Tuesday, January 30, 2018

Kayson Strong as an Eagle Day 9

Sunday 1-28-18
When we arrived at the hospital this am, they said he was already opening his eyes some.  We were told not to expect that till at least tues.  He was moving ever so slightly too, his fingers.  He had a slight fever and his heart rate and blood pressure were high.  He was starting to cough on his own and trying to breath over the vent some.  He did throw up some but they thinks thats the agitation of waking up.  Sounds like thats somewhat normal.  They are running cultures of everything to see where the fever is coming from.  Its all so scary to me.  None of the med experts seem overly concerned or even really surprised but for this Mama it is slightly terrifying.  He did look in his daddy's direction once when the doc said, "you're daddys here, look at your daddy".  They were glad to see his left side moving bc that was the weakening side before they started the coma.  He was coughing too and would get agitated if he woke any.  He was even crying some, just silent tears running out of his eyes.  It's so hard to watch.  That's my baby laying there, my sweet, precious, so silly baby!  He adds so much to our fam!

Kayson Strong as an Eagle Day 8

Saturday 1-27-18
It was so great to wake up to three of our babies with us.  We met up with daddy and the other two babies and went to IHOP for breakfast.  The food was good but we will not return to that IHOP, Glenn didn't get part of his meal and they tried to charge him for it and they weren't that nice and the place was so cramped.  it was very disappointing.  So when we arrived at the hospital, Glenn still needed breakfast so he went to the cafeteria and I took the babies to the gift shop, their treat for this visit, you get to pick one thing in the gift shop for yourself.  Glenn and I had walked through the shop before they got here and didn't see anything too $$$ so we didn't set a limit.  Well, leave it to Keegan to notice something in the case just down the hall that's sold in the gift shop.  A dinosaur kit that you build $150!!!  WHAT?!> lol  So I called his daddy and we decided no, we said IN the store and technically that wasn't!  He was disappointed at first but then he found this other buildable dino that was under was $20, much better and it was his fav dino anyways so it all worked out.  Then Glenn came and found us and we all went up to the playroom.  That place is amazing.  Daddy stayed with the younger three while Glenn and I and the teens went up to visit Kayson.  The teens put his ER stickers on his scrapbook to decorate it and talked to him.  Then we went back to the playroom and Glenn took daddy and Keegan and Cayden up.  The hospital had given a new small box of legos that they got to build some things for Kayson.  They built him a plane with a sheep on it, a car and a house and they are sitting on his table for when he's ready for them.  His Aunt Bebe and Uncle Brian also came to see him.  She walked 11 flights of stairs to see him bc she can't do elevators!  Then we took the kids to Kohls bc the boys needed shoes.  They were excited to pick new tennis shoes.  Cayden's light up and he put them on as soon as we left the store.  Keegan also requested new flip flops.  My babies are so special, they wanted to get Kayson something in the gift shop and they wanted him to get shoes too (paw patrol!).  I love their hearts so much!  While we were in the shoes and I thought we were alone, Kalani started dancing so I was dancing too, encouraging her to dance more, so cute and then I realize we have an audience!  lol, this lady thought it was so cute and then we talked and she works at a hospital and found Kaysons page on fb and liked it while we were talking.  It was sweet.  Then back to the hospital for lunch and more visits with Kayson.  Then it was time for the babies and daddy to head home.  We were sad and exhausted.  It was a good day but it was sooooo tiring, reaffirming that they are where they need to be during the week.  Kayson was weaned off his coma med (they turned it off) during the day but still sleeping bc it is a slow process and the med stays in the system for awhile.  This day was about the other babies.  Kirsten cried when they left.  We went to our room and crashed.

