Stepping into a new world

Lucas (above) is one of my favourite visitors at Holland Bloorview. He likes the Shrek character I have in my office. We have a game where I give it to him, he examines it, then throws it as far as possible from his stroller. Then we look at each other, smile and exclaim: "UH OH!" Lucas loves to run. After a few sessions of our throwing game he usually lets his mom know that it's time to go. He wants out of that stroller! Today Lucas' mom writes about the anniversary of an illness that changed Lucas' life. 

Today is the one-year anniversary of a series of events that would change our lives forever.

Our healthy, almost 28-month-old son Lucas had a fever. We weren't too concerned because he had no other symptoms and was acting normal and happy. It was a day later before we decided to take his temperature. Our thermometer needed batteries. While my husband ran across the street to the store, Lucas had a two-to-three minute febrile seizure: his eyes rolled back and his body convulsed.

My husband called 911 and Lucas was rushed by ambulance to our children's hospital. By the time we were discharged four hours later, Lucas was back to his happy self, running around and smiling with his new Thomas the Tank Engine balloon from the hospital gift shop. It was as if nothing had happened.

It was 8 p.m. The doctors warned us that these seizures might happen again, even a few times, in the next couple of years. They said it wasn't abnormal. If Lucas had a seizure again, we were to wait a full five minutes before calling 911. Like this episode, they said, it would probably just pass.

We weren't too alarmed because my husband had suffered febrile seizures as a toddler. We went home, but Lucas' fever persisted—even with Tylenol and ice packs on his head and body.

At 3 a.m. Lucas seized again. I knew something was REALLY wrong. We called 911 right away. This time the hospital staff treated Lucas' condition as a crisis. He was attached to numerous contraptions. I felt my heart drop into my gut, fearing what the outcome would be. His second seizure only lasted about four minutes but he continued to have milder seizures for about 40 minutes. 

Would our son come out of this? Would he have cerebral palsy? A girl in my grade school had a brain aneurysm and was left with cerebral palsy. We had gone out of our way to do everything "right" with Lucas. How could this be happening to us? "This better not be punishment for you laughing at that Internet Special Olympics joke” I whispered to my husband. Then later, “Is earlier today the last time we’re going to see that adorable little guy as we know him?!” 

I couldn’t even fathom the thought that all the fun we had had with Lucas and all of the rituals we had created could be erased just like that. I ended up face down on the floor balling. I thought this was a natural reaction. It perplexed me that staff rushed to ask if I was ok or needed anything, as if my behaviour was unusual.

One year has passed. Our son suffered severe brain inflammation, cause unknown. The initial MRI was normal, but the spinal tap showed increased pressure. Four days later a still seizure led to another MRI which showed the vicious attack on his brain. We spent three weeks at SickKids and three months at Holland Bloorview in rehab. Within a week of treatment at SickKids, Lucas seemed almost back to normal —seeing again, running and playing. But he had what we would later learn were autistic behaviours and wasn't talking.

It’s interesting how all logic goes out the window with such emotional stress. Even in the intensive-care unit, when he was on a breathing tube, I was expecting we’d be going home in the next few days—once Lucas was up again. I never considered that he wouldn't make a full recovery. I wouldn’t allow the EEG research team to keep the electrodes on his head beyond the initial required observation for their study because I fully expected Lucas to wake up and try to yank everything off his head. Lucas has always been a full-on restless protester; a free spirit; a great communicator of his distress with a loud, piercing cry. Now he was groggy from sedation.

When admitted to Holland Bloorview, I remember thinking it was unforgivable that there wasn’t a better psychological debriefing team to prepare new families like us for the kids with complex disabilities we’d see there. People who came to visit all made reference to the dismal predicaments the other patients were in. 

But that wasn’t us. We were "in recovery." In every update with doctors at SickKids, the focus was on Lucas' recovery, and preferably a full recovery. There was never a discussion of potential disabilities.

I felt guilty when my energetic toddler ran past wheelchairs occupied by the absent faces of kids having active seizures. I assumed they had permanent, neurologically devastating conditions. Lucas’ condition wasn’t permanent, and it wasn't devastating.

It was such a strange range of emotions to process: anguish at what we were going through along with gratitude and relief for what we hadn’t lost. We could see that things could have been so much worse. I was given some copies of BLOOM, but they sat on a desk in Lucas' room, unread. It didn't even cross my mind to glance through them. After all, Lucas was not a child with a disability. I did yearn to connect with other inpatient parents. But I was scared to ask their story for fear that they'd envy ours.

It took so many months for the reality of Lucas' situation to sink in. The first whack to our puffy cloud of naïveté happened at a team meeting before discharge, when the "A" word was dropped nonchalantly. I quickly called out: "Are you saying that Lucas might have autism?" Yes, was the answer. Sometimes brain injuries can cause autism. The autism team came to see Lucas, but his behaviour and attention were too erratic to assess. They said they'd see him again in six months, when his brain settled.

