Introduction: The Unforeseen Journey
In January 2018, my 7-month-old baby experienced a major ischemic stroke. We have no known medical cause. Brain injury, disability, and medical uncertainty became our reality in a matter of hours. As a mother and caregiver, I tried desperately to maintain a sense of control in a time filled with question marks.
The Quest for Answers
While in the hospital, I went looking for a book that would be honest about the emotions, fears, and questions this journey created, and give me hope about the future. I could not find it. I decided to share my experience in hope of building connection and hope for others going through their own difficult journey.
Finding Strength in Therapy and the Birth of “Making it to Monday”
Making it Monday
Overtime (and with the help of a therapist) I realized I never actually had control in the first place. I had to start accepting what happened so that I could process, grieve, and give space to enjoy the life I had. Its beauty and its chaos. “Making it to Monday” was written and released in March 2023. Shortly after the book launched, I was asked if I would have written the book if my son’s outcome wasn’t a “success”. The truth is the book was already written 6 months before my son’s epileptic explosion began. These chapters were only added because once that season of life started, it seemed necessary to include it with our journey.
Defining Success on Our Terms
Who defines success? Would seizure freedom after a hemispherectomy be a success? Maybe for some. Would regaining physical or cognitive function entirely after a stroke be a success? Perhaps. For others, it may be an increase in quality of life. I realized success is entirely subjective.
Living in the Present
After our son’s stroke and medical journey I realized that in order to experience joy and happiness, I needed to stop thinking of things in all or nothing terms. I needed to let go of the perceived need to predict with certainty what would happen in the future. I had to accept question marks. The truth is we don’t know if our son will be seizure-free for the rest of his life. He remains on anti-epileptic medication. I can hope, pray, and be optimistic about the future, but I no longer assume anything. Instead, I try living in the present moment as much as I can. Finding joy and recognizing my blessings in the simple things I overlooked in the past. That’s what success is to me. It has nothing to do with surgical outcomes, rehabilitation goals, or being free of medication.
The Power of Community and Awareness
This month is pediatric stroke awareness month. I did not know babies and children could even have strokes until mine did. Pediatric stroke happens to kids of all ages. It impacts everyone in the family system. The journey can be unpredictable. It has question marks about the future and can feel isolating at times too. It’s also an amazing opportunity to recognize the resilience of our children, ourselves, our relationships. There is no better classroom than a crisis. And no better teacher than trauma. Sometimes we have to experience the darkness in order to appreciate the light in our lives.
Check out the Child Neurology Foundation Tools & Resources Page for more resources on how to help YOUR journey.
About Jennifer Nunes
Jennifer Nunes is a Registered Social Worker and psychotherapist who prides herself on working with clients to nourish their souls so they can heal their minds and love their lives. Jennifer lives in the Greater Toronto Area with her husband and their two incredible children. When she’s not working with clients or public speaking, she enjoys staying active as a form of self-care (movement is medicine ), spending time with her family.