Sunday, January 28, 2018

Kayson Strong as an Eagle Days 3-7

Monday 1-22-18 thru Friday 1-26-18
Wow these days are such a blur.  Watching your little one just sleep but not even breathing on his own is just crazy hard.  There were MRIs and long days and lots of questions.  We missed our other babies so much.  We did get into the Ronald McDonald House and that place is amazing!  Everyone there and at the hospital is so nice and caring.  One day we found a Kohls bc my shoes starting making sores on my feet.  It was hard to act normal though.  We had many visitors and they all helped pass the time.  We got taken out to dinner.  That was nice and tasted so good.  We have been so blessed by everyones generosity and overwhelmed with love.  We are so grateful for everyones support!  One day we went down to the chapel and the devotion was based on Is 40:31 "they that wait upon the Lord shall renew their strength; They shall mount up with wings as eagles; they shall run and not be weary, they shall walk and not faint."  We started receiving cards at the hospital and RMH.  I'm sitting here typing this blog today and really these days are just a really huge blur and I'm so tired, I may try to lay down after I finish typing this one bc I think my brain is tired.  He got to be covered with the blanket I made him for Christmas for the week, He has a braveheart lion care bear and a hulk by his side helping him stay strong and brave.  We've cried.  We were also so excited when are others got to us friday night!  They almost knocked me down hugging me.  We love our babies so much.  We are never all separated like this.  It is hard on all of us.  I am so thankful for everyone who is loving on my others while we can't be there.  Sorry this post is so scattered.

Thursday, January 25, 2018

Kayson Strong as an Eagle Day 2

Sunday 1-21-18
After arriving at Children's Medical Center we were checked into the ER.  So much of it feels like a big blur still.  It got a bit scary in the ER, he started breathing irregular but his O2 sats were still high.  They moved us up to an ICU room about 330 am.  Kayson was kinda in and out of it.  He would cry out and then rest a bit and cry again.  His breathing would act like he was holding his breath some but his oxygen stayed high.  When he breathed deeper, he would cry in pain.  We cried too.  He wanted to go home but he hurt so bad.  They had to check his eyes and reflexes every hour.  He was still able to talk but some of what he said didn't make sense, we weren't sure what he was talking about.  They noticed his left side getting weaker.  Then they started prepping him for MRI.  I don't even know what time things happened, everything was such a blur.  There were so many questions to answer and consents to be signed and people everywhere!  Doctors and nurses and they were everywhere.  They got him sedated, they got a drain in his brain, they had all kinds of monitors hooked up and then they took him down.  Then we waited and waited and waited and waited.  People came, I don't remember who exactly or when.  Then we were called down to MRI to sign consents for another tests and told it looked like he had a stroke.  More waiting.  When he finally made it back to his room and we were called back to speak with the docs, there were no less than 15 people in his room, setting things up, hooking him to this and that and the doc teams waiting for us.  Andy and Margaret had come back up to the hospital and came back with us.  It was at this point that we were told that our baby boy our precious, sweet, so silly baby boy did not have a tumor but had had a stroke, which is very rare in children.  Then they went on to say that his was even rarer bc it was caused by a blood clot, caused by a tear in his artery, caused by his spine and they don't know why this happens bc it shouldn't happen.  Children are supposed to be resilient, the doc even said children should even be able to fall out of trees and be fine.  There was no way to know it would happen, no way to stop it, nothing we could have done.  They had met with a team of docs and discussed in detail their options.  They were putting him in a medical coma for five days.  To try to prevent further swelling and further damage, protect the brain stem.  So many tears, so many questions, so much fear!  His neurologist was called in from home and hurried up here in his sweats, he told us NOT to stay at hospital overnight, he will be sleeping and out and we needed to go and get some rest and "sleep in the same bed"  I didn't know doctors said such things.  lol  We had a small army of people here with us and they held us while we cried.  A lady from church even made all the phone calls to alert our family and friends bc I couldn't deal.  I almost lost my legs when they said if we had waited to bring him in, he wouldn't have made it.  They said he actually stopped breathing twice early that am before the MRI.  Now my little boy is just laying there.  and we wait.  Another couple paid for us a room close to the hospital.  It was good to get some sleep, still many tears and much fear, it was so hard to leave but I hadn't slept at all and Glenn only a few hours like 2.

