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Tuesday, March 5, 2019

The Moment We’ve Been Waiting For, Almost

Yesterday there was a message on my phone from an unknown number. I listened to it and my eyes filled with tears. Derek was home (so grateful for that) and he walked into our bedroom. “You’ve got to listen to this,” I said.

The message was from our neurologist’s office. His nurse Maria (who has become such a dear friend) had left a message regarding Canyon’s lab results. These tests have come in two phases that have taken over 3 long heart-wrenching months to obtain. When Canyon was in the hospital in November 2018 after a life-threatening seizure, the doctor collected blood for a lysosomal enzyme panel. The test is sent out of state to Thomas Jefferson University. It tests for approximately 30 of some of the most horrible, terminal childhood illnesses one can imagine. I never knew such demons of health even existed. There wasn’t a single disease on that panel I’d ever even heard of and it was suspected our son Canyon had one of them. I was to have the results in 1-2 weeks. Fear, doubt, worry, anxiety became friends of mine and Derek’s. We waited through Thanksgiving and finally, I called the hospital. “Why hasn’t anyone called us about the lab results?” I asked. No one knew. No one knew who to direct me too. Maria from the neurologist’s office was the only one who seemed to care enough to do the leg work to figure out where the results were. You can imagine my shock when over a month of waiting, Maria informed us that test was lost on the same day it was taken. It was never sent out.

In December 2018 we had an appointment with our neurologist. My mom came with me and I’m so thankful she did because my tears ran warm and plentiful down my cheeks. At many points throughout the visit, I couldn’t gain my composure. My new baby Ruby slept in my arms the entire time. It was at this appointment we were told Canyon had many symptoms for an illness called adrenoleukodystropy. Again, I’d never even heard of such a disease, but it was brutal – truly a parent’s worse nightmare. 

Because of our son’s bizarre seizures, his MRI, blood work and other physical symptoms, it was suspected he was in the early stages. This cruelest disease, most common in boys, affects the child around the age of 4. Canyon is 3½ . The child will develop perfectly, when suddenly the parents notice a lazy eye (Canyon already had that), a slight limp, (one neurologist in the hospital suspected this) a slur in speech, (yes) perhaps a seizure (4 seizures) and they will take him to a doctor. The parents have no idea of course that their child will quickly decline because the myelin sheath around his brain’s white matter (basically the fatty acids) is dissolving, or dying. Their beautiful, vivacious, talented, expressive child, the same child that just moments ago had their whole life ahead of them, that child’s brain is dying. The entire process can take 2-5 years.  The parents will get to watch their child lose vision, lose hearing, stop walking, stop eating and worse, but he will still be the child they love and adore. He will still be a child they would be willing to die for, and most likely, they will be beg God, “Please take me, but not my child.”

The test for leukodystropy was done by taking a saliva sample. I was horrified that Canyon didn’t just have to beat the odds for one type of leukodystropy, but 300. Yes, he would be tested for 300 types of leukodystropy. There were days Derek and I felt like we were being crushed. Everything Canyon did was scrutinized. In August 2018 he’d had surgery for strabismus to correct his wandering eyes, but we began to notice his eyes were straying again. His speech? Was it worse? Why couldn’t I understand him sometimes? Running at the park, he falls. Why? What’s happening to him? I would watch him play for hours and just cry a river. Was he dying right before my eyes? How long did we have? He’s so precious. Why would God take him? It was the cruelest trick. I would stare at Canyon sleeping and feel the weight of the world on my shoulders. I would never stop staring at him. They could never take him out of my arms. I would die holding him. Derek and I held each other up, practically taking turns, “Ok, today is your day to fall apart and I’ll be the one to keep it together, but tomorrow I’ll be the one to lose it.”

