131 Seizures Later

The Hardest Day of My Life

July 15 2019.36 weeks pregnant and I’m sitting in a tiny hospital room with my toddler and husband trying to swallow what the neurologist had just told us. He was holding up the results from Payson's genetic panel, pointing out the gene mutation they'd found. SCN1A gene. Dravet syndrome. Not inherited-- a new mutation that happened spontaneously in Payson. A rare, catastrophic, and devastating type of epilepsy. Payson has Dravet Syndrome.

This was the worst case scenario.

My head was spinning trying to understand. "So what about his kids?" I asked pointing to my otherwise perfectly healthy, chubby toddler sitting on the floor preoccupied with trying to take his shoes off. "Will his kids have Dravet Syndrome as well?"

The moment it came out of my mouth-- I knew. The neurologist paused, fixing me with a look of half pity, half surprise. His eyes said everything-- "Oh dear. She doesn't understand yet... He's not ever going to have any kids."

"Yes," he finally said, choosing to over-enunciate the next two words "in theory, his kids would have a 50% chance of inheriting the gene. But..." He looked at Payson-- and deciding not to completely devastate me-- simply said with a thin smile, "That's a long way away."

David and I walked out of the hospital and just like that, a new chapter of our lives began. To be honest, it felt like a nightmare. I couldn't stop crying that whole day. I spent the day googling "dravet syndrome", crying, hurting, feeling angry at everything-- God, myself, the circumstance-- at the cruelty of his disease realizing that I might spend the rest of my life watching my perfect, sweet little boy suffer seizures after seizure and slowly developmentally decline. I felt so afraid. I felt like my child's future had suddenly been ripped away and the life I'd envisioned for him had been nothing but an illusion.

This is Dravet Syndrome. A rare type of epilepsy that never sleeps. It strikes relentlessly, ravishes the brain and body, and never ends. It's drug resistant. Easily triggered by small things like excitement, temperature change, illness. A bath that is too warm, a hot summer day, standing by an open window when a breeze hits, running and playing with friends. All things a child should be able to enjoy. And yet-- these "normal" delights of childhood send my baby convulsing on the floor.

It's something that pinches your heart when you see other moms with healthy babies-- wanting that effortless health so badly for yours. It's knowing that you will most likely be your child's constant caregiver for life. It's a completely life changing diagnosis.

I Was Angry

Payson's seizures started at 3 months old. His first seizure (read about it here) lasted 30 minutes. The ER docs shrugged their shoulders after running every imaginable test and told us it was "atypical", but there was only a 50% chance of him having a seizure again, and there wasn't a reason to go "full court press" just yet. Two months later he had a second seizure lasting 15 minutes. And then just days after Thanksgiving he had three seizures in a 24 hour period-- each lasting about 10 minutes. We were hospitalized in the pediatric unit. Every test was again run. Nothing. His results came back normal every time. Doctors scratched their heads and sent us home with anti-seizure medications that ultimately failed to stop his seizures.

I've riden in the back of an ambulance with my baby more times than I care to remember. We've spent hours in the ER-- even on Christmas Eve. We've spent chunks of our lives admitted in a pediatric unit hospital ward. And each new test only left us more and more confused when they repeatedly came back normal.

And the doctors prescribe, prescribe, prescribe.

And yet-- the seizures didn't stop. They got worse. About a week after his first birthday, he started having seizures about every other day-- sometimes multiple seizures in a day. Most of his seizures were between 8 and 15 minutes long with an occasional 30 minute seizure (lately his seizures are between one and two hours long and I would do anything to have those "short" 8-30 minute seizures back). He's failed three anti-seizure medications. We've seen multiple neurologists. Pediatricians. Naturopathic doctors. Chiropractors. And finally-- one genetic panel later and our neurologist found it-- a single gene mutation dooming him to a life of endless drug-resistant seizures and a horrifying spectrum of side effects ranging from developmental delays, wheelchairs, feeding tubes, full-blown mental retardation, to a 10-20% chance of death before age 10.

