Isaiah’s story

July 14, 2023

Despite my best efforts to post on Twitter, Facebook, and Threads, this is a story too big for social media. So, we’ll try this substack thing all the kids are using these days. (If you’ve followed our story on CaringBridge, this won’t be new to you. I just wanted a simple place to share a consolidated version of his story.)

This is my son, Isaiah. This photo was taken when he was around 11 years old. He turned 16 years old today (July 14, 2023). My wife, Careese, and I can’t describe how dearly we love him. He is our hero. This is his story.

Isaiah progressed normally until age 10. Completely out of the blue, he collapsed one night into his first grand mal seizure. A litany of tests during and after a brief hospital stay revealed no cause.

Fast forward 2 years. Having had minimal further issues, we began to think seizure issues were behind us. My wife and I were on a weekend getaway trip with one of our daughters for her 13^th birthday when we got the call that upended our life. Isaiah (who was staying with his grandparents) began seizing at around 3am on May 4, 2019, and the seizures would not stop.

We jumped on the first flight we could and broke several traffic laws getting to the hospital. By the time we made it to Isaiah’s ICU room, he had been seizing almost constantly for 7 hours. Despite being heavily sedated and on a ventilator, doctors remained unable to bring him out of status epilepticus.

Within an hour of our arrival, Isaiah was being prepped to be flown to Cook Children’s Hospital in Fort Worth.

As soon as we arrived at Cook Children’s, a hoard of medical professionals began the process of trying every medication and therapy imaginable to save our son’s life.

Unfortunately, every attempt to bring Isaiah out of his medically-induced coma was met with more seizure activity.

During the first week of our stay at Cook Children’s, we unwillingly became part of a club. It’s a horrible club. It’s the club of parents who’ve sat on the edge of a hospital bed and endured the “I’m so sorry. There’s nothing more we can do,” conversation with a doctor or team of doctors. Only those who’ve endured the conversation can truly understand the trauma and deep sadness of that moment.

Miraculously, God blessed us with more time on earth with our boy. Unexpectedly, on May 21, Isaiah emerged from his coma, made eye contact, and smiled at us. It was the first sign of life we had seen in almost 3 weeks.

Isaiah was alive and still “in there.” Hope was alive. He made slight progress before unrelenting seizures forced our boy back into an induced coma. Our hope was renewed, though.

After another couple weeks, Isaiah emerged a second time from an induced coma and began to make slow progress (especially given his eventual diagnosis, which I’ll get into soon). Seizure activity still came regularly; but the seizures were more controlled.

Our boy truly defied all odds and expectations as he faced the task of having to relearn basically everything. First, he began to swallow again. Then, to smile again. (Oh how that boy’s smiles turned the darkest day around.)

Then, he learned to use his eyes to communicate (albeit with a 30 second - 1 minute delay). Then, to move his fingers again. Then, to hold his head up.

Then, to whisper.

Then, to push himself through hours of physical, occupational, and speech therapy to re-learn how to sit up, communicate, and to use a wheelchair. His attitude remained absolutely remarkable throughout. He did not complain. He did not gripe. He tackled each new task with a smile on his face...which brought a very teary smile to his Momma and Daddy's faces at each little victory.

Eventually, Isaiah took his first steps with a walker.

Then, he worked hard to walk without a walker..

Then, on August 1, 2019, Isaiah mustered all of his strength to take the happiest steps our family had taken in months, steps that took him out the doors of Cook Children's Hospital.

All told in 2019, he spent 41 days in ICU and 89 days total in the hospital. Our wonderful warrior of a son endured the unimaginable during those 89 days. In addition to countless blood draws, IVs, tests, EKGs, x-rays, and constant EEG monitoring, he endured three spinal taps, two CT scans, four brain MRIs, two full-body MRIs, three days of hypothermia, two high-dose steroid treatments, three feeding tubes, a blood transfusion, four failed attempts at burst suppression, five rounds of plasmapheresis, and 37 days on a ventilator.

The diagnosis…

Though he underwent every test imaginable, it wasn’t until the last few weeks of our time at Cook Children’s in 2019 that we finally received a diagnosis. His case was very much a mystery until that time. A full genome sequencing revealed a mutation in his DNM1L gene that ultimately triggers super-refractory status epilepticus. This diagnosis is terminal and non-treatable. It is very, very rare; and, there is no known cure. We've read all the case studies we could get our hands on regarding this genetic mutation (as far as we know, there are only 13 other known cases). None of the cases were as fortunate as we were. Isaiah shouldn't be alive, but God was gracious to us.

Our days never looked the same after 2019, but “grateful” doesn’t begin to describe how we felt about every single second of every single one of them. When we left the hospital, Isaiah was on a special diet, on a number of meds, using either a walker or a wheelchair, and could no longer be left unattended. Progress over the next two years was slow but noticeable. While he had leg braces, he stopped using the walker and wheelchair almost entirely. He made progress in school and speech, and was able to return to his beloved school for a few hours one day per week—where he was watched over by the greatest teachers we could have ever asked for.