All this happened over Christmas. With all the celebrations, the parties, the festivities, Derek and I were hollow, but I found comfort in Christmas music. I’ve never listened so closely to these hymns and carols. They seemed to speak to me. Redemption, Peace, The Savior of the World, Hope, Eternal Life, Joy - these words penetrated my heart, filtering out through more tears. My eyes were puffy. I cried at any moment. I would hold my new baby while I held Canyon and my arms were so full. I asked God to help me be strong. After my c-section, I had to be careful about lifting Canyon, but when he fell asleep in my arms and the house was quiet, and the soft lights of the Christmas tree glowed on his face, what could I do? I had to lift him. Each step was cautiously taken and to bend placing him into bed I had to be strategic, but I was blessed with the strength.  Please, don’t for a moment think I had to do this alone. Derek and I have been carried by hundreds, thousands of prayers, hugs, notes, meals and more.

It was at one moment in the cold nights of December when I realized I couldn’t live like this anymore. Despair is a horrible way to live. It was one night I awoke to Derek crying. The room was pitch black. The baby was sleeping in her crib, most likely to cry at any moment. I wasn’t quite awake yet, but I knew my reality. I knew Canyon was sick. Before I even opened my eyes, I joined Derek in that cry, and by the time I was fully awake, I realized we were both sobbing. Broken hearts, tired bodies, worn-out minds, trembling souls, we held each other in the dark. It was at this moment something inside of me said “You have a choice. Do you want to live like this?” I realized Derek and I were useless to Canyon, our other kids and each other if we let despair run our lives. We had to find peace.

That next morning, somehow, I was able to rise a bit above the fear. It took some mental concentration, lots of prayer, uplifting music, the love and support of friends and family, but if I focused on my blessings and expressed gratitude, I could hold myself together.  With intentional thought and practice, Derek and I started lifting each other out of it. Canyon was thriving. His coordination and speech were not just normal for his age, but we always felt Canyon was gifted. He expressed complex ideas, memorized songs and played like a normal three year-old. Was he going to be alright? Some days were better then others, but we held it together a bit more. This gift of gratitude eventually became a part of daily life and after 9 long weeks, we got the results about Canyon. Out of 300 tests, one gene tested positive for a type of leukodystropy, but he needed two genes (one from each parent) to have the full disease. They couldn’t get a full read on the other gene. They would need to run another test, as a matter of fact, they’d had it drawn in November, but that was the lysosomal enzyme panel lost in the hospital. It had come back to haunt us.

Canyon had another neurology appointment. The doctor concluded he most likely did not have a type of leukodystropy (we would have to wait for the other panel to know for certain), but there were too many things pointing to something degenerative. The doctor explained in great detail why he thought this was what was happening. Perhaps Canyon had something that would allow him to live a bit longer, but it still didn’t look good. The evidence suggested Canyon’s condition would continue to decline, but not as fast as leukodystropy. How long? What disease? The doctor didn’t know. The lysosomal enzyme panel tested for 30 more diseases. It was like winning (or losing) the lottery. Either way, something devastating is harming Canyon. I came home and told Derek what the doctor said. That evening during family scripture study, we heard this moaning sound and realized one of our other children was just bawling. It hit us all in different ways. We all rallied to his support. We let each one of our children ask questions and express their feelings. Canyon prayed that night and when he did it felt like he was literally communicating with God.

Three weeks ago, I took Canyon back into the hospital for the lysosomal enzyme panel. We were billed $3850.00. It felt like a kick in the gut. This would be a big financial hit for our family, but our doctor was working with the hospital. They lost the original test results. What had they done to redeem the situation? It didn’t seem fair. Canyon and I prayed before they took his blood and he did amazing. We were told it would take two weeks for the results. 

This takes me back to yesterday, Derek and I listening to the message from our dear nurse Maria. “The lysosomal enzyme panel came back normal. The doctor feels Canyon has a greater chance of not having something progressive. Things are looking much better for your son.”

We celebrated by doing something we are very good at, we cried. More tears, more hugs, more unconditional love, more prayers, more time with Canyon to let everything process. Could it be our little boy is going to be alright? He’s been on seizure medication since November and has been seizure-free since. But what about the other symptoms? Are they manageable with medication? We will have to wait and see, but for now, we will take this most important victory.

I have been very careful about sharing specifics on social media because our son Chandler is serving a mission in the Phillipines and if there was a chance he could find out about it, our family did not want him to carry any of this burden.

Tuesday, February 5, 2019

Would She Find Joy?

