Posts by Yvonne Hall

I was fortunate enough this past weekend to attend an Embrace and Empower You seminar organized and hosted by a young mom whose daughter is living with a rare congenital condition. This seminar, and its panel of speakers, was not about congenital illness, but the necessity of our own self-care. The theme of her presentation centered on the affirmation, “I am imperfect and I am enough.”

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”Well, here I am again,” I sighed. It was 7 a.m. and the hospital waiting room was still empty. My husband was undergoing day surgery, scheduled for 8 a.m. and this was my sixth visit here in four years. Settling in for a minimum six-hour wait, I remind myself once more to be grateful to be on the waiting room side of the situation.

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Recently, during a casual conversation with my daughter about personal fears, Lorie revealed that being a burden has been a lifetime concern for her. Last year after her brain surgery, that fear became especially real. During her initial recovery, she admitted she’d despaired over why she had survived the transplant only to suffer this debilitating setback. Everything familiar had changed. She no longer knew who she was.

In retrospect, Lorie had been struggling with mild depression. She was tired of fighting to survive. Though strength had abandoned her, thankfully a subconscious determination to live took over. This clearly wasn’t the time to remind her that she had once again defied all odds by surviving a surgery so few do. She was simply tired of it all.

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Last week I lost a dear friend, three short weeks after she received a frightening diagnosis. This beautiful, caring lady always showed concern about my daughter Lorie’s condition, offering a reassuring word. Her state of health was never a worry, so how could we know she would be the one taken so suddenly? Her untimely death reminded me of the uncertainty of the future and the futility of wasting our present moments worrying about what may or may not happen.

This unexpected loss drove home to me once again the truth of the affirmation I keep posted on my computer screen, “Why worry? It will probably never happen.” This can be tough to embrace but so very true.

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Since my daughter’s transplant two years ago, each day has been one of relief and gratitude. Lorie’s recovery has been truly miraculous, even surprising her medical teams. Admittedly, I was becoming complacent. Then without warning, the proverbial “other shoe fell.”

How could she possibly be undergoing brain surgery and what were we doing back in the ICU waiting room? This past month has been a blur of doctors, hospitals, waiting rooms and travel. Lorie has contracted a bacterial infection in her brain diagnosed by a rapidly-growing abscess. Infection is the enemy of transplant patients, but a brain infection was almost beyond the comprehension of her family, as well as her transplant team.

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I recently had the privilege of being invited to participate in a transition orientation day conference at Toronto General Hospital. The purpose of this day, aptly named “Crossing the Street,” was to help educate parents of teenagers presently at SickKids Hospital who will soon be transitioning to the adult hospital across the street. It was also designed to alleviate the fears of these teens and covered all topics of concern in making this adult shift in their lives.

Doctors, coordinators, counselors and experienced parents were available to offer information and assist everyone present with their questions and concerns. It was presented in a relaxed, informal environment where everyone could share experiences and answer questions regarding navigating to an adult hospital system.

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Never once during decades of caregiving did I ever consider I might lose myself in the process.

I was just 20 when I became a mom for the second time but this time was different. My baby daughter was diagnosed with a heart condition called tricuspid atresia and my world was about to change. Hindsight shows me that my entire adult life has been overshadowed by her condition and unknowingly somewhere along the way, I lost “me.”

This shocked me because I had a busy life filled with my own drama and her care was simply another element of mothering. Failed relationships, divorce, and working full time as a single mother to two young daughters were just some of the challenges I faced. My life was busy and I juggled my responsibilities like any busy mom or dad would do.

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Raising a child with CHD can present more than its share of crisis, but I have learned over the years with my daughter Lorie that such times are part of a greater plan. Many setbacks over the years rendered her survival tenuous but were actually stepping stones to unimaginable positive outcomes. I have named these invisible connections my silver thread and learned to be hopeful despite present realities.

My scariest moment in Lorie’s journey occurred four years ago when she suffered an embolism. Most people, even without her fragile condition, don’t recover and for the first time I had to consider the unthinkable possibility she wouldn’t survive.

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