Wednesday, September 13, 2017

Six years later, a mom embraces life with her son's brain injury

By D. Brown

Wow! How time flies! Another “back to school” season is upon us. Six years ago, our healthy two-year-old son was hospitalized after suffering seizures and then severe brain inflammation. Since that fateful day, we have watched our son suffer and heal, struggle and overcome, falter and thrive.

Today, our son is firmly settled at his school where there aren't any grades. I know that he “would” be in Grade 3, if he hadn’t had his life-threatening illness. Instead, it's our seventh year raising a toddler. And when I see the young boys playing organized baseball at the local park, my heart does ache.

Despite the sadness around what would have been, what's new about this anniversary is that I no longer feel victimized by what happened. This year, there’s an acceptance around our family's reality and the sense of responsibility that comes with it.

Despite the fact that we have willingly sacrificed ourselves every minute of every day for our son's wellbeing, and are exhausted and worn, I now embrace this reality rather than feel sorry for ourselves.

I don't cower with embarrassment or feel the need to explain our situation when our son is loud and excited in public. I smile at him and comment about what he is experiencing, excited right along with him.

I no longer feel burdened by changing the sheets every few days with overnight diaper leaks. Instead, I'm thrilled that our son is daytime toilet-trained since February.

I don't feel slighted because he’s not neurotypical like other kids. I am enthusiastic about his unique unfolding of growth and development that continues to amaze us.

How did I get here? I think it's a combination of a few things.

Our son has continued to show steady gains in his recovery and development and time has given us practice at our new reality.

I don't really think about what “would have been,” because it's as irrelevant as what life would be like if I were born male, or in 1823, or if our son were a daughter. It didn't happen that way, so who cares?

After our son’s brain injury he was diagnosed with autism. We’ve embraced the Developmental, Individual differences, Relationship-based (DIR) model, or DIR/Floortime as the approach within which to support our son's growth. This is a developmental, rather than a behavioural, approach. DIR/Floortime is a lifelong model that encourages independence, relating, communicating, thinking, and the pursuit of a meaningful personal journey.

This too has given us a framework for acceptance because we can now be patient with our son's own developmental trajectory.

Sure, I still feel sad that our son will never have the kind of school memories that we did, that he hasn't started academics yet, doesn't know how to colour or read, can't write his name or dress himself, nor understand how to count objects.

But for the first time, I'm also okay with it because it will probably all come in time. If it doesn't, he's already perfect as he is, if I just open my eyes and see who is before me, instead of comparing him to a child I might have imagined.

After six years, I've come to own our reality. Our family tragedy called upon us to be there for our son in ways we might not have otherwise been able to.

For example, without our son’s illness, I would have been back at work much earlier, rather than staying home to care for him full-time. Being at home during the day since he started school gave me the time to fulfill the hobbies that kept me sane, and gave me the gift of getting to know our son to the point of experiencing the world from his perspective, to the best of my ability. With that empathy, I have been able to help him flourish.

He feels safe in this world with us. He is loved and treasured. His wellbeing is always taken into account first and foremost. Every day, I wake up happy to have our son with us and to be his mother, because I know that we can take nothing for granted.

I do feel angry, sad, scared, sorry and tired from time to time, but these moments are now fleeting, because I have the confidence that I understand our son, and I know how to support and guide him through his development.

This is different from how I felt in the early days, when I was scared and desperate to find the right therapy for him, or felt pressured to teach him skills that professionals thought he should know. I became disillusioned with the pressure to make him “school ready,” when I was only concerned with his wellbeing and development.

Mostly, I feel joyful, grateful, proud, hopeful, and eager. I've earned this because of the joy I sense in him and see on our son's face every day.

Our family, through my dedication, have collectively given our son a life where he can be himself and is happy. What more could we ever want?

You can follow this family on their blog.