Tuesday, January 23, 2018

Kayson Strong as an Eagle Day 1

Saturday 1-20-18
After my precious baby boy had spent all day fri with a headache and throwing up I was concerned about dehydration bc he was still throwing up, moaning about his head and he is so small already, he has no weight to lose.  So Glenn called the after hours line and they said take him to urgent care.  After waiting an hour they called us back and when we tried to get his weight he couldn't stand up on the scale and told us he was dizzy.  They said we aren't gong to see him, he needs a cat scan, go directly to the ER.  The ER did the cat scan, started some fluids, gave him some headache meds and we waited.  Then everything kinda blew up.  Some of it still seems somewhat like a blur, like i am still in this fog of unreal, like maybe its really just a nightmare and I'm going to wake up and we will all be home and well and normal.  sigh. The nurse practitioner comes in and sits down and tells us that Kayson, our Kayson, our baby, this light in our family, has a mass on his brain and they will be flying him to Dallas as soon as they can!  What?!?  What?!?  God?  Are you there?  (He is!) NO!!!!! Why?  this isn't supposed to happen.  This CAN'T be happening!  NO!  She walks out, we are in TEARS!  What do we do now, what next?  again, why? NO! Phone calls, visitors, lots of visitors, I don't know what happened to the ER rules but at one point there was like three or four in the room with us and MORE in the waiting room!  We had a whole army of Jesus family show up by our side.  I don't know what we would've done without them!  One couple said we are here with our van, we are driving you into Dallas.  Glenn got to go on the plane with Kayson.  Margaret drove me in while her husband Andy went all the way out to our house, picked up some needs and drove the Jeep in to us so we would have it.  We arrived at the Children Medical Center ER close to midnight.

Glass Bottle part 7

Forgiveness. In order to truly move on, I knew I needed to forgive: forgive the cult for so cruelly hurting my family and, forgive my grandparents for what felt like abandonment, and I needed to forgive God. He has a plan for my life that will include the pain of these hard times.
Through my life experiences I learned about the fragility of trust. Freshman year of high school I wrote down this thought, "Trust is like a glass bottle. Once formed it is a beautiful creation, but once shattered, can never be reformed completely." I think about this thought constantly, it reminds me that trust is earned, not given freely. In order for people to trust me, I must prove myself worthy of their trust; although this works both ways. People must prove to me that I can truly trust them. I learned through the years, at my wonderful church, how to start trusting in people better. My family (church and biological) helps me in many ways to continue to rebuild my faith and trust in our fellow humans. God and I are now working on piecing my trust in Him back together.

The end.

Glass Bottle part 6

But there's hope. Let me elaborate on that.
Acceptance. Love. Forgiveness...
Acceptance. I learned to move on I need to accept what happened to me and not dwell on the past. Things happen to all sorts of people: good, bad, mediocre, it doesn't matter. We are all people, and not one of us are the same. I also learned that I need to allow people in and just be me. I need to trust that I am acceptable, enough and can be loved for who I am.
Love. 3 years ago we were invited to come visit this church, Longview Christian Church. When we first arrived there, a tad bit late, this lady, who we later came to know as Mrs. Diana, showed us around, and we could instantly feel the love from the whole congregation. This love that we so longed for, that we didn't even believe was real, started piecing us back together. The love paved the way towards trust, healing, and forgiveness.

Friday, January 19, 2018

Glass Bottle part 5

Stress. The stress of worrying for my mom and taking care of my brothers weighed down on me daily. As the years went on, even though mom was getting out of bed after a few months and our family life was stabilizing, we still did not have a church. Meanwhile my dad started the process of switching careers. Without a place to safely learn about God and how to handle my pain, I became increasingly distrustful of everyone. I couldn't open up easily to anyone, I guarded myself so strongly it seemed like no one could break through. I became afraid of people, and in some ways, I still am. My trust in God deteriorated greatly. I couldn't understand why this happened, why would "Christians" do this to us? How could this ever play a part in my future? What good could come from this pain? In my early teen years I witnessed my other grandparents go through a divorce, and my aunt leave her abusive, now ex-, husband who just happened to be a cult leader. It felt like I could never get a moment's peace. One thing right after another, continuing on and on, like a cycle circling around me bringing more and more pain whenever it could. I felt like when things finally started looking up, the world decided to strike us down again.