What do you do when life gets tough?

I’ve wondered about that lately. Because honestly, I love being happy. It’s my thing. I love being excited about every new day. I love family and nature and life. I love Jesus and children and babies. And chocolate chip cookie dough! Oh and I love my husband. He’s my best friend and I’m always lifted up around him. I think he’s super cute and thank heavens, the feeling is mutual. My kids are my world. I mean, what’s not to be happy about with all this goodness going on.

So, what if someone who’s usually really happy like me, one day, just doesn’t feel like being happy anymore. How does she get it back?

Why did it go away?

Let’s just pretend for a minute and since I’m a writer, let’s bring in some worst case scenario stuff, just for fun and of course I’m just being super random, not wanting to be too specific here because I don’t really know anybody going through this, but let’s just say what if there was this woman who was a mother and, I don’t know, she had a baby and it was a super tough pregnancy. Not just because she was older, but because life was overwhelming. She stays positive, for the most part, but out of necessity gives up on all her personal dreams, like teaching, working for a variety of non-profits and she feels her dream of becoming a New York Times best-selling author slipping away because her family needs her, so she starts to fall into automatic mode. Life becomes one giant pile of dirty dishes and dirty clothes, but she listens to Christian music, so there are still days she smiles and dances with the kids in the living room. She gets super big and fat when one day she’s told she’ll have to have a c-section because, the baby might die if the doctor doesn’t get her out that day, so, this mother, faces one of her biggest fears EVER and has this c-section. Yes, the baby lives and the little thing is perfect, but to make it a bit more dramatic, let’s say this random mother contracts staph twice and even still when she sits up, there’s a pain that makes her wonder if she’ll every feel normal again. To add insult to injury, the mother is still big and fat, even with the baby out.

And maybe this mother, who loves her kids like nothing else in this world, gives someone she loves, like maybe her oldest child to a cause so special, like a mission that helps the poor and those searching for hope, for Christ. 

This kid, again, let’s just say to make this scenario more dramatic, he’s her oldest son and he’s amazing. He’s been such a support in her life. He’s pure sunshine with the biggest smile (actually she’s nicknamed it the “million dollar smile”). This kid of hers can practically read her mind and even though he’s just a teenager one of his life’s purposes is to love his mom and to make her smile every day. 

Not just because he tells her he loves her every time he walks out the door, in the door and calls, but he is so helpful, running errands, babysitting, doing the dishes every night and he is the reason the mom can get so much done for the other kids. He’s the reason she’s sane. He’s the reason the mom even has time during the day to take a walk or think or take a shower. There's never been enough time in the day for her to truly tell him how much she loves him.

Let’s say this oldest son leaves one day and goes halfway across the world to volunteer to love others as Christ does, but the mother can’t talk to him, except in letters and she knows she won’t see him for years. The siblings of this oldest child are a wreck too because of course he meant just as much to them as the mother. 

So, her kids are crying themselves to sleep, missing him like crazy, writing him notes and art work as therapy to learn how to live without him. This mother has to dig deep because it would be a really good time to feel sorry for herself, or to worry sick about her son because he’s in a third world country you know, eating fish off the floor and using a mosquito net just so he can sleep through the night without being bit to death. 

And remember, this mother just had a baby too. And she’s still fat, but now she’s also very tired.

I’m really digging here, but imagine if, I don’t know, if this mother’s other child, because she has a lot of them (remember, she loves babies), let’s say it’s her three year old little boy who is like her beating heart, is having life-threatening seizures. He might be facing a terminal illness and every night when she goes to bed (if the newborn is not awake of course) she isn’t sure when she wakes up in the morning if that child will still be alive. Because she’s seen him almost die three times. For dramatic effect, add a couple of lengthy hospital stays in the pediatric ICU. Let’s take this story up a notch and say another one of her children has ADD that presents itself in pretty big ways every day, another one of her children is getting bullied at school and the mother, realizes pep talks and prayers aren’t working anymore for the situation. Super crazy, but this mother hates conflict like the plague, but let’s make her get out of her comfort zone and confront this bullying situation (now remember, I’m just pulling this stuff out of thin air), and maybe on just any given day her husband tells her the funding to his work may be getting redistributed somewhere else and he’s not sure how he’s going to get paid (now that’s a good one to conjure up).  What else can I imagine? O.K., pretend this mother who loves food decides to give up sugar, and while she’s going through some pretty tough %$#*, she decides she’s done being fat. 

