Kisses For Kycie

#kissesforkycie #t1d

Goodbye Kycie Part 2

Joshua Terry6 Comments

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.

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 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.