Monday, January 15, 2018

Glass Bottle part 4

Confusion. Why would my grandparents choose the cult over my family? Were we not good enough? I wrestled with this daily. Why did Mama not get out of bed till noon? What was wrong with my mother? Why was she like this? Because when you're ten you don't understand the severity of depression and how it can affect daily life. Day after day these questions kept bouncing around in my head, round and round they went. In the morning waiting to see if Mama was going to get up that day, I would take care of my brothers: Chris-9, Cayden-5, Keegan-3 and Kayson-1. I would make sure they ate, and kept quiet so Mama could rest. We usually would end up in front of the t.v. watching whatever good came on PBS Kids. After all, what else was  I supposed to do? I am the oldest; It's my job to take care of my younger siblings. One question, though: did I do a good enough job?

Saturday, January 13, 2018

Glass Bottle part 3

Fear. I now no longer had a church, a place that I considered my second home. Gone in just a matter of seconds. What would we do now? Where would we go to grow in Christ? Where could my mama get the help she needed to cope? Would I ever trust again?
Anger. Enter at your own risk. I was so angry, at the cult, at my grandparents, and even at God. Why did this happen to my family? I had this bubbling, boiling lava inside of me bursting to get out. Why did this happen to me? I'm only 10!!! Why did this happen to my family? We never did anything wrong. This rage in me demanding to be let loose in a fire of anguish and pain.

Wednesday, January 10, 2018

Glass Bottle Part 2

Sadness. That day I lost a piece of my childhood because I was forced to learn an adult lesson: not all those in authority can be trusted.
Hurt. I was then forced to watch as Mrs. Scarlett's actions, culminating in a 2 hour all-the-things-I-hate-about-you meeting directed towards my mom with the cult leader watching and agreeing, destroyed my mom's light. After which my grandparents, whom we shall call Mrs. White and Colonel Mustard, sided with the cult. They blamed my mom for what was happening and basically cut of all ties with us. It felt like they abandoned my brothers and me. Which means no more Christmas, no more birthdays, no more visits at their house, no more meaningful contact. They stopped coming to everything we invited them to. They seemed to just disappear from my life completely.

Monday, January 8, 2018

Glass Bottle Part 1

By Kirsten Derr for her AP English III class
An essay about a formative time of her life

Shock. Sadness. Hurt. Fear. Anger. Confusion. Stress...
Let me explain.
It started 6 years ago, the summer I would turn 11. We attended this church, which shall be henceforth known as the cult, where my parents were 3rd generation with pastors included in the family. My mom became friends with this lady, whom I shall call Mrs. Scarlett. At first everything seemed fine, and then it happened. Mrs. Scarlett began making small jabs at my mom in various settings on facebook. Maybe here I should mention that Mrs. Scarlett helped in what they called our youth class. And then, one Friday evening, Mrs. Scarlett decided cyber bullying wasn't enough for her. This is where my story begins.
Shock. My mom called me from Ladies Bible Study asking me what exactly I said in class the wednesday before. I was shocked to be told that Mrs. Scarlett had twisted words of mine to hurt my mama in front of all the cult ladies. This lady I trusted, this adult placed in a position of authority, warped what I said in a place of security and innocence.

Friday, January 5, 2018

birthday poem from Kirsten

I don't have your present
So this will have to do
While waiting for the day
It is due

I love you dear Mother
So shining and bright
You will never be a bother
All of my life

I love you dear mother
For each day I learn more
From your wisdom and grace
And for this
You shall never be a bore

I love you dear mother
So patient and kind
My mistakes have been many
But you love me still

Now it's my time to say
How much you mean to me
I've loved you Mama
Since the day I was born

Happy Birthday