Lucas’ brain had a lot of healing to do the doctors said. His autistic behaviour was part of the process of healing, and it may or may not be permanent. Every case is different, we were told, and only time will tell.

The next dose of reality came at our six-month discharge follow-up. "Is it reasonable to hope for a full recovery?" I asked. Lucas, now three, was at about the level of an 18-month old. The answer was less than enthusiastic. "Hope, yes. I always tell parents to expect the worst, hope for the best and usually it's somewhere in between." 

In June Lucas was given a tentative diagnosis of autism. We were told he wasn't merely delayed. He's not like a typical 18-month-old, he's different.

Finally at the epilepsy follow-up clinic at SickKids the doctor said: "Chances for full recovery are slim; but they're there." I think I went into a daze then, which included crying at the drop of a hat to anything and everything related to Lucas.

It took some processing to realize that I had never allowed myself to accept the possibility that Lucas might not fully recover. It brought back all of the grief I never processed last fall. I had cried from time to time, but things were too chaotic to stop and absorb what had happened. Lucas was on high doses of steroids, screaming and fighting the IV, terrified because his sight had not yet fully returned. The focus was entirely on Lucas. So now, months later, I finally had a chance to grieve the Lucas we knew and had lost. 

From time to time I watched old videos of Lucas—especially the ones in which he spoke a lot—and my heart ached. Sometimes my husband and I remember things Lucas said last summer, before the brain inflammation, that were so cute or funny. Like when the waiter brought him water I requested at a restaurant and Lucas said "That's perfect!" After the brain inflammation he didn't remember our home or his favourite place—my parents' house. "Go Nanny's house now!" he was requesting every day the two weeks prior to his illness.

It feels devastating. I feel like I know what it's like to lose a child, even though he didn't die. Maybe that's insulting to say to those who have lost loved ones, but in a sense things changed forever and I grieve that loss. So what I mean is that I can at least begin to relate to what that might feel like. As a result, while at SickKids I pledged that no matter the outcome, "Every day we have with Lucas is the best day in the world!"

At my Mommy group for our kids' third birthday party, one of the mommies lovingly brought a group photo from last summer. Although I treasured it, my reaction surprised me. I couldn't stop crying for the rest of the party. I knew it would be hard seeing where the other three-year-olds were at—so different from Lucas—but I didn't expect to be so emotionally fragile. But being vulnerable and having emotion is what allows us to have strength.

Although I finally allowed myself to feel loss, I have continued to be hard on myself for feeling down at all! After all, Lucas' unique personality is exactly the same as it was before, down to the tiniest quirk. So we don’t really feel we miss anything from before or that we lost Lucas because Lucas is still Lucas, the same person, just with some new qualities that have made our life more complicated. This experience has also made us appreciate the time we have with Lucas more and value his spirited personality, rather than finding it challenging as we used to. We never thought we would miss Lucas' wailing, and now it’s back! It really just feels like we lost about a year of memories, but as kids get older they forget it all anyways.

It does, though, feel like all of our “work” beforehand—the interactions, the love and care, and time together—got washed away like a big reset button was hit. That feels so unfair. 

But I don’t think we get hung up on the idea that Lucas is intrinsically different in a negative way; it’s not very constructive. Rather, we believe that we lost some experiences that we had together, and it hurts that he doesn’t remember, but we’ve built up a lot since then. And he has continued to recover, albeit slowly.

His speech and language have continued to improve (although he's still saying single words, far shy of where he was last summer). He's started asking us for things and interacting more. He is an absolute joy to be around, from his fussiest meltdown moments to his blissful, loving ones.

In the therapies we've discovered, in the people we've met, in the services we've stumbled upon, in the financial assistance we've managed to obtain, we truly have experienced an enormous amount of good fortune along our new path that evolved from that fork in the road a year ago.

My new journey as a mother has been to recognize my place in the world of disability. Lucas is due to start at a special needs nursery school next week. We are part of the world of autism. And my eyes have been opened by the pages of BLOOM. I relate to everything I read in the magazine and on this blog, no matter what the degree of disability. I always knew my son was special. I treated him as special from the get-go. He wasn't like other babies then, and he is not like other three-year-olds now. And he likely won't be "normal" going forward.

I will continue to be an advocate for his benefit. I will learn from all of you other parents faced with challenges in raising your children with special needs. You are my heroes.

What I once saw as misery, dismal predicaments and disability has been vastly altered. Now I am learning that disability is difference but doesn’t have to mean misery. As Canadian Olympian Silken Laumann pointed out in the last issue of BLOOM, “Life is not just about achieving." That really hit me. 

I now understand that in every body is a real person with valid emotions and most importantly awareness, even if the person can't express things the way others can, and that this is what makes compassion and empathetic connections so essential. This awareness is lacking in the “real world." I only hope I can be a source of strength and support to other parents of children who acquire disability through their own unexpected fork in the road.

You can follow Lucas' recovery here.