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Friday, December 7, 2018

God, Do You Have One More Miracle?

On Sunday 11th, I woke up from a dream. I was with Canyon, Chandler and my mom merrily walking up a shallow creek in some canyon in Sedona. It was beautiful, calm, enchanting when the water started getting deeper. There was an area up ahead deep enough where people were jumping in. Suddenly I noticed Canyon was gone. I knew he had fallen underwater, so I took a deep breath and went too find him. Under water was murky and I couldn’t see anything, but I started feeling around and I immediately felt my son.
It was at this moment in my dream I had a conscious thought which was, I’m so thankful this dream isn’t a nightmare. I’ve had many dreams where my kids are drowning and despite my efforts, I cannot reach them.
So, thankfully, in my dream I pulled Canyon up and upon noticing he wasn’t breathing, patted his back with just enough force to push whatever water he’d swallowed out of his mouth.
Canyon then lifted his head and smiled at me. When I awoke, his smiling face was the last thing I remember seeing. I again consciously thought, I’m so thankful that wasn’t a frightening dream. I knew it could have been, but it wasn’t because everything had worked out so nicely.
Check on Canyon.

Putting Canyon to bed the night before. 

Because of the dream, because of Canyon’s beautiful smile at the end, something bigger was telling me to check on my son.
I didn’t want to. First of all, he sleeps with his 8 year-old sister Eden so if anything was wrong, she would come and get me. It was Sunday morning, early, and I didn’t want to wake either one of them. But mostly because I am the mother of a six-week old baby who keeps me up during the night and I was beyond tired. Getting up to check on my peaceful, sleeping 3 year-old was not a priority of mine, but still. . . something nudged at me so with the little energy I had I knew I was getting up.  I quickly told my husband about the dream and then, grudgingly got out of my warm cozy bed to check on Canyon.
The blinds on my bedroom windows were closed, so although the sun was shining my room was dark. The hallway was dark. Eden’s room would have been dark too, but she’d slept with her desk lamp on. I’m so thankful there was light in her room because without it, I wouldn’t have seen Canyon clearly.
He was flat on his back, stiff, pale, wide open eyes stuck, blank stare, catatonic, a slight shaking of his head, again, again – was he even breathing.
Instantly, he was in my arms and I was yelling out to my husband, “Canyon’s having a seizure!” I was out the door to the car and Derek was right behind me. It was a race against time. Every tick, tick tick of his head, his sweaty cheek – no, it was drool, his rigid body against mine, my reassuring words doing nothing, absolutely nothing, “It’s alright Canyon, Mommy’s right here!” But, it wasn’t alright.
I hadn’t feed the newborn baby for hours. She was asleep in her crib, but anytime she would wake up and need a bottle. Eden had awoken frantically when I grabbed for Canyon. She was now crying by the front door. The older kids knew what was going on and they were rubbing their eyes, trying to wake up to reality. This was Canyon’s 4th seizure in 2 ½ years, not like this was common, not like this was even normal, but now, I knew it was. Something was wrong. The doctors would no longer be able to blame it on a fever, or just a one time thing. Canyon did not have a fever now. Before going to bed the night before, he had not a single symptom anything was wrong, but now, I knew our little boy was sick.
Canyon’s first seizure, around 8 months old, had been the result of a spike in fever. I was giving him a bath because he was sick with a cold and I was trying to bring down his temperature. I had given him Tylenol, but he was still hot. While in the bath, he quivered, like he’d had a chill. I pulled him out of the bath and wrapped him in a towel. I had laid him on the bed and noticed he wasn’t trying to wiggle away from me. It was a game he had played as a baby when I changed his diaper he would wiggle and giggle until I tickled him back, but Canyon just stared. My son Chandler was with me and I asked, “What’s wrong with Canyon? Do you notice he’s acting weird? Why isn’t he looking at us?” I picked Canyon up and he went limp. He started convulsing and I screamed for Derek to call 911. I held Canyon near, but within a minute I noticed he was turning blue. By the time the paramedics rushed into the house, I was giving Canyon CPR on the kitchen floor. One of the paramedics grabbed him and we were off to the hospital.

Canyon's first seizure at 8 months.