Because being fat is starting to manifest in a way that shows how dysfunctional things are. She’s having achy joints, insomnia, foggy brain and low energy. And she asks herself, “When are you going to start making yourself a priority?” That would be tough, huh. I’d feel bad for someone going through that. I mean give that girl some cookies!

She sits at the park, day after day and watches her little three year old play and she wonders “How can we live without him?” 

Sometimes, her mind wanders and she imagines the worst case scenario, nothing I could think up on my own, but she can. Running through her mind are images of sick kids she’s seen on the internet. Against the doctor’s orders, she has researched the heck out of this illness that is haunting her son like a ghost. She knows it all, how it starts, how it grows and how eventually it kills. She stares at his MRI for hours and compares it to those she finds on the internet. When she kisses the top of his head, she imagines the love she feels for him can travel through his skull into the white matter of his brain and heal it. She'll even hold him in her arms and press that kiss so tenderly into his head at that very spot where his MRI shows his white matter is abnormal and she pleads  with God that love will and can heal. Her heart does this weird thing where it pauses long enough to skip a beat and she feels like she might suffocate. So, she takes a deep breath and pretends he’s not sick at all.She knows there are people in the world going through way more bigger challenges then this and she tries to keep things in perspective. 

She has a roof over her head, a loving family, food (well not sugar), clothing, love and she tells herself “You’re just going to have to hang on, think positive and leave it up to God.” Then, she stops and the cold wind blows through her hair, “God, are your there?” She knows He is because when life has been tough before, He always made himself known. He’s just never put her through anything this serious before.

Crazy how my mind gets working when I’m writing, but now I’m imagining this “mother” finds out there’s a tree root stuck in the plumbing underneath her house. It’s a pretty old house, but this mother loves big trees and vintage homes, so here she finds herself with a plumber literally jack-hammering up the floor in her hallway. I’d imagine the sound of a jack-hammer is a horrible way to wake up in the morning. Of course, the project gets dragged out (is there really a plumber who finishes a job when he says he will) and she’s carrying the newborn, or maybe it’s the sick three year old (I’ll have to work on the specifics of that scene later) and she’s tripping over the crumbled cement in the hallway. She stops and feels that broken floor kind of represents her life. Has she crumbled too? I mean, she did spend two hours that night doing the dishes in her bath tub, while the newborn baby was crying and the three year old who has seizures was offering to “help” (we all know how helpful it is when a three year old wants to help). 

And she can’t even eat some chocolate that night to help her get through it all. Remember, she’s still fat.

As a writer, I’ve learned a lot about character development and how to create conflict, so I would create something with the husband, who has always been her rock, maybe he could start to crumble too. He has anxiety because he’s worried about the three year old. The amazing thing about this kid is everyone feels like his best friend.

The husband has too many sleepless nights and starts to have his own break downs. They manifest through intense crying anytime, well, especially before bed so he can’t sleep very well, which only escalates this situation of anxiety. His normal joyful self is now this long-faced puffy-eyed man every time he walks through the door. He literally starts scheduling time at work where he can cry and pray. His wife worries about him more and more because she’s never seen him like this.

So, how would that woman, that mother, that daughter of God who really just wants to be her best self and rise every day to the challenges presented to her, how would she find joy in all this muck?

If I were to experience something like this, I would be thankful I’d spent years of my life focused on the teachings of Jesus Christ because through Him, all things are possible. JOY! That would be my focus. ABUNDANCE! CLARITY! PURPOSE! MIRACLES! LOVE!

