Kisses For Kycie

#kissesforkycie #t1d

Goodbye Kycie; Part 1

Joshua Terry4 Comments

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 2006

Family Journal Page from 2005

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

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.

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