During that first seizure, I’ll never forget the emergency room doctor’s reaction. Once Canyon’s vitals were stable, he joked with the nurse, “How many of these do we get a week?” I’m sitting there trembling because I feel like my son could have died and the doctor was super casual like this happens all the time. This was called a febrile seizure. So, when Canyon had his second seizure about 1½ years later, even though it was awful and frightening, I felt confident everything would be ok. 
But the last two seizures had not been caused by fever. Canyon’s symptoms were totally different then the first two. He didn’t convulse, he didn’t foam at the mouth, and he didn’t turn blue. It was like he just checked out, or as the neurologist had said, ‘It’s like his brain is shutting down.” Other then the slight twitch of his head, he didn’t have typical seizure symptoms. The neurologist wasn’t even sure if it was a seizure, although he continued to call it that. Even worse, once Canyon’s seizures started, whether febrile or other, he couldn’t pull himself out of it. Once he started a seizure, if we didn’t find him I wasn’t sure if he would make it out alive.
So, this fourth seizure, I didn’t know what to expect. Would the doctor laugh about it later, like “Oh, just another day at the office?” But this was not the case. This was horrible. Once in the hospital, the doctors took over. Canyon’s clothing was cut off, tubes put down his throat, IV’s in both arms, and questions – how long had he been like this? What was his medical condition? Could I step aside while they did an x-ray? A cat scan? Had he had any sort of trauma? Head injury?

They were moving Canyon from the ER to the pediatric ICU. The nurse pushed the gurney down the hall. For a mother who always has something do to, always has a child in her arms, always has a task at hand, I had nothing. Derek and I followed and I felt totally empty. I was wearing the same shirt I’d fallen asleep in. My hair was a mess, I hadn’t washed my face, I was full of milk and needed to feed my baby. We walked and there was this great unknown, the mystery of our son’s health, a waiting game, listening to the oxygen machine assist Canyon breathing and as we walked into the elevator my eyes filled with tears. Where was my perfect little boy? Who was that child on that hospital bed hooked up to all that equipment? Would my son come out of this normal? I felt like I was living in someone else’s life. Where was my perfect world with my perfectly healthy children? I’d been given so much. Canyon had already survived three seizures. He had been given miracle after miracle after miracle. I’d been here before, asking God, begging. Could I ask again? God, do you have one more miracle for Canyon?
Please, I begged. Please.

Derek and I waited by Canyon’s side until they wheeled him out for his second MRI in four months. He would have another EEG. Both came back abnormal. What was causing the seizures? All his other lab work came back perfect, except there were more tests and we would have to wait for the results. These tests were looking for diseases. Genetic disorders and conditions I’d never heard of. He might not recover.
Dear God, please heal our little boy. I can’t live without him.
It’s at this moment I realized, Why me? Why should I have this miracle when so many live with this reality? A sick children, the loss of a child, an unknown illness, a horrible diagnosis? Why not me? Why not Canyon? It was like a lottery nobody wanted to win. Was our time up? We had seven children, all healthy, all perfect. Was this our fate? Did our family need this to learn how to be more patient, more loving? What had I done wrong? What did I need to learn?

The hours and days were long, but after three days Canyon came home. 

This is where I slept, or at least tried to sleep.

He had recovered, but I know he’s still sick. Epilepsy? They’re not sure. He could be completely fine, although the mind plays horrible games. Typical daily occurrences like Canyon having a fall at the park. Is he alright? Did his body fail him? Does he talk the same? Does he look the same? Is he walking different? Derek and I have watched videos of him from before the seizure. Is he the same?
They are not sure how long he’d been it in that seizure, why he had it, what is the cause of this abnormal dangerous condition, if it was even a seizure at all, if he has epilepsy or something else, what is going on with his brain, specifically his white matter, will it happen again, when? Daily medication has been prescribed and after a brain MRI, EEG, blood work and therapy we came home and have done our best to pretend like everything is all right.

We pray all the time. There’s something shocking about listening to your three-year old pray “Dear Jesus, please help me not have a seizure.” I slip Canyon’s medication into his morning drink of raspberry tea.
I look back at that dream and I know God is with us. I know God spoke to me. He had Canyon come to me and say “Mommy, I can’t breathe. Come fine me.” Without the dream, I know I wouldn’t have woken up. I wouldn’t have checked on Canyon that Sunday morning. He may have gone hours longer and it’s very likely we wouldn’t have him here with us today. I remember the dream being peaceful. Even when Canyon was underwater, even when he wasn’t breathing I never panicked. I never felt out of control. I wonder if this is meant to be so I can apply those same feelings to what we’re going through. It takes great faith to be calm and peaceful about this, but I’m trying. Every time I put him to bed at night, I wonder Will he be alright in the morning? When I'm up with the baby at night, I check on Canyon. I'm on edge? Does he look alright? I might jolt him awake just to make sure. I hold onto him and cry. I tell him I love him all the time (I did that before anyway).

We have so many praying for us, so many wonderful meals, hugs and meaningful conversations. My Relief Society President, a dear friend of mine took Ruby and cared for her day and night. As a family, we have pulled closer together. We will keep you posted on updates. Canyon is doing great. Currently, we are waiting to meet with the neurologist on December 13th. Thank you for your continued love and prayers.