Though our “new normal” brought significant challenges (including an average of 3-5 seizures per week), it also brought us unspeakable joy, thankfulness, and a deeper appreciation for the God who walked with us through the fire. We did our best to fulfill every desire we could pry out of Isaiah’s wonderfully shy little heart. In short, we lived. And, we cherished every moment we could.

Then, at the end of November 2021, what started out as regular facial twitching escalated into unrelenting seizures for hours on end. We didn’t know it at the time, but initial tests at the hospital revealed that he had caught a pretty bad case of RSV—which apparently triggered his condition.

During this stay in the hospital, we faced a similar battle to the one we faced in 2019. Every attempt to decrease medication or to increase his various physical, occupational, or speech therapies was met with a return of seizure activity.

I need to describe “seizure activity”, because that varies from person to person. Some of Isaiah’s seizures are short and less severe (only affecting his face). These typically last anywhere from 5 to 30 seconds. He had hundreds of these in the hospital and thousands more since. Some of his seizures are more severe grand mal seizures and affect his whole body. These usually last anywhere from 30 seconds to several minutes. He had hundreds of these seizures in the hospital and thousands (yes, thousands) since. At one point during our hospital stay, Isaiah had three hours of smaller seizures that progressed into six hours of big seizures…a total of nearly nine hours straight with 5 to 30 second breaks in between. There isn’t really a way to describe the devastation of the previous sentence. Careese and I held our son’s hand the entire time. In hindsight, I think he was holding our hands as we cried through it all.

During this stay in the hospital (November 22, 2021 until March 7, 2022), Isaiah was put under general anesthesia twice to bring him out of status epilepticus, intubated and extubated three times, had a vagus nerve stimulator surgically implanted, had a tracheostomy and G-button placed, and was prescribed a litany of medications to keep him stable. By the time we exited the hospital on March 7, seizures had robbed him of the ability to move (though we did see very sporadic intentional movement of arms and legs…just not much). For almost a year following our hospital stay, Isaiah was able to track with his eyes and smile at us…which he did at just the right times.

March 7, 2023 marked one year since we left Cook Children’s Hospital. Surreal. On March 7, 2022, Careese and I carried Isaiah into our home and frantically connected all of his medical equipment.

I spent the entire first week home losing my ever-loving mind. We had worked hard in the hospital to learn as much as we could, but there really wasn’t a way to be prepared for our “new normal.” Isaiah had to be rotated every 2 hours around the clock to prevent bed sores and repositioned after every cough or seizure to prevent other injuries. His muscles had to be stretched regularly to prevent stiffness and cramps. His feeds had to be mixed and given 4 times per day. His litany of meds had to be administered at the right times. His airway had to be kept clear via a suction machine and regular trach changes. His trach and g-button sites had to be kept as clean and sterile as possible. He had to remain connected to a pulse/oxygen monitor at all times as he wasn’t able to communicate if he was in pain or having trouble breathing. On top of this, everything had to be done as delicately as possible to keep seizures to a minimum. We were battling 20-40 seizures per day, and keeping Isaiah’s airway clear was a constant challenge. The suction machine was running more than it wasn’t. Careese or I one basically sat by Isaiah’s bed 24/7.

We both had our moments, but I freaked out…a lot. There were just so many emergency situations. Isaiah’s trach would clog, and he would turn blue. A combination of suctioning, changing his trach, and giving him oxygen had to be done very, very quickly in order for him to survive. There were no doctors or nurses there for backup. I can’t tell you the number of times I unproductively and frantically paced the room as if my feet were on fire while Careese sprang into superhero mode, calmly and methodically saving Isaiah’s life. Thank God for Careese. It is not an exaggeration to say that she has singlehandedly saved his life dozens of times this past year. I found this gif that pretty much summed up our 2 different reactions to emergencies:

Unfortunately, Isaiah’s condition has remained largely unchanged since we left the hospital. Each and every day continues to be a herculean battle to maintain stability. Don’t get me wrong, we have seen periodic progress many times only to have the progress ripped away by illness of some sort…most recently a UTI and covid.

As it stands today, our son has lost the ability to move, communicate, or smile. We keep his eyes covered during the vast majority of his waking hours in order to keep seizures at bay. (Lately, seizures begin almost immediately if we uncover his eyes.) As you would imagine, that makes everything around here even more emotionally challenging than it has been.

As I mentioned, Isaiah recently finished battling another UTI and has been sleeping as much as 20 hours per day. Fortunately, his UTI symptoms were less severe than his last UTI battle, and his sleeping hours continue to have far less seizure activity than his waking hours. His sleep seems largely peaceful. We are so very thankful for that.

