The cover of When Your World Stops and author Jennifer SiranBy Jennifer Siran, author of When Your World Stops: Finding Hope in your Child’s Medical Journey

“Your son’s heart is doing great! No changes. We will see you in a year.”

Have you ever felt unsettled with good news? It’s an odd side effect of chronic illness and one that has caught me off guard on more than one occasion. My son was born with a congenital heart defect 11 years ago. In 11 years, we have NEVER gone a year between appointments, and as soon as his doctor shared the great news this spring, I immediately requested an appointment sooner. I panicked.

Emotions are tricky.

Emotions are unpredictable on this journey. Just when you think you are able to handle the twists and turns that come with the journey with congenital heart disease, anything can pivot you back into feelings of fear, anxiety, and depression—even GOOD news! If this resonates, you are not alone.

The past two years have been a challenge to our world, and my heart has continually gone out to families just starting the journey with a child with medical differences. For our family, the connection with other families and their stories has been an encouragement and great support for us. I am thankful for excellent communities of support, like the Children’s Heart Network and others, that give space for us to be with those who understand, who “get” why good news unsettled me.

But what if you aren’t an extrovert like me who dives into community? What if talking to medical professionals makes your mouth dry and causes your brain to shut down, leaving you with unspoken questions and deep frustration? What if the grief is hitting so hard that trying to share your heart with anyone breaks open a dam of emotion so large and powerful, and you don’t want to drown anyone?

Looking for your team.

The solitude of COVID gave me time to ponder this need, and out of that came a book. It is a compilation of short chapters, collected over a decade, with feedback from other families, to serve as a sort of lighthouse in the storm. There are days that we lack the strength to interact with other people. The format of a book allows us to enter into the deeper emotions of our world when we are ready to do so, giving us a place where we can control the narrative.

The best support comes from those who understand the journey, who have felt bitter disappointment and are willing to name that feeling without guilt or shame. It is seen with the shared excitement of “My kid is peeing!” which other families may not get the importance of. It’s the odd medical humour that one acquires as a means of survival when the constant beeping of machines threatens to drive you to madness.

Look out, driver!

The reality is that we can face many challenges. Having grown up in Manitoba, I experienced flat, straight, mile-grid roads. I saw what was coming from miles away, from every side. Having lived in BC more recently for a time, I never really knew where the road would take me. Would it turn right or left? Would it go up or down? Was I driving to mountains or lakes? For most, having a child with congenital heart disease is like navigating mountain roads. You don’t always know what’s coming, or what is around the bend. Things can change quickly, or they can be more repetitious, like countless weaves through the mountains.

As parents, we are the navigators of our family. We are the drivers of the vehicles, through this unknown, and our attentiveness and care are extremely important for the safety of all whom we carry with us, our families. How are you doing today? Are you getting the support you need?

In a recent parent education session with CHN, I spoke on the ripple effect of trauma on the whole family and the need for patience, care, and support for caregivers. As parents, we are already excellent at putting our needs last on the list of daily to-dos, and when our child is struggling, our needs get buried deeper down on the list. There is a sense of normalcy with ignoring our every need and focusing on our child; in fact, it sounds un-parent-like to do anything else! But what happens if we run out of gas?

YOU are important too! Caregivers are important! When the life of the caregiver suffers, so does the care of the child. Take time for yourself today to take some deep breaths and chart your course. You got this. We are cheering you on! ♥

Interested in finding out more?

When Your World Stops book: https://www.amazon.ca/When-Your-World-Stops-Finding/dp/177762200X

Parent education session: https://www.childrensheartnetwork.org/parent-education-series/session-5/

Personal website: www.jennifersiran.com

“Checking Your Gauge” is from our summer 2022 newsletter, Heart Matters. See our Newsletters page for more stories and to subscribe.