We’ve all had times which have brought more life lessons than we wanted to learn. As the primary caregiver for a child diagnosed with a chronic illness, the past five months have been that way for me.
Yet, as I look back, I realize that maybe they were lessons I needed to learn and they’re as aptly summarized as ABC.
A is for advocacy in adversity
I didn’t set out to become my family’s healthcare quarterback, but navigating multiple doctors, hospitals and now a five-person medical team, I’ve had to become an assertive advocate championing the best interests of not only my daughter, English Rose, but our family.
The communication and project management skills I honed during my years in the corporate world have been put to good use in a situation of adversity where my child’s health and well-being are at stake.
B is for belief
“Believe” was my word for the year in 2014, but it’s only in 2016 I’ve come to truly appreciate its powerful nuances.
I have to believe English Rose will make a full recovery because if I don’t, how can I give her the confidence to face continuing treatment?
I’ve also have had to believe the right specialists are out there for her, and to pursue treatment options like a fierce Mama Bear protecting her cub.
Courage and caring, community and CHEO
English Rose has shown great courage or, as my mom would have put it, grit, in facing the many challenges the past months have brought. I’ve been inspired by her strength, and her courage has bolstered mine at times when worry and lack of sleep have stretched me near breaking point.
Her illness has also shown me the caring in our new Canadian community. We’ve had practical and emotional support from her school and our church, and even when I go into the local grocery store people ask how she’s doing.
Thanks to the team at the Children’s Hospital of Eastern Ontario (CHEO), English Rose is getting the best medical care possible, and that care extends to our family. We all have access to tools and coping strategies in living with and supporting someone with chronic pain.
The road ahead
Since English Rose is a child, her prognosis is good, although treatment may take up to a year. With the right combination of medication, she’s more like herself and together, our family is forging a new reality in this place we never wanted to visit.
As for my writing? Family relationships are the threads in the stories I weave, and this experience has helped me deepen the emotion in my writing more than any courses could have.
If I’d had a choice, I wouldn’t have chosen these lessons, but life doesn’t always give us choices. It does, however, give us friends and family, and books and music to help us on our journey.
And when life is dark? For me, there’s always ice cream!