I could sugar-coat it, but I won’t. Pretty much every single day has been beyond our worst nightmare. We have very nearly lost our son more times than we can count. Watching our then 10-year-old endure a single, solitary seizure all those years ago nearly broke us. Watching our now 16-year-old continue to endure yet another day of seizures in addition to the thousands he’s had since seizure #1 has left us beyond broken. Watching our whole family grieve is beyond heartbreaking. Yet, God continues to carry our whole family through this mess—via a variety of means—every single day. A perfectly timed smile. A family member or friend showing up at just the right time. A sermon that encouraged us. A song that moved us. A Bible verse that resonated with us. A comment on our CaringBridge blog (https://www.caringbridge.org/visit/isaiahwood) or social media post. We’ve felt “carried.” We feel the total weight of 2 Corinthians 4:16: “Though outwardly we are wasting away, yet inwardly we are being renewed day by day.” Each day seems more impossible to face than the last, but God.

We have found the old adage “God is good all the time” to be true. Not because God prevents us from suffering or stops our pain and suffering when we declare that he should. He is good, well, for one, because he is God and gets to define what “good” is.

There have been many times I have wished John 16:33 was worded differently. I wished it said something more like, “In this world you won’t have trouble—if you pray the right words, do the right things, and think the right thoughts. Take heart! Because you can overcome the world.” But, John 16:33 doesn’t say that. My family, we have trouble. I don’t know why. I may never know why. But, today we take heart because Jesus has overcome, he is overcoming, and he will continue to overcome this broken world.

In other words, there is a redemption plan for our brokenness…and not just our brokenness but all human brokenness…and he has promised to carry us through until that day—a day when “Everything sad is going to come untrue, and it will somehow be greater for having once been broken and lost.” (Tim Keller).

In the face of our personal trial, we can attest that God makes good on that promise—the promise to carry us through this momentary breath of a life no matter the depth of the suffering on this earth and no matter how seemingly impossible the trials we all face. Day after day after day. God has been good to us.

At this point in the longest post ever, I’m sure that you are quite tired of reading; but I feel the need to leave you with one last story. Sorry.

One day, a few months ago, I found myself at my wits’ end. (It was far from the first time or last time, but you’ll see why it was significant in a moment.) Careese and I were holding Isaiah as he was struggling. Really struggling. Isaiah had just vomited everywhere and aspirated some of his vomit. He was breathing erratically and struggling to maintain oxygen. His heart rate was 140. His eyes were bloodshot. He was going into and out of full-body seizures. A couple of his siblings looked on in horror. We sat there holding our boy—beyond broken, beyond frustrated, covered in vomit—wrangling the suction machine, ambu bag, oxygen tubes, and a mess of towels. As Isaiah stabilized and we sat there in the aftermath, I was thinking, “There is no way I could describe this feeling. It’s not fair. It’s not humane. No one could possibly understand what it is like to watch your son—the same son who you used to laugh and run and play catch with and who filled your heart with a billion other perfect memories—suffer and die like this…while those who love him most watch helplessly. It’s too much. It’s too hard. Where is God in this? No good can come from this. No one could possibly understand what Careese and I are going through.” Immediately, there was a still soft voice that popped into my head along with an image of the cross. I’m not one who regularly hears an audible voice from God. But, this time, it was clear; and, for a moment, all the chaos was silenced.

“I do. I understand.”

I say all of that to say this: if you, like us, find yourself utterly pummeled in the midst of a living nightmare…if you feel as though you’re walking through the valley of the shadow of death, I’d encourage you to give the teachings of Jesus of Nazareth a shot. I pray that you’ll find the same hope and encouragement that we’ve found. I pray that you’ll feel the comfort of a God who is with you in the valley of the shadow of death, not in a transcendent/avoidant/detached/let’s-pretend-everything’s-ok way, but in a “with you in the mess” way….in an “it’s ok to cry out, yell, and vent all your hurt, frustration, and anger” way. God can take it. He has taken it. And he will take it. That’s part of the power of the cross. Sure, I find overwhelming peace that the mental and physical burden of life after death, salvation, and attaining a joyful eternity was removed from me and placed on someone else’s shoulders. That’s a massive relief—especially when life keeps punching you in the mouth. Simultaneously though, the cross was the ultimate show of empathy...an empathy no other religion offers. Emmanuel. God with us.

Lastly, a word of encouragement to those of you who, like us, feel that God remains silent when he should be the loudest…when he seems to leave your prayers unanswered:

I read this recently regarding Jesus’s “take this cup from me” prayer in Gethsemane; and, it encouraged me. Perhaps it will encourage you as well. “The ultimate example of unanswered prayer became the greatest miracle of all time.”

If you feel so inclined, please think of our family and include us in your prayer time. We would be honored. Isaiah would be honored.

“Of one thing I am perfectly sure: God’s story never ends with ‘ashes.’” - Elizabeth Elliot