(artist is Liz Lemon Swindle)

Because random people like family, friends, neighbors, church members are sooooo good. They make meals, offer to go grocery shopping, stop in for visits, bring gifts, offer to help give your kid a ride to school EVERY DAY (yes, stuff like this really happens). They take your other kids to the park, bring fresh citrus, music, bath balms, baby clothes, they even stop in to see if they can take your laundry to their house so you don’t have to wash it in the tub! The kindness of people manifests through loving texts, fresh flowers that last for weeks, love notes, a clean kitchen, giving the three year old a hair cut because he needed it so bad, prays, fasting, hugs, messages, guacamole and more.

JOY! Can she find it? If I were in this situation, could I?
The night before his last seizure.

The next morning (heartbreak)!

I think I would have to, because if I didn’t I would die without hope. I would be stuck in the worst feeling of despair I’d ever experienced. Forget the plumbing, the job, the sleepless nights, I mean I’d really have to learn what was important. Life, Love, Children, Health, Family, Jesus, God.

Strangely, going without sugar would probably be the best thing for this mother. She would start to have more clarity and her health would slowly return. Giving up this addiction is good for her. And daily intermittent fasting, since the last time her son was in the pediatric ICU, that would help. A vision board. Writing down goals. Positive affirmations. Serving others. Forgetting about self. Starting a business? Selling shampoo? 

What!?! Crazy, but it would give her a new focus and she would understand it’s good for her to do things that help her develop herself, because she’s forgotten so much. She's been drowning in sorrow. Yes, these are the things. And more. Great music, sometimes listening to the same song over and over again, dancing, playing, sunsets, hugs, researching sugar-free recipes,  it’s all there to help if she’ll just let it in.

And of course God would work his magic. He’d give her dreams and impressions. She’d pick up on the subtle messages in songs, words would just pop out to her, she’d feel things so deep and wonder why? 

Her children would respond with such tenderness, she’d actually start to see some hidden blessings in all this muck. Then, God would tell her why. She’d cry and realize she was on a path towards Him, that everything going on pushed her in the right direction.

Admist all this, does she find joy? To her surprise, she does. She had to. But it’s not like birthday party joy, or “you’ve won a new car” joy. It’s like a quiet pondering, where love grows in abundance and even simple signs of beauty create a big response from this mother. She hears her three year old sing a song and she closes her eyes to block everything out. All she wants to do is to hear him sing. He runs into her arms and she holds the entire world. He picks her a flower and he’s given her his heart over and over again. 

Her newborn baby giggles and smiles like her life depends on it. 

Every smile is like a sign everything is going to be alright. 

Her husband becomes more tender, more sympathetic, more caring (which she didn’t think was possible) then every before. 

Her children are like beautiful lights walking in and out of the door – to school, to play with a friend, to church – and the mother knows she is blessed beyond measure. This is the joy the mother finds. It's a joy that presents itself in every moment, but she has to look for it and when she finds it, it’s a joy like non else.

Wednesday, January 16, 2019

If Something Is Too Big, Start Small

For two decades, I’ve loved yoga. When I was a new mom with just a couple of kids, I was still in great shape. I loved running, jumped on the trampoline with my kids, swimming, and taking them on bike rides, I mean I was very active so when I did my daily yoga routine, I was flexible and my muscles were warm. This was before a million different videos were on youtube. I had a yoga VHS tape that I turned on and even my kids enjoy the stretches (or jumping on me depending on their mood). So easy was that yoga routine I started slipping. It got a little boring and my body was so flexible, it didn’t seem important anymore. Every once in a while I’d do it, but eventually, I got out of the routine.

I remember a few years ago, right after I had Canyon. I was 75 pounds overweight and had just started practicing intermittent fasting. (You can order my book on intermittent fasting and prayer here.) My body ached, I had pain in places I’d never had and I was so inflexible it was frightening. I couldn’t even do some of the most basic stretched I remembered without experiencing pain. My belly fat was in the way and so was my negative attitude. Would I ever feel good in my body again? Intermittent fasting helped me lose 35 pounds in 5 months. 
I was happy and felt I had some sort of control again over my cravings and daily attitude. I was walking every day, but still didn’t have the good feeling of flexibility I craved. So, with so much of my belly fat gone and my attitude in a much better place, I did a google search. I wanted to start doing yoga again. Let me tell you, there are a lot of people doing some very intense yoga routines. I found a Jillian Michael's routine that I felt was a good start. It was like an intense yoga fat-burning cardio 30-minutes session. The first day I did it, I hated it. The second day I did it, I hated it. Jillian just kept yelling at me. I kept going, every time wishing I didn’t have to. Finally, I stopped. It was just too intense. I didn’t have those good feelings, I couldn’t hold poses because the class was so fast, I was still had bad muscle tone. The music was upbeat, pumping and pounding, but in the past I’d used yoga to help me relax. Yoga no longer felt good to me, so, I stopped. I concluded yoga was no longer for me.

