Tips for Cardiac Parents, Part 2

In the fall, before my daughter’s latest crisis, I posted the first in a series of tidbits I wanted to share with parents of cardiac patients on what I have learned through decades of trial and error. Some of these memories are positive but others will address where possibly better choices could have been made. This message relates to how easy it is to forget our other children‘s needs during such times.

First of all, I’m happy to report Lorie is doing extremely well. All major surgery is fraught with fear and challenges and her brain surgery was a terrifying experience for all of us. However, the “old” Lorie, full of determination and positivity, has returned and although there are still challenges to overcome, she’s regaining her strength and bit by bit her independence as well.

When Lorie was two weeks old our doctor surmised a serious health issue and took immediate action. Within a day, she was admitted to the Hospital for Sick Children, Toronto, nearly four hours away. Lorie’s sister was 21 months old, still a baby herself and unaware her babyhood status was over. Mommy’s sudden disappearances, coupled with hastily arranged babysitters for undetermined amounts of time, were her new reality. Adjusting to a sibling is tough enough but M. had to grow up quickly and accept that often her sister needed mommy more.

I was 21 and the girls’ father was 24. Neither of us was equipped with the knowledge or experience to handle a situation of this magnitude. We were placed in the hands of the best cardiologist at Sick Kids and all we could focus on was the situation at hand. M.’s wellbeing was taken for granted. There was no blueprint for how families were to negotiate such circumstances and no awareness as to how best to include a sibling. Counseling and family assistance was unheard of.

It was 1963 and daddies simply didn’t take on the same responsibility they do today. Her father was and still remains a wonderful dad but never took on a maternal role. Through necessity, M.’s care had to be taken over by a series of babysitters, as mommy’s attention was focused on Lorie while daddy went to work. Because of M.’s independent nature, it took years to see she had pulled away very early and that anger and resentment toward all of us manifested during these early years.

Today, thankfully, family counseling is available to help families adjust. Still, it isn’t easy living in this world of uncertainty. In our case, I’d like to think we could have done things differently, but in reality I doubt it. I needed to spend those first few weeks in the city while my husband returned home to his job. We were a young couple with two babies, little money and neither of our families, although supportive, were in a position to take care of M. full time.

As the girls grew older, entered school, and became more socially involved, I often felt that Lorie was the one missing out when it’s obvious now it was in fact M. Her sports activities and many friends couldn’t make up for what was actually missing in her life—her mom. Despite being busy with friends and activities, she knew she would always live in the shadow of her sister’s illness.

Rather than offering answers for struggling parents, I’m just bringing attention to how easy it was for me to lose sight of the whole picture. It’s taken years to grasp how abandoned my older daughter must have felt, much too young to understand what was happening in her life.

Even though today parents can include siblings in the hospital process, we never know how they’re internalizing their new reality. Today M. is a beautiful, caring woman who deeply loves her sister, but sadly a lifetime of built-up resentment toward us lingers just below the surface.

Looking back over five decades of caregiving, my message is simple. Illness does affect the entire family, but inclusion rather than exclusion is key in helping all family members emerge intact.