I’ve started writing this post I don’t know how many times. The title of this post has crept from “ten seizures later”, to “25 seizures later”,"56 seizures later", to finally "131 seizures later". It's hard for me to explain where I'm at with all of this without explaining where I've been....

...I’ve been angry.

Depressed. Inconsolably sad and sick over it.

I’ve felt lost.

Hopeless. Scared. Bitter. Exhausted.

Struggled through the stages of grief. Oh there was so much grief.

I can't begin to explain how hard it is to have a child with a chronic illness. There is a grieving period. There is a death of the life you thought you were going to have with this child. There are intense emotions. And this--I felt all this BEFORE he was diagnosed with Dravet. Back when we thought it was *just* epilepsy. Oh how tame epilepsy sounds now compared to Dravet!

I thought of everything— everything I ate, everything I did during my pregnancy-- such bitter irony. We limited ultrasound exposure, we used a feta scope instead of a Doppler, I gagged down my prenatal vitamins everyday, ate healthy, exercised, had a midwife-attended natural birth at a birth center for a host of reasons but certainly to protect my baby from the risks of medical interventions. I prayed every. single. day of my pregnancy for a healthy baby... And it didn't matter. God didn't listen.

I stripped it down to base biology. I thought maybe if David and I had just waited to have a baby even one, two, six more months— heck even years like most normal people do— maybe it wouldn’t have happened. A different egg, a different sperm. That's all it would have taken to avoid this. It felt like we were being punished. And I wrestled with the concept of divine design. How could there be divine design when it was a spontaneous, freak mutation?

I went to a bad place. I was angry. I felt overwhelmed. No one could understand what I was going through, so I withdrew. I was genuinely grieving. I became jealous of all the new mommas around me and their perfect, healthy babies. Finally, after painful months of pointing the finger at myself, wrestling with my faith, and questioning divine design, I realized that if I let it, Payson's seizures could cast a pretty big shadow over my experience as a mother.

The Turning Point

And then, in the middle of what we thought was *just* epilepsy, I hit the turning point. Walking through open Texas fields this spring pushing Payson in his stroller-- headphones in and music on shuffle-- I had an unexpected moment of illumination. The words to a song I used to listen to a lot after my mission hit my heart and suddenly they had a deeper meaning-- they were an answer to the things I had been pleading with God to understand. The lyrics were:

“Troubles chasing me again, breaking down my last defense, I’m looking, God I’m looking for you.Weary just won’t let me rest and fear is filling up my head, I’m longing, God I’m longing for you. But I will find you in the place I am, find you when I’m at my end... When I am weak, when I am lost and searching... I find you on my knees.” (Find Yo u on My Knees, Kari Jobe)

This song STILL gives me chills. Every time. Give it a listen.

I couldn't stop the tears from spilling from my eyes as the scales of darkness fell away and I felt the the presence of the spirit comfort me and remind me of a prompting I'd had eight months ago to strengthen my faith in prayer about a month before Payson had his first seizure.

I remembered how many times his seizures had brought me to my knees pleading for Heavenly Father to intervene because I was completely helpless. I remembered all the nights David and I (and our families) knelt in prayer asking the Lord to make his seizures stop. I remembered how many times the Lord had reached down to where I was-- terrified and trembling on my knees as my baby seized-- to comfort me and bring me peace when it didn't make sense to feel anything but fear. I had been blessed to have felt literally held by God through every seizure. I have never felt closer to God in my life than I have through this trial.

As I walked and marveled and pondered all these things, another line from a song filled my mind:

“I’m talking Daniel in the den of lions, I’m talking Jonah in the belly of the whale. I'm talking three Hebrew children and they’re standing in the furnace— the fiery furnace— but the fire didn’t burn them, and the lions didn’t bite, and the lord reached down and you can be sure that everything turned out right. 

You’ll meet the lord in the furnace... You’ll meet him on your time of trial.. You’ll meet him in your hour of prayer.” (Where You Are, Kenneth Cope)

The presence of the spirit was wrapped around me tightly as I reflected on how blessed I’d been to literally "meet the lord” through prayer in my trial— my furnace, my den of lions— or as Nephi would call it, my wilderness.

