.  She was more aware of what was to come than any of us will ever know.  Disappointment and pain, she was about to walk the path of bitter sorrow.  Remaining faithful and true unto all things, Kycie has now found great happiness and is reunited with those who walked home with her that day.  

I pray each night that I can have Kycie's courage.  To follow the path that Jesus walked, remain obedient and true and lay treasures up in heaven.  I know my little girl has the promise of eternal life.  I cannot wait to she her there again one day.

First Cheer Competition - January 10th

Post From Jamie:  First cheer competition for Kycie today!! She did so awesome and had the biggest smile on her face the whole time!! I loved it and so did she!! They took first place and did so good!! Sure love this baby girl!! @jjterry77

Competition in Las Vegas.  Jamie and Kycie drove down with Aunt Kaili.  Kycie kept talking about going swimming.  She couldn't wait to swim at the hotel pool with the other girls in her squad.  Jamie and Kycie got to Vegas late and all the other girls had already gone swimming.  Nothing stopping Kycie, she went swimming alone.  The next day was full of cheering and fun.  Never once did she show signs of fatigue, hunger, thirst or anything that seemed out of the ordinary.

Looking back, there were a few times at home that Kycie seemed "more emotional" in the week before she got sick.  I remember one particular time.  All the kids were upstairs and Kycie came to tattle on Keaton and Daxton.  They were being mean and Kycie was crying.  This was a bit unusual as Kycie could take teasing better than any of our kids.  She rarely cried, especially for something like this.  I even made the comment to Jamie, "Maybe this is the start of her emotions."  

Having all boys, many people warned us about the drama that follows a little girl.  We never experienced this.  Kycie was always so well mannered.  She could sit for hours and play toys by herself.  She didn't need anyone to entertain her.  She was good at sharing and the boys relentless teasing never bothered her.  In fact, I think she was quietly learning from her brothers because she knew every button she could push to agitate her boys.

Christmas Day

Post From Jamie:  Kycie finally has a sister!!! Meet "Bell". The newest member of our family!!

As usual at the Terry house, Santa's sleigh crashed in our living room.  Kycie loved her new cache of Beanie Boos.  She was also excited to get her very own make-up kit.  She spent the morning putting on make up, just like mom.  When she was done marking up her face, gave her cousins a make over and then her 90+ year old great grandma.  She was covered in make up when she was told there was a surprise at the door.

The boys made it to the door first.  Kycie wasn't far behind.  In the video 'Kycie 5 years old' you can see the look on her face.  Classic Kycie.  Excited beyond belief, but contained to a simple smile and crinkled nose.  The little puppy had a collar with bells on it.  When we asked Kycie what she wanted to name it, she said, "Bell." 

It's beginning to look a lot like Christmas!!!

Post From Josh:  It's Christmas Eve!!! Merry Christmas from Josh, Jamie @jandjterry , Bryton (12) @bryton_t13 , Treyton (11) @treyton_terry , Daxton (8), Keaton (7), Kycie (5), and Boston (18 mos).

Jamie is neurotic about family pictures.  Pictures have to be done in time to make a Christmas card and have them in the mail before Christmas.  Our clothes and outfits are only purchased after Jamie decides what Kycie will wear.  It has always been this way, buy Kycie's outfit first, and match everyone else accordingly. 

These pictures were taken by the banks of the Virgin River in November, shortly after Kycie's birthday.  St. George is very dry, but near the river it got humid and Kycie's curls started to go flat.  Never shy of the camera, Kycie always got most photogenic.

By this time Jamie was working hard on Kycie's Christmas present.  Calling all over the state, trying to find that perfect dog.