Until about a year later, as my body was still craving something more, I had the idea to do a google search on beginning yoga. I felt inspired that I needed to start from scratch. Why not look for a yoga style that fit into my current physical condition. In addition, with all I had going on, a 30 minute yoga routine seemed to long. Most often, I would be interrupted and that left me frustrated. So, I narrowed my search to 10-minute beginning yoga. That felt good to me. I found a video I liked and started. I enjoyed it so much. (Link to that video is here.) There was no pressure, I could relax and meditate and really be in the moment with gratitude with my body. I continued looking for better yoga experience, but kept it within the framework of 10 minutes and beginning. I came across a video of an Indian man talking about yoga. He was frustrated that modern culture has taken yoga and used it as a weight-loss tool. Although that was a huge benefit, yoga first and foremost was for mediation and to connect with the body. It was to feel one with God and your inner being. That felt so right to me. I know longer felt like yoga owed me a weight-loss experience, but I could used it to strengthen my body, meditate and feel gratitude. With this new perspective, my yoga routine became about feeling and listening to my body.

Before anybody knew I was pregnant with Ruby, I took a trip to see my sister Anna in San Diego

She’s a certified yoga instructor and I watched her daily, even twice daily include yoga. Her practice is beautiful. She connects and is always looking for was to improve herself. She did “yoga on the go.” 
She had her mat in her car or carried it when we walked to the beach. 

She intentionally practiced yoga in some unusual places. 

It was the first time it occurred to me I could do yoga out of the house or out of the gym. 

I could do yoga at a park or in the back yard while my kids played. I could take a walk and stop and do a 10-minute yoga routine along the way. I found a beautiful church that had a grass yard. There was a patch of shade underneath a large tree. For my first 20 weeks of pregnancy with Ruby, I would take that walk, stop at the church and with gratitude, do some simple stretches. It was so relaxing. I had the wind and sun, birds and butterflies with me. My little baby was growing inside me and it was such a special time. Because of what Anna taught me, I would walk to the park and while Canyon played, I would roll out my yoga mat and do a simple routine in the grass. Yoga helped with reduced swelling and I gained much less weight during my pregnancy then before.

After I had my c-section with Ruby, I took six weeks to recover. I googled Yoga after a c-section.  You wouldn’t believe the videos and trainers who have posted to help those of us trying to strengthen and ourselves after a c-section. The sessions were very gentle and paid close attention to not undo any healing that had already occurred in the abdomen. There were classes for 4-6 weeks out from c-section and 6-8 weeks. I slowly (some days very slowly) experienced the healing and medication these sessions offered.

What have I learned? That I shouldn’t be afraid to start small because doing things daily on a small level is better than not doing it at all. I no longer feel the pressure to do yoga hard and fast. Doing small daily has allowed me to try some big and see how I feel. Honestly, I don’t like doing challenging yoga. It’s just not for me. I also allow myself flexibility in slow, simple movements and I’ve learned to breath. I never understood the whole breathing thing in yoga until I really slowed it down. I breath my way into deeper and deeper stretches and love it. I have a lot to think about and I breath that stress out with each stretch. Some days I’m in a yoga practice for an hour, while other days I only go for ten minutes. I’ve created my own routines with little bits of favorites from what I’ve learned through the years. I’ve added a little bit of strength training and kettle bell lifts. No pressure, no yelling, no out-of-reach goals, no pressure from the scale, just beautiful, feel-good stretching yoga and I love it.

You can follow Anna and her amazing yoga practice on Instagram at awakenmintyoga or on facebook at Anna Adele. She's awesome.

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.