My Wilderness

I hate to admit this because it sounds so basic, but my favorite book in the Book of Mormon is Nephi. I love the feeling in Nephi's writing. I love the dance of faith, a formidable wilderness, and fierce family dynamics.

Through their journey, Nephi and his family receive this promise from the Lord: "And I will also be your light in the wilderness; and I will prepare the way before you, if it so be that ye shall keep my commandments... and ye shall know that it is by me that ye are led." (1 Nephi 17:13)

I cling to this promise. And I can testify that God has been there through our personal wilderness. He has been our light when everything else felt dark. I get emotional when I think about how blessed I have been to see the hand of the Lord and His miracles literally every day through Payson's seizures.

The biggest blessings throughout this experience have been the times I get to hear the comfort and will of the Lord through priesthood blessings. I’ve been directly told that Payson is not a lemon. That God divinely designed him to experience life this way, and Payson chose to come to earth like this, and that I can trust God's plan for him.

I would have never chosen to grow this way-- the way that God wants me to grow through this trial-- but honestly, I'm in love with this trial now. I love the person I am becoming through this experience. It's hard and soul-stretching, but it's also amazingly joyful and the most fulfilling thing I've ever done. I love the relationship I have with my God and with my son. There is so much joy in our house!

I'm at peace with knowing that God always intended Payson to be like this. He knew what Payson's life would be like-- and I was the one who had it wrong from the beginning.

Payson doesn’t remember his seizures. He’s not really "there" when he has a seizure. This is his normal. So it's my normal too. I was made for this as much as he was. I am his mother-- his divinely appointed caregiver. I love him fiercely. I do not recoil or shrink from the magnitude of what we face. I see past the terror of the seizure because of Jesus Christ.

There for a lot of plans I had that had to change. There are a lot of things I've had to give up in the last year. It’s shown me what the most important things are. It’s making me less selfish. More resilient. It's teaching me how to accept days when I don’t get anything done but lay in bed with a recovering baby because I am literally the only person there for him who loves him like this. Mothers bear the suffering or their children far more than their children do. I've cried with him and for him-- we are in this together.

We trust God. We believe in the power of Jesus Christ-- his ability to rescue, restore, resurrect, and redeem. We move forward in faith.

There are the darkest and most bitter of days every now and then-- pages I've completely filled with possible complications from seizures, journal entries I wrote crippled with fear and filled with an achy hollow in the pit of my stomach not knowing what Payson's future will be.

And during those hard days, I remember something my dad said that I didn’t expect and that I’ll never forgot. He said “I don’t know why it happens, and it sounds crazy, but one day you will find a reason to be grateful for it.”

And That's where I am.

Grateful.

Where I am

I refuse to find gratitude for this experience years from now. I want to find it now. And if I really believe in divine design (which I do) and that God does all things for our good, then I really ought to praise him even when Payson is having a seizure. For whatever reason it is God‘s plan, and we work to stop it, but ultimately if it is good with God, than it is good with me.

And slowly, these negative feelings I had are leaving. I found my faith-- my light in the wilderness-- and by the end of the first day after his diagnosis I wrote five words in my journal:

THIS IS NOT A TRAGEDY.

And I made a decision. I am never going to cry about his again because I'm afraid of it, angry about it, or sad about it. This is not a tragedy; I feel LUCKY to be so tutored and held by God through this. This is what I came to earth for.

When it's all over, I want to say of my experience in my wilderness what Nephi says of his journey in the wilderness:

"...And we did travel and wade through much affliction in the wilderness; and our women did bear children in the wilderness. And so great were the blessings of the Lord upon us...that our women... were strong, yea, even like unto the men; and they began to bear their journeyings without murmurings. And thus we see that the commandments of God must be fulfilled. And if it so be that the children of men keep the commandments of God he doth nourish them, and strengthen them, and provide means whereby they can accomplish the thing which he has commanded them; wherefore, he did provide means for us while we did sojourn in the wilderness."

I can tell you from day after day of seizures with Payson that this is true.

I am grateful for Dravet Syndrome and for my little boy who battles it every single day.

Today is still a day of miracles, and I am so